I remember when I was a new mom, how many things I had to have, just in case. Diapers, wipes, change of clothes, light blanket, bottles, formula, snacks, baby food, toys... The list goes on and on! There were times I could get away with half of it, but most days I needed my entire diaper bag.
Having to deal with migraines makes me feel like a new mom all over again. I have my "go bag" that I better not leave the house without. Medication, water, travel cup, snacks, sunglasses, phone, tablet, ear plugs; and if I am going to the doctor, then I have to bring my migraine folder. If I am spending the night somewhere, I have to grab my mouth guard and daily medication as well. I am always glancing through my bag before we leave the house, just to make sure I'm not forgetting something.
Medication, more specifically the acute medication that is supposed to stop a migraine in its tracks. I have two different triptans, Benadryl, ibuprofen, and some PMS medication. All in a little case that keeps them nice and orderly. The little bag is especially important to me, I can find anything I need with my eyes shut (as long as no one messes with it).
I take my travel cup everywhere, it can hold around 20 ounces of water. Before I leave the house I fill it up, if I run out while we are out of the house, then I get a bottle of water somewhere and refill it. I even made a carrier for it for when I do my walking.
Snacks, I carry these so I won't miss a meal, seeing as that causes migraines too. I do my best to keep them to healthy snacks, if only because chocolate melts when it gets too warm.
I don't think I have left my house without my sunglasses in over two years. My fiancé teases that he never gets to see my eyes anymore. I even keep them on when visiting other family member's houses. My sunglasses are polarized in order to "keep the fluorescent lights from reflecting into the eyes". They are not all that successful, I really want to take them to a car tint shop to get them darker.
Like most people, my phone goes everywhere with me, not only because I feel lost without it, but I have tracker apps on my phone. If I get hit with a migraine while I'm not at home, I can input details about what medication I took when. If I don't have the phone, then I am liable to forget what I took when.
My tablet is almost as glued to me as my phone is, for pretty much the same reason. I have different trackers on my tablet, and it also helps me remember important dates.
Ear plugs, these are necessary for many many reasons. Reducing the sound of sirens, loud music, or any other auditory irritant.
My migraine folder is where I keep my paper migraine log, along with EVERYTHING from my neurologist. It goes with me anytime I need to see the doctor, especially in the E.R. I also put all paperwork relating to my migraines in it, E.R. visit papers, medication list printouts, doctor visit summaries, all of it. (I am already on my second folder, and I probably need a third.)
The rest of the items, mouth guard, and daily medication, only come with me when I am leaving for an extended period, an overnight or longer. Otherwise, they are easily accessible at my home.
Most of my "go bag" can fit in my purse. The only issue is that I really don't like carrying a big purse. For some reason it doesn't bother me in winter, but by the time summer rolls around, it is too hot to carry a big heavy bag.
I cannot wait for the day when I am free of these encumbrances, when I can just shove my phone and wallet in my pocket and just go.
"Your present circumstances don't determine where you can go, they merely determine where you start." - Nido Qubein
Monday, May 30, 2016
Friday, May 27, 2016
Doctors for migraines
For some people seeing a doctor is an experience that happens once a year. For chronic pain sufferers, it's closer to once a month. The process we have to go through in order to be properly treated, is almost like jumping through hoops.
First we have to pick a Primary Care Physician (PCP). This doctor needs to be someone who will listen, and knows how to help. Our PCP then refers us to a neurologist. The referral may be instant, but the waiting list is extensive, mine was 3 months. That seems like a lifetime when you are dealing with so much pain, and nothing your PCP can do is helping. What we need to understand is that this is not the olden days, when the family doctor treated people from birth to death, and everything in between. In the current times, our PCP is just that, primary. They can treat us for routine things, like a check up, but beyond that, they are just a stepping stone to the specialist that can handle your specific problem.
There are many specialists your doctor can send you to. Everything from dermatologists (Drs who deal with skin issues), to podiatrists (Drs who deal with feet), and everything in between. Most of which I cannot even pronounce. If I were to try to list them all, this blog would seem endless. The main specialist that concerns people with migraines, is a neurologist, a doctor that works specifically with the brain and nerves.
I have been to two neurologists and they have been radically different from each other. I will call them Dr. S. and Dr. C.
Neurologist number one, Dr. S.: I saw him about five years ago, Dr. S. was a doctor that pumped me full of pills, and when the pills failed, he told me I was impossible to treat, and he could not help me. So I left.
Because of the way he treated me, I was afraid to go to another neurologist. What if they said the same thing? What if I am untreatable? What if I never get better? So I ended up using the E.R. as my treatment facility for three years. Luckily for me I changed PCP's and got one that really listened. As a result of that, I was referred to a great neurologist.
Neurologist number two, Dr. C.: She is the doctor I wish I had years ago, when my migraines weren't so bad. With her help they may not have gotten as strong as they are. Dr. C. is great. I can ask any question, she answers what she can, and if she doesn't know, she says so. I asked her about Dalith piercings, she "did not have any scientific information one way or another on their effectiveness" and asked if I got one I could help her figure out whether or not to recommend them to some of her other patients. It seems to me that we are working together to solve my migraine issue, and that is the kind of relationship you want with your neurologist. Even when I am not there for a follow up, she still does a mini check up on me, to see where I am, and what she can do. She will sometimes alter a medication here, or eliminate at trigger there. Your neurologist will most likely send you to other specialists, a sleep doctor, psychiatrist, chiropractors, and dentist, just to name a few. There will also be tests; MRI, EEG, blood work ups, and many many more. These are important steps in your treatment process. They serve to rule out many physical barriers, or causes of migraines.
Just because one doctor can not or will not help you, doesn't mean a different doctor will be the same. Five years ago I was untreatable according to my doctor. I was afraid to go to another for help, so I didn't, until the migraines got so bad they are almost impossible to control. If I had tried a different doctor right away, my life might be radically different right now.
It doesn't hurt to try a different doctor, the worst thing they can say to you is, "I can't help you", that's when you move on to one who can. If they don't listen, drop them like hot cakes, and get yourself a good doctor. So what if you see five different neurologists in a year, you are trying to find the best doctor for you, and that is the most important factor in your migraine fight. Like I said in an earlier blog, tell your doctor everything. Be totally honest! It is the only way to get the treatment that will work for you.
**This blog is not intended to be used as a substitute for medical advice**
"It is so important for those living with chronic pain to establish good communication with both their healthcare professionals, and their caregivers. Clear communication about pain is vital to receiving proper diagnosis, and effective treatment." - Naomi Judd
First we have to pick a Primary Care Physician (PCP). This doctor needs to be someone who will listen, and knows how to help. Our PCP then refers us to a neurologist. The referral may be instant, but the waiting list is extensive, mine was 3 months. That seems like a lifetime when you are dealing with so much pain, and nothing your PCP can do is helping. What we need to understand is that this is not the olden days, when the family doctor treated people from birth to death, and everything in between. In the current times, our PCP is just that, primary. They can treat us for routine things, like a check up, but beyond that, they are just a stepping stone to the specialist that can handle your specific problem.
There are many specialists your doctor can send you to. Everything from dermatologists (Drs who deal with skin issues), to podiatrists (Drs who deal with feet), and everything in between. Most of which I cannot even pronounce. If I were to try to list them all, this blog would seem endless. The main specialist that concerns people with migraines, is a neurologist, a doctor that works specifically with the brain and nerves.
I have been to two neurologists and they have been radically different from each other. I will call them Dr. S. and Dr. C.
Neurologist number one, Dr. S.: I saw him about five years ago, Dr. S. was a doctor that pumped me full of pills, and when the pills failed, he told me I was impossible to treat, and he could not help me. So I left.
Because of the way he treated me, I was afraid to go to another neurologist. What if they said the same thing? What if I am untreatable? What if I never get better? So I ended up using the E.R. as my treatment facility for three years. Luckily for me I changed PCP's and got one that really listened. As a result of that, I was referred to a great neurologist.
Neurologist number two, Dr. C.: She is the doctor I wish I had years ago, when my migraines weren't so bad. With her help they may not have gotten as strong as they are. Dr. C. is great. I can ask any question, she answers what she can, and if she doesn't know, she says so. I asked her about Dalith piercings, she "did not have any scientific information one way or another on their effectiveness" and asked if I got one I could help her figure out whether or not to recommend them to some of her other patients. It seems to me that we are working together to solve my migraine issue, and that is the kind of relationship you want with your neurologist. Even when I am not there for a follow up, she still does a mini check up on me, to see where I am, and what she can do. She will sometimes alter a medication here, or eliminate at trigger there. Your neurologist will most likely send you to other specialists, a sleep doctor, psychiatrist, chiropractors, and dentist, just to name a few. There will also be tests; MRI, EEG, blood work ups, and many many more. These are important steps in your treatment process. They serve to rule out many physical barriers, or causes of migraines.
Just because one doctor can not or will not help you, doesn't mean a different doctor will be the same. Five years ago I was untreatable according to my doctor. I was afraid to go to another for help, so I didn't, until the migraines got so bad they are almost impossible to control. If I had tried a different doctor right away, my life might be radically different right now.
It doesn't hurt to try a different doctor, the worst thing they can say to you is, "I can't help you", that's when you move on to one who can. If they don't listen, drop them like hot cakes, and get yourself a good doctor. So what if you see five different neurologists in a year, you are trying to find the best doctor for you, and that is the most important factor in your migraine fight. Like I said in an earlier blog, tell your doctor everything. Be totally honest! It is the only way to get the treatment that will work for you.
**This blog is not intended to be used as a substitute for medical advice**
"It is so important for those living with chronic pain to establish good communication with both their healthcare professionals, and their caregivers. Clear communication about pain is vital to receiving proper diagnosis, and effective treatment." - Naomi Judd
Thursday, May 26, 2016
Screen Usage
Everywhere we look there are screens, cell phones, e-readers, flat t.v.'s, tablets, and computers. Unfortunately there is something about these screens that play havoc with our migraines. It could be the brightness, the amount of blue light, or the wavelength of the light. Even the amount of time we spend in front of them could be a factor. A good day can turn into a bad day in the blink of an eye if we spend too much time in front of screens.
But we, as a society are extremely attached to our screens. Our smartphones go with us everywhere, they help us keep in touch with everyone. Even if we have a bad migraine day, we just pop our glasses on, and jump onto Facebook to let others know.
I'm no different. I spend way too much time on my screens. I love my e-reader (tablet). I just love reading, I always have, and with an app that turns my tablet into an e-reader, I can get books from the library without leaving my house (meaning I don't have to deal with the lights). I am ecstatic this app is available and free. However, I have also noticed that if I read too much, if I finish too many books in one day, I get stabbing pains behind my eyes. Part of me wants to say, "it's worth it", but the more realistic part of me says, "nothing is worth this amount of pain."
Flat screen t.v.s give off so much light and noise that sometimes I can't be in the same room as one. My fiancé is disabled, so he is home all day. I am fighting for my disability for migraines, so I am basically a hermit. There are moments the t.v. is just too much noise and light, and I just have to run away.
Tablets are wonderful, I am writing this blog in a notebook, then I will type it on my tablet, then with one finger, I can copy and paste it into my blog. Quick and easy. The game apps on my tablet also keep me occupied most of the time. I can use the Internet to find crochet patterns and "screen shot" them with a push of a button so I can come back and try them later.
As for computer screens, both the old boxy screens, and the new flat screens are bad for us. The "refresh rate" (or the rate at which the screen updated itself) on the old screens was absolutely painful to migraineurs. I remember walking into my call center job once, migraine free at the time, sitting at my little cubicle desk, taking one glance at the screen, and feeling like someone was repeatedly stabbing me in the head with ice picks. I could barely move. I was trying to see through tear filled slitted eyes, seeing double, trying to type a legible note to my supervisor stating there was no way I could work that day. Once back home I struggled with myself, but eventually I decided my health was more important than any job, and I quit the next day. The new screens behave like t.v. screens, they have the same issues. They are too bright, and the light they emit is the wrong wavelength for migraineurs.
The "blue light" produced by all these screens is adding to our migraines. There free apps to help reduce the amount of "blue light" coming from the screens. You can also buy some physical filters to use. Click on this LINK to find out more about the different kinds of filters, and how they can help you. Unfortunately there isn't a blue light filter for Apple products (unless you are willing to "jailbreak?" your item), but Google has a great one that works, it's called "Bluelight Filter" it mutes your whole phone, and is adjustable. The apps for Apple only work on web pages.
"My illness has shaped me, but it does not define me." - Inspirational Quotes Chronic Illness
But we, as a society are extremely attached to our screens. Our smartphones go with us everywhere, they help us keep in touch with everyone. Even if we have a bad migraine day, we just pop our glasses on, and jump onto Facebook to let others know.
I'm no different. I spend way too much time on my screens. I love my e-reader (tablet). I just love reading, I always have, and with an app that turns my tablet into an e-reader, I can get books from the library without leaving my house (meaning I don't have to deal with the lights). I am ecstatic this app is available and free. However, I have also noticed that if I read too much, if I finish too many books in one day, I get stabbing pains behind my eyes. Part of me wants to say, "it's worth it", but the more realistic part of me says, "nothing is worth this amount of pain."
Flat screen t.v.s give off so much light and noise that sometimes I can't be in the same room as one. My fiancé is disabled, so he is home all day. I am fighting for my disability for migraines, so I am basically a hermit. There are moments the t.v. is just too much noise and light, and I just have to run away.
Tablets are wonderful, I am writing this blog in a notebook, then I will type it on my tablet, then with one finger, I can copy and paste it into my blog. Quick and easy. The game apps on my tablet also keep me occupied most of the time. I can use the Internet to find crochet patterns and "screen shot" them with a push of a button so I can come back and try them later.
As for computer screens, both the old boxy screens, and the new flat screens are bad for us. The "refresh rate" (or the rate at which the screen updated itself) on the old screens was absolutely painful to migraineurs. I remember walking into my call center job once, migraine free at the time, sitting at my little cubicle desk, taking one glance at the screen, and feeling like someone was repeatedly stabbing me in the head with ice picks. I could barely move. I was trying to see through tear filled slitted eyes, seeing double, trying to type a legible note to my supervisor stating there was no way I could work that day. Once back home I struggled with myself, but eventually I decided my health was more important than any job, and I quit the next day. The new screens behave like t.v. screens, they have the same issues. They are too bright, and the light they emit is the wrong wavelength for migraineurs.
The "blue light" produced by all these screens is adding to our migraines. There free apps to help reduce the amount of "blue light" coming from the screens. You can also buy some physical filters to use. Click on this LINK to find out more about the different kinds of filters, and how they can help you. Unfortunately there isn't a blue light filter for Apple products (unless you are willing to "jailbreak?" your item), but Google has a great one that works, it's called "Bluelight Filter" it mutes your whole phone, and is adjustable. The apps for Apple only work on web pages.
"My illness has shaped me, but it does not define me." - Inspirational Quotes Chronic Illness
Wednesday, May 25, 2016
"Good" days
In case you haven't read any of my other blogs, let me start off this way. Everyone's ability to tolerate migraine pain is different. Each person has their own definition of what they can and cannot handle. Please keep that in mind as you read this. Every person's "good" days are relative.
"Good" days for some migraineurs, is making it a whole day at work, for others it is just making it out of the bedroom. Every migraineur has their own ruler to measure their "good" day. They may not be able to verbally define what it is, some may not have had one recently, so they forget what a "good"day looks like to them. The blueprint for each migraineurs "good" day is locked up somewhere in their mind. We need to stop focusing on the bad days, and start looking for the "good" days.
I consider my "good" days, days when I can get out of bed in the morning and join my family in their daily activities. My "good" days happen when I can go grocery shopping, when I can do any kind of shopping. Too bad they don't happen more often. In the morning, if I can get up and make coffee without suffering stabbing migraine pain, it's a "good" day. Thanks to my still healing dalith's, most of my mornings are good. It is the afternoons that bring the pain. As long as I don't feel I have to mince my steps in order to keep my head on my shoulders, the day is "passable". The second I have to take small steps, or slide my feet so I don't jar my head, I know my "good" day is going downhill fast.
Even if I start with a "good" day, I know it is not likely to stay that way. Most days disintegrate from "good" to "passable" to "Holy bleep, who is trying to kill me now?" To make it worse, the deterioration usually happens with in hours, if not minutes.
Last summer, I was having a good day, so we went to our local roller coaster park. Bad idea, very bad idea. We got there around 11 am., and by one pm. my good day had become a "who is trying to kill me" kind of day. Between the screaming (mine), the jerky rides (my poor neck), and the noise and pressure of humanity, I was beginning to get a migraine of major proportions. Thankfully, I brought my medication (they were still working at the time) and they muted the migraine enough to allow me to have a great time with my family, without feeling like I was floating or falling asleep. That was the best day of last summer.
I wish that all of our days could be that way. The pain comes, the medicine kick the migraines butt, and we enjoy the rest of our day. I know it is a dream, but dreams are what gets us through this thing we call life. So, dream big. The memory, and sometimes just an idea of a "good" day, is what gets us through the "worst" days. We know the "bad" days cannot last forever, "good" days have to return sometime. I hope that the "good" days outweigh the "bad" for all who suffer from migraines.
"Every Day may not be Good, but there is Some Good in Every Day." -Quotes Valley.
"Good" days for some migraineurs, is making it a whole day at work, for others it is just making it out of the bedroom. Every migraineur has their own ruler to measure their "good" day. They may not be able to verbally define what it is, some may not have had one recently, so they forget what a "good"day looks like to them. The blueprint for each migraineurs "good" day is locked up somewhere in their mind. We need to stop focusing on the bad days, and start looking for the "good" days.
I consider my "good" days, days when I can get out of bed in the morning and join my family in their daily activities. My "good" days happen when I can go grocery shopping, when I can do any kind of shopping. Too bad they don't happen more often. In the morning, if I can get up and make coffee without suffering stabbing migraine pain, it's a "good" day. Thanks to my still healing dalith's, most of my mornings are good. It is the afternoons that bring the pain. As long as I don't feel I have to mince my steps in order to keep my head on my shoulders, the day is "passable". The second I have to take small steps, or slide my feet so I don't jar my head, I know my "good" day is going downhill fast.
Even if I start with a "good" day, I know it is not likely to stay that way. Most days disintegrate from "good" to "passable" to "Holy bleep, who is trying to kill me now?" To make it worse, the deterioration usually happens with in hours, if not minutes.
Last summer, I was having a good day, so we went to our local roller coaster park. Bad idea, very bad idea. We got there around 11 am., and by one pm. my good day had become a "who is trying to kill me" kind of day. Between the screaming (mine), the jerky rides (my poor neck), and the noise and pressure of humanity, I was beginning to get a migraine of major proportions. Thankfully, I brought my medication (they were still working at the time) and they muted the migraine enough to allow me to have a great time with my family, without feeling like I was floating or falling asleep. That was the best day of last summer.
I wish that all of our days could be that way. The pain comes, the medicine kick the migraines butt, and we enjoy the rest of our day. I know it is a dream, but dreams are what gets us through this thing we call life. So, dream big. The memory, and sometimes just an idea of a "good" day, is what gets us through the "worst" days. We know the "bad" days cannot last forever, "good" days have to return sometime. I hope that the "good" days outweigh the "bad" for all who suffer from migraines.
"Every Day may not be Good, but there is Some Good in Every Day." -Quotes Valley.
Tuesday, May 24, 2016
Migraine Diet
A person's diet is usually the main trigger factor in getting migraines. Because this category is so broad, I chose four food areas to discuss, then I will touch on the Migraine Diet. The four foods are: caffeine, gluten, nitrates, and additives.
Caffeine is a double edged sword, sometimes it helps, sometimes it hurts. Personally, I have decreased my caffeine intake from four cups of coffee a day to 1-2 cups. I still eat chocolate, and when I have a bad migraine that the medicine can't help, I'll have an energy drink. I have noticed the first rush of coffee in the morning helps mute any lingering migraine pain. Some people cannot tolerate any kind of caffeine however, so even chocolate is out of the picture for them. If you identify with the last part of the paragraph, there are some caffeine free teas if you need something hot to get you going in the morning. However, I have found that a cold drink of water wakes me up just as well as a hot cup of coffee.
Gluten, the thing in bread that makes it soft, the ingredient that holds bread together, the thing that makes it taste good. Unfortunately a gluten intolerance can cause migraines, and many people with migraines are already on a gluten free diet due to other illnesses. I was worried about this so I asked my PCP to test me for known food allergies. According to the tests I am normal. I still tried a gluten free diet. I am not happy with a lot of the gluten free products on the market. Most of them were either tasteless, or they tasted disgusting. They were also expensive! There was one brand that tasted good, and was relatively inexpensive. It is Live G Free. Their bread was soft, and reminded me of real bread. They have rice crackers that taste like crackers, not rice paste. They have pasta products, and granola. The best part is that I found them at the discount grocery I go to. Amazement!
Nitrates, the food I love. Nitrates are present in anything smoked, bacon, ham, sausage, hot dogs, lunch meat, smoked turkey or chicken, you name it. Even the so called "natural smoked" products have nitrates in them. So if any nitrates are a trigger for you, the "natural" ones will be too. My grandmother is an awesome cook, however, this past year I was off any nitrate containing food. Picture Easter dinner, that big ham coming out of the oven, the left overs turned into homemade ham salad in a few days... Anyways, it's difficult being the only person in your family to have to cut out bacon and other nitrates. Yeah, it's healthier, but ordering at a restaurant is a pain in the neck, and I used to make the best "Bacon Wrapped Meatloaf". I was even perfecting a "Candied Bacon Meatloaf". It is kind of hard to perfect a recipe when you cannot taste the finished product.
There are many things we eat now, that didn't even exist generations ago. Things like artificial sweeteners, MSG (mono sodium glutamate), and other food additives that is used in food to make it taste better. MSG and the other additives are all chemicals. When you eat products that have additives, you are filling your body with chemicals. These chemicals have a side effect of causing migraines in certain people, including myself. Luckily our society has begun recognizing the danger these additives pose to people's health, and have put pressure on food makers to remove the chemicals and replace them with a natural alternative.
The "Migraine Diet", as I have stated before, this is the most depressing, convoluted, and expensive part of being a migraineur. The fact you have to be on a total elimination diet for over a year before you start seeing a difference, is daunting to say the least. However, if you are in a position to afford it, do it. I would if I could afford it. It may be daunting, but there are resources out there that can help you figure out what to eliminate. The Heal Your Headache book by David Buchholz, M.D. Is an excellent source. It explains migraines and what we can do about them in a way anyone can understand. It also contains personal success stories which I found uplifting. The stories also reaffirmed the message in the book, that this diet works. Even though the world of possible food triggers is enormous, there are ways to break it down, but for some migraineurs, you won't find your triggers until they are all eliminated, and slowly reintroduced to your life.
"Be nice to yourself, it's hard to be happy when someone's mean to you all the time." - Below the Radar.
Caffeine is a double edged sword, sometimes it helps, sometimes it hurts. Personally, I have decreased my caffeine intake from four cups of coffee a day to 1-2 cups. I still eat chocolate, and when I have a bad migraine that the medicine can't help, I'll have an energy drink. I have noticed the first rush of coffee in the morning helps mute any lingering migraine pain. Some people cannot tolerate any kind of caffeine however, so even chocolate is out of the picture for them. If you identify with the last part of the paragraph, there are some caffeine free teas if you need something hot to get you going in the morning. However, I have found that a cold drink of water wakes me up just as well as a hot cup of coffee.
Gluten, the thing in bread that makes it soft, the ingredient that holds bread together, the thing that makes it taste good. Unfortunately a gluten intolerance can cause migraines, and many people with migraines are already on a gluten free diet due to other illnesses. I was worried about this so I asked my PCP to test me for known food allergies. According to the tests I am normal. I still tried a gluten free diet. I am not happy with a lot of the gluten free products on the market. Most of them were either tasteless, or they tasted disgusting. They were also expensive! There was one brand that tasted good, and was relatively inexpensive. It is Live G Free. Their bread was soft, and reminded me of real bread. They have rice crackers that taste like crackers, not rice paste. They have pasta products, and granola. The best part is that I found them at the discount grocery I go to. Amazement!
Nitrates, the food I love. Nitrates are present in anything smoked, bacon, ham, sausage, hot dogs, lunch meat, smoked turkey or chicken, you name it. Even the so called "natural smoked" products have nitrates in them. So if any nitrates are a trigger for you, the "natural" ones will be too. My grandmother is an awesome cook, however, this past year I was off any nitrate containing food. Picture Easter dinner, that big ham coming out of the oven, the left overs turned into homemade ham salad in a few days... Anyways, it's difficult being the only person in your family to have to cut out bacon and other nitrates. Yeah, it's healthier, but ordering at a restaurant is a pain in the neck, and I used to make the best "Bacon Wrapped Meatloaf". I was even perfecting a "Candied Bacon Meatloaf". It is kind of hard to perfect a recipe when you cannot taste the finished product.
There are many things we eat now, that didn't even exist generations ago. Things like artificial sweeteners, MSG (mono sodium glutamate), and other food additives that is used in food to make it taste better. MSG and the other additives are all chemicals. When you eat products that have additives, you are filling your body with chemicals. These chemicals have a side effect of causing migraines in certain people, including myself. Luckily our society has begun recognizing the danger these additives pose to people's health, and have put pressure on food makers to remove the chemicals and replace them with a natural alternative.
The "Migraine Diet", as I have stated before, this is the most depressing, convoluted, and expensive part of being a migraineur. The fact you have to be on a total elimination diet for over a year before you start seeing a difference, is daunting to say the least. However, if you are in a position to afford it, do it. I would if I could afford it. It may be daunting, but there are resources out there that can help you figure out what to eliminate. The Heal Your Headache book by David Buchholz, M.D. Is an excellent source. It explains migraines and what we can do about them in a way anyone can understand. It also contains personal success stories which I found uplifting. The stories also reaffirmed the message in the book, that this diet works. Even though the world of possible food triggers is enormous, there are ways to break it down, but for some migraineurs, you won't find your triggers until they are all eliminated, and slowly reintroduced to your life.
"Be nice to yourself, it's hard to be happy when someone's mean to you all the time." - Below the Radar.
Saturday, May 21, 2016
Work
When you suffer from chronic migraines it is hard to keep a full time job. Most times you have to get an FMLA (Family and Medical Leave Act) form, and hope the staff in human resources do not try to find other ways to fire you. If by some miracle you are able to hold down a full time job and deal with your chronic migraines at the same time, I applaud you!
I was doing my best until my migraines increased to the point I became chronic. I have been fighting migraines on and off almost my entire life, since I was about 13. That is 22 years, for some people that is a lifetime. I did not realize until I was in my early 20's what was wrong with me, and by that time I was in the military (think stress, lights, and exercise). When I got pregnant, I only had one bad migraine the entire 9 months. Afterwards, they returned with a vengeance (post-partum depression, stress, worry).
After having my child, my work record is spotty at best. There was a time I painted a room in my house, and found out that my allergy to latex extends to latex house paint in the form of a major migraine attack (that was the quickest trigger I have ever identified). I had to call off work from my serving job, and was told it was my responsibility to cover my shift, if I couldn't then my job was forfeit. So I lost that one, it only lasted a month.
I worked as a manager at a fast food restaurant for four months. The only thing that kept me there so long, was my consumption of energy drinks, daily, before going into work. That trick only worked for so long before it was useless.
The job I was at the longest, was my last job. I was there for almost three years (three months short). Now, I'm not blaming all my job losses on my migraines, but they did make it difficult for me to keep some jobs, and almost impossible to keep others.
Since my most recent job loss, and the chronic migraine cycle I find myself in, I have applied for social security disability, I applied the day after I lost my job. I have been unemployed for two years and eight months, and I am still waiting for a trial date.
Social security seems to believe that chronic migraines aren't disabilities; they are wrong. I know this, as many of you do, because I spent the whole day yesterday, in bed, waiting for the pills to work (they did not) and drop the pain to a manageable level. I was finally able to get out of bed at six pm. I'm sorry, but days like that tend to show me that I am an unproductive person, and I wouldn't even hire me.
For the time being I consider my job to be getting these migraines under control. I have had a constant migraine, muted for some days but still present, for more than two years and nine months.
If you are a lucky migraineur, who does have a full time job, and still deals with chronic migraines, please let me know what you do in the comments. I think it would be interesting to see the diversity of jobs that migraineurs can have. Hopefully you will give someone else an idea, and help them discover a livable working environment.
"Yes I do have a job. My job is to take care of myself and try to get healthy. My job is to make sure that I get enough rest, to make sure I take my medicine, and to make sure I get to my doctors appointments. Sometimes I can't even handle that. But let's be honest here, this is none of your concern..." - Incurable pain quotes, image quotes
I was doing my best until my migraines increased to the point I became chronic. I have been fighting migraines on and off almost my entire life, since I was about 13. That is 22 years, for some people that is a lifetime. I did not realize until I was in my early 20's what was wrong with me, and by that time I was in the military (think stress, lights, and exercise). When I got pregnant, I only had one bad migraine the entire 9 months. Afterwards, they returned with a vengeance (post-partum depression, stress, worry).
After having my child, my work record is spotty at best. There was a time I painted a room in my house, and found out that my allergy to latex extends to latex house paint in the form of a major migraine attack (that was the quickest trigger I have ever identified). I had to call off work from my serving job, and was told it was my responsibility to cover my shift, if I couldn't then my job was forfeit. So I lost that one, it only lasted a month.
I worked as a manager at a fast food restaurant for four months. The only thing that kept me there so long, was my consumption of energy drinks, daily, before going into work. That trick only worked for so long before it was useless.
The job I was at the longest, was my last job. I was there for almost three years (three months short). Now, I'm not blaming all my job losses on my migraines, but they did make it difficult for me to keep some jobs, and almost impossible to keep others.
Since my most recent job loss, and the chronic migraine cycle I find myself in, I have applied for social security disability, I applied the day after I lost my job. I have been unemployed for two years and eight months, and I am still waiting for a trial date.
Social security seems to believe that chronic migraines aren't disabilities; they are wrong. I know this, as many of you do, because I spent the whole day yesterday, in bed, waiting for the pills to work (they did not) and drop the pain to a manageable level. I was finally able to get out of bed at six pm. I'm sorry, but days like that tend to show me that I am an unproductive person, and I wouldn't even hire me.
For the time being I consider my job to be getting these migraines under control. I have had a constant migraine, muted for some days but still present, for more than two years and nine months.
If you are a lucky migraineur, who does have a full time job, and still deals with chronic migraines, please let me know what you do in the comments. I think it would be interesting to see the diversity of jobs that migraineurs can have. Hopefully you will give someone else an idea, and help them discover a livable working environment.
"Yes I do have a job. My job is to take care of myself and try to get healthy. My job is to make sure that I get enough rest, to make sure I take my medicine, and to make sure I get to my doctors appointments. Sometimes I can't even handle that. But let's be honest here, this is none of your concern..." - Incurable pain quotes, image quotes
Friday, May 20, 2016
Stormy days
More than half the migraineurs in the world experience migraines that are triggered by barometric changes, or stormy weather. I am one of those. "Air pressure changes" are one of my major triggers. Flying in airplanes, oncoming storms, and thunder storms in progress all give me migraines.
As discussed in an earlier blog, this is a trigger that is in the unavoidable category, unless you move to a place that has calmer weather, and not everyone can do that. Storms happen. Barometric changes happen. It's called nature, and it's something we have to deal with.
Some migraineurs claim they can predict the weather better than the forecasters on T.V., when it comes to storms. That is very likely true. They feel a migraine lurking in the background just waiting to strike.
Personally, since it has been storming in my area off and on since the middle of April, I have been out of sorts and twitchy, just waiting for the next ramp up in pain. I don't remember this many storms in previous springs, maybe I just wasn't paying attention.
I am just praying for summer to come. I seem to have fewer migraines in the summer, unless I get over heated, or it's stormy. I think summer is my relatively migraine free season. There are too many storms in spring and fall, and too many barometric fluctuations in winter. Which leaves summer as my best time, and I love being warm.
When you have chronic migraines, and deal with barometric changes as a major trigger, storms are the last thing you want to see lurking on the horizon. When you hear a newscaster say, "Storms on the way", part of your carefully fashioned "I'm ok" facade starts to crumble, and you begin to wonder, "is there a place that doesn't get storms? I need to move there."
We think these things to save our sanity, but we don't say them outright, unless we are past our limits. Most of us live where we do because of family, jobs, access to doctors, or a grab bag of other reasons. The stress of moving, packing, leaving the familiar, it may be too much for any migraineur to contemplate sometimes.
This blog wasn't supposed to be about moving, although that is what I have talked about excessively. The focus of this blog was supposed to be storms, but the two words that come to mind when I think about storms make for very short reading.
Storms suck!
Good luck to everyone who deals with storm triggers, and may your horizons be free of clouds.
"It's raining, it's pouring, now my pain levels are soaring. I am taking a med, going to bed, and hoping it's tolerable by morning" - Surviving Chronic Pain
As discussed in an earlier blog, this is a trigger that is in the unavoidable category, unless you move to a place that has calmer weather, and not everyone can do that. Storms happen. Barometric changes happen. It's called nature, and it's something we have to deal with.
Some migraineurs claim they can predict the weather better than the forecasters on T.V., when it comes to storms. That is very likely true. They feel a migraine lurking in the background just waiting to strike.
Personally, since it has been storming in my area off and on since the middle of April, I have been out of sorts and twitchy, just waiting for the next ramp up in pain. I don't remember this many storms in previous springs, maybe I just wasn't paying attention.
I am just praying for summer to come. I seem to have fewer migraines in the summer, unless I get over heated, or it's stormy. I think summer is my relatively migraine free season. There are too many storms in spring and fall, and too many barometric fluctuations in winter. Which leaves summer as my best time, and I love being warm.
When you have chronic migraines, and deal with barometric changes as a major trigger, storms are the last thing you want to see lurking on the horizon. When you hear a newscaster say, "Storms on the way", part of your carefully fashioned "I'm ok" facade starts to crumble, and you begin to wonder, "is there a place that doesn't get storms? I need to move there."
We think these things to save our sanity, but we don't say them outright, unless we are past our limits. Most of us live where we do because of family, jobs, access to doctors, or a grab bag of other reasons. The stress of moving, packing, leaving the familiar, it may be too much for any migraineur to contemplate sometimes.
This blog wasn't supposed to be about moving, although that is what I have talked about excessively. The focus of this blog was supposed to be storms, but the two words that come to mind when I think about storms make for very short reading.
Storms suck!
Good luck to everyone who deals with storm triggers, and may your horizons be free of clouds.
"It's raining, it's pouring, now my pain levels are soaring. I am taking a med, going to bed, and hoping it's tolerable by morning" - Surviving Chronic Pain
Thursday, May 19, 2016
Emergency Room Visit
Sometimes when the pain is too much to control with pills or home remedies, then it is time to go to the Emergency Room. Most migraineurs keep this as a last resort, for their more intractable cases. There are many fears and facts associated with a trip to the E.R.
Fears: the lights will make me worse; the noise level will be unbearable; the doctor won't listen to me or help me; the staff at the E.R. will treat me like I'm just a drug seeker; what they give me will just make me worse tomorrow; what if they refuse to treat me at all?
Some of these fears are actualities, and some of them are just our imagination running away with us. So I am going to discuss each fear, and give you my tricks and tips to handle them.
Facts:
Lights: yes the lights will make you worse, even if you wear sunglasses. My trick is to keep your eyes closed until you absolutely have to open them, and keep your sunglasses on the whole time.
Noise: depending on the type of hospital you go to, this may be an issue. I have noticed that the older hospitals, with open wards, tend to be louder than the newer hospitals. Unfortunately I have no tips for this, unless you can get your hands on a few pairs of ear plugs, and someone to talk for you.
Doctor: this usually isn't a problem. I'm not saying it is never a problem, I am sure there are some doctors out there who are so worn down by their experiences that they just don't care anymore, but in my experience, at least they listen. There is only one thing you can do as a patient if the doctor doesn't listen. Get out of there. Go to a different hospital. And hope you get a good doctor this time.
Drug seeking: unfortunately this is a real problem for some migraineurs. Because our illness is not physical, it is hard for doctors to visually assess our issue. I have not had this specific experience. I keep all my medical professionals in the same hospital network. My Primary Care Physician, my Neurologist, and the hospital I go to, all share my medical records with each other. The E.R. doctor knows I see a neurologist for my migraines. It is much harder for someone to say you are "just a drug seeker" when you have medical records to substantiate your claim.
Make me worse: this happened to me, I went to the hospital because my head was so bad I went home from work in the middle of the day, by the time I got home I could barely stand. My fiancé took me to the hospital, and they gave me a cocktail. By the next day my migraine was worse than it was when I went in the day before. I went back to the hospital, told them that I was in the day before, and now my migraine was worse, and I thought it was from the medications they gave me the day before. They checked their records, and said "oh, that medication has a side effect of causing headaches." I just about lost it, I told them "if that's the case, please don't give it to me again." By the time I left that day the migraine stayed away. If the E.R. trip makes you worse the next day, don't be shy about going back.
Refusal to treat: I have never heard of this happening. It hasn't happened to me, and I hope it hasn't happened to anyone else. I think this is just one of those times that our imagination gets the best of us. If this has happened to you, every hospital has a patient advocate, if the doctors or nurses refuse to treat you, they are available to step in and get you your rights.
Is it hard for people with Chronic Pain to get help at an E.R.? Yes. Chronic pain is an invisible disease. Just by looking at someone you cannot tell if they are afflicted. It is unfair of the E.R.'s in this country to tell us that we aren't in pain, just because we don't look like we are. We should not be afraid to go to the E.R. for the help we need to break the chronic migraine pain cycle. The E.R. is supposed to be there to help when we cannot get in to see our own doctors.
My advice is: when choosing an PCP, specialist, and hospital, try to keep them in the same network. In this technological age we live in, the networked doctors have the ability to know your medical history, and what most likely brought you to the E.R. the second they open your file.
**This blog is not intended to be used as a substitute for medical advice**
"Never feel guilty about a medical choice you made to help yourself deal with your pain, when it was at its worse. You were just trying your best in a world that shuts us out." - Fibromyalgia on Pinterest
Fears: the lights will make me worse; the noise level will be unbearable; the doctor won't listen to me or help me; the staff at the E.R. will treat me like I'm just a drug seeker; what they give me will just make me worse tomorrow; what if they refuse to treat me at all?
Some of these fears are actualities, and some of them are just our imagination running away with us. So I am going to discuss each fear, and give you my tricks and tips to handle them.
Facts:
Lights: yes the lights will make you worse, even if you wear sunglasses. My trick is to keep your eyes closed until you absolutely have to open them, and keep your sunglasses on the whole time.
Noise: depending on the type of hospital you go to, this may be an issue. I have noticed that the older hospitals, with open wards, tend to be louder than the newer hospitals. Unfortunately I have no tips for this, unless you can get your hands on a few pairs of ear plugs, and someone to talk for you.
Doctor: this usually isn't a problem. I'm not saying it is never a problem, I am sure there are some doctors out there who are so worn down by their experiences that they just don't care anymore, but in my experience, at least they listen. There is only one thing you can do as a patient if the doctor doesn't listen. Get out of there. Go to a different hospital. And hope you get a good doctor this time.
Drug seeking: unfortunately this is a real problem for some migraineurs. Because our illness is not physical, it is hard for doctors to visually assess our issue. I have not had this specific experience. I keep all my medical professionals in the same hospital network. My Primary Care Physician, my Neurologist, and the hospital I go to, all share my medical records with each other. The E.R. doctor knows I see a neurologist for my migraines. It is much harder for someone to say you are "just a drug seeker" when you have medical records to substantiate your claim.
Make me worse: this happened to me, I went to the hospital because my head was so bad I went home from work in the middle of the day, by the time I got home I could barely stand. My fiancé took me to the hospital, and they gave me a cocktail. By the next day my migraine was worse than it was when I went in the day before. I went back to the hospital, told them that I was in the day before, and now my migraine was worse, and I thought it was from the medications they gave me the day before. They checked their records, and said "oh, that medication has a side effect of causing headaches." I just about lost it, I told them "if that's the case, please don't give it to me again." By the time I left that day the migraine stayed away. If the E.R. trip makes you worse the next day, don't be shy about going back.
Refusal to treat: I have never heard of this happening. It hasn't happened to me, and I hope it hasn't happened to anyone else. I think this is just one of those times that our imagination gets the best of us. If this has happened to you, every hospital has a patient advocate, if the doctors or nurses refuse to treat you, they are available to step in and get you your rights.
Is it hard for people with Chronic Pain to get help at an E.R.? Yes. Chronic pain is an invisible disease. Just by looking at someone you cannot tell if they are afflicted. It is unfair of the E.R.'s in this country to tell us that we aren't in pain, just because we don't look like we are. We should not be afraid to go to the E.R. for the help we need to break the chronic migraine pain cycle. The E.R. is supposed to be there to help when we cannot get in to see our own doctors.
My advice is: when choosing an PCP, specialist, and hospital, try to keep them in the same network. In this technological age we live in, the networked doctors have the ability to know your medical history, and what most likely brought you to the E.R. the second they open your file.
**This blog is not intended to be used as a substitute for medical advice**
"Never feel guilty about a medical choice you made to help yourself deal with your pain, when it was at its worse. You were just trying your best in a world that shuts us out." - Fibromyalgia on Pinterest
Wednesday, May 18, 2016
Family members that mean well...
...But obviously have no idea what they are talking about.
I am sure every migraineur can relate to this, there is always that one family member who thinks they know what causes your migraines better than you do. They are also so sure that they can cure them better too. No matter how often you tell them that you are doing what your doctor says, they know better.
This is a frustrating experience for anyone, but especially for people with chronic migraines, because we have more opportunities for meddlesome family members to give unneeded and unwanted advice.
"Just lower the stress in your life" Stress is hard to lower when the migraines cut into your work, and make you worry about how to pay bills.
"Just eat healthy foods, then you won't get migraines" A migraine diet is a very expensive and particular diet to be on. According to some sources, you need to be on a total elimination diet for over a year before you will show any improvement. For some people that is just not feasible.
"Work through it, then it'll get better" Powering through the pain is what we do anyways, and it makes the migraine worse, not better.
"You really need to do something about those headaches" To this comment I am speechless. I go to my specialist, I take my medicine, I avoid my triggers. What more would you have me do?
"Take a pill" We take pills, we take them all the time. Sometimes the pills take a while to kick in, and even worse, our bodies become so accustomed to the medication we take, that it stops working completely.
"Drink more water" Personally, I feel as if I have a water bottle attached to my hand, I drink so much water. If I drink any more, I'll burst.
"Have you tracked your food and temperature? Do you track what you smell?" This one streams me up. Who wants to walk around all day with a notebook and a timer so they can track "what they smell". I've tracked my diet, it doesn't really work when you have multiple triggers. As for the temperature tracking, I haven't got the faintest idea how that is supposed to help.
"Have you tried this, it helped my friend" That is the battle cry of most people suffering from chronic pain. We have tried almost everything to "fix" us. In fact, we most likely heard about it before you did.
"Get out side, get some fresh air" Sorry, but when a migraine hits I want dark, not sunny. I can't even stand gloomy most days.
"Have you prayed about it?" Countless times. My family has prayed for me daily too. It hasn't worked yet, and personally I would prefer if God's attention was on bigger things. Stopping wars, feeding the hungry. Fix the world first, then you can get around to my comparatively small problem.
Most of these quotes come from an article titled "18 Things not to say to a person with a migraine" on migraine.com
Knowing what you want to say to meddling family members isn't the same as actually saying it to them. Usually it is easier just to nod your head (as best you can) and say things like, "hmm, that's interesting", or "I'll try that." No matter how much we suffer, we are not allowed to tell them what we really think, because we are family. Under that same "They're family" umbrella, family members need to understand, that their advice really isn't helpful. Telling us how to manage our chronic pain just stresses us out. We have so much advice coming at us from doctors, friends, strangers, and other migraineurs, that we are trying to keep straight, that we just can't take anymore. We will explode, and we don't want to explode on our family. So please, give us some time to straighten this migraine thing out with our doctors help. However well intentioned your advice is, it isn't actually very helpful.
I am sure every migraineur can relate to this, there is always that one family member who thinks they know what causes your migraines better than you do. They are also so sure that they can cure them better too. No matter how often you tell them that you are doing what your doctor says, they know better.
This is a frustrating experience for anyone, but especially for people with chronic migraines, because we have more opportunities for meddlesome family members to give unneeded and unwanted advice.
"Just lower the stress in your life" Stress is hard to lower when the migraines cut into your work, and make you worry about how to pay bills.
"Just eat healthy foods, then you won't get migraines" A migraine diet is a very expensive and particular diet to be on. According to some sources, you need to be on a total elimination diet for over a year before you will show any improvement. For some people that is just not feasible.
"Work through it, then it'll get better" Powering through the pain is what we do anyways, and it makes the migraine worse, not better.
"You really need to do something about those headaches" To this comment I am speechless. I go to my specialist, I take my medicine, I avoid my triggers. What more would you have me do?
"Take a pill" We take pills, we take them all the time. Sometimes the pills take a while to kick in, and even worse, our bodies become so accustomed to the medication we take, that it stops working completely.
"Drink more water" Personally, I feel as if I have a water bottle attached to my hand, I drink so much water. If I drink any more, I'll burst.
"Have you tracked your food and temperature? Do you track what you smell?" This one streams me up. Who wants to walk around all day with a notebook and a timer so they can track "what they smell". I've tracked my diet, it doesn't really work when you have multiple triggers. As for the temperature tracking, I haven't got the faintest idea how that is supposed to help.
"Have you tried this, it helped my friend" That is the battle cry of most people suffering from chronic pain. We have tried almost everything to "fix" us. In fact, we most likely heard about it before you did.
"Get out side, get some fresh air" Sorry, but when a migraine hits I want dark, not sunny. I can't even stand gloomy most days.
"Have you prayed about it?" Countless times. My family has prayed for me daily too. It hasn't worked yet, and personally I would prefer if God's attention was on bigger things. Stopping wars, feeding the hungry. Fix the world first, then you can get around to my comparatively small problem.
Most of these quotes come from an article titled "18 Things not to say to a person with a migraine" on migraine.com
Knowing what you want to say to meddling family members isn't the same as actually saying it to them. Usually it is easier just to nod your head (as best you can) and say things like, "hmm, that's interesting", or "I'll try that." No matter how much we suffer, we are not allowed to tell them what we really think, because we are family. Under that same "They're family" umbrella, family members need to understand, that their advice really isn't helpful. Telling us how to manage our chronic pain just stresses us out. We have so much advice coming at us from doctors, friends, strangers, and other migraineurs, that we are trying to keep straight, that we just can't take anymore. We will explode, and we don't want to explode on our family. So please, give us some time to straighten this migraine thing out with our doctors help. However well intentioned your advice is, it isn't actually very helpful.
"Don't tell me that you understand.
Don't tell me that you know.
Don't tell me that I will survive,
How I will surely grow.
Don't tell me this is just a test,
That I am truly blessed.
That I am chosen for this task,
Apart from all the rest.
Don't come at me with answers
That can only come from me.
Don't stand in pious judgement
Of the bonds I must untie
Don't tell me how to suffer,
And don't tell me not to cry.
My life is filled with selfishness right now,
My pain is all I see.
But I need you, and I need your love,
Unconditionally.
Accept me in my ups and downs,
I need someone to share
Just hold my hand and let me cry,
And say to me, 'I care' "
- Joanetta Hendel
Tuesday, May 17, 2016
Home Remedies
Sometimes we get stuck in a migraine cycle that medicine cannot break, and instead of going to the hospital, we try home remedies. I'll discuss each from my viewpoint, and provide a link to a site where they go more in depth.
First, the free ones, the ones that don't cost you anything, and you can do them from home.
- Putting an ice pack over your eyes and the back of your neck. For some people, this constricts the blood vessels that are painfully enlarged.
- Putting your hands and feet in a hot water bath, and an ice pack on the back of your neck. This draws the blood to your extremities, and cools the blood heading to your brain.
- An alternating hot and cold shower on your head. This gives your brain a chance to cool down, and relax, decreasing the pain.
- Having an extremely hot washcloth covering your eyes, temples, and forehead. Make it as hot as you can stand. This helps relax away the pain.
- Use a heating pad over your shoulders, or on your head. This calms you down, and relaxes tight muscles, effectively decreasing the strain of the migraine.
- For some people, an icy drink helps decrease migraine pain. Giving yourself "brain freeze" helps collapse the enlarged vessels.
- A relaxing bath has the same effect on your body as a heating pad, except the bath calms your entire body.
- For some, not all, the caffeine rush in coffee, tea, and energy drinks helps decrease, or mask, the pain associated with migraines.
- Using a pressure point massage may work, if you know the points to massage.
- Taking time for meditation can help decrease a migraine.
Now, for this next set of remedies, you may need to purchase something either in a drug store (D), at a specialty shop (S), or at your neighborhood grocery store (G), but the items are relatively inexpensive.
- Put an ice pack at the base of your skull, take some Benadryl(D), and rub Vicks Vapo Rub(D) on your forehead, temples, and under your nose. This helps block odors, loosen congestion in the temples, and relax the forehead.
- Use peppermint wax melts(S) on your temples. This should help relax you.
- Peppermint oil(S), and coconut oil(G) mixed together, and rubbed into your temples help relax your muscles.
- Using essential oils(S) can decrease the pain associated with a migraine.
- Making tea with ginger(G) or feverfew(S) can help decrease the migraine.
- Taking supplements(D,G,S) can help with migraine pain.
This last set of remedies are more of a preventive. They are more expensive; and they don't work right away, or they aren't available everywhere.
- Getting a Dalith piercing. These cost at least $50 per ear,depending on your location. They inflict a lot of pain the first few days. For some the pain is unbearable. After the first few days they usually work extremely well in breaking migraine cycles. For some, however, they stop working after they heal.
- A Heppa Air Filter can help by decreasing the allergens in your house.
- Sea bands, mostly help with the nausea associated with migraines.
- Legal medical marijuana, with high levels of CBD (Cannabinol), which does not get you stoned, is an appealing treatment for chronic pain sufferers.
If you are interested in a more in depth view of the remedies listed above, or are curious about some I haven't covered, check out this LINK. They have an entire list with links to sites you can purchase all of the items noted in this blog, as well as informational books to help break the pain cycle.
If none of these work for you, I suggest going to the E.R. they have strong drugs, and the ability to inject them, for faster absorption by the body.
**This blog is not intended to be used as a substitute for medical advice**
"Tough times don't last, but tough people do." - Inspirational quotes about sickness.
First, the free ones, the ones that don't cost you anything, and you can do them from home.
- Putting an ice pack over your eyes and the back of your neck. For some people, this constricts the blood vessels that are painfully enlarged.
- Putting your hands and feet in a hot water bath, and an ice pack on the back of your neck. This draws the blood to your extremities, and cools the blood heading to your brain.
- An alternating hot and cold shower on your head. This gives your brain a chance to cool down, and relax, decreasing the pain.
- Having an extremely hot washcloth covering your eyes, temples, and forehead. Make it as hot as you can stand. This helps relax away the pain.
- Use a heating pad over your shoulders, or on your head. This calms you down, and relaxes tight muscles, effectively decreasing the strain of the migraine.
- For some people, an icy drink helps decrease migraine pain. Giving yourself "brain freeze" helps collapse the enlarged vessels.
- A relaxing bath has the same effect on your body as a heating pad, except the bath calms your entire body.
- For some, not all, the caffeine rush in coffee, tea, and energy drinks helps decrease, or mask, the pain associated with migraines.
- Using a pressure point massage may work, if you know the points to massage.
- Taking time for meditation can help decrease a migraine.
Now, for this next set of remedies, you may need to purchase something either in a drug store (D), at a specialty shop (S), or at your neighborhood grocery store (G), but the items are relatively inexpensive.
- Put an ice pack at the base of your skull, take some Benadryl(D), and rub Vicks Vapo Rub(D) on your forehead, temples, and under your nose. This helps block odors, loosen congestion in the temples, and relax the forehead.
- Use peppermint wax melts(S) on your temples. This should help relax you.
- Peppermint oil(S), and coconut oil(G) mixed together, and rubbed into your temples help relax your muscles.
- Using essential oils(S) can decrease the pain associated with a migraine.
- Making tea with ginger(G) or feverfew(S) can help decrease the migraine.
- Taking supplements(D,G,S) can help with migraine pain.
This last set of remedies are more of a preventive. They are more expensive; and they don't work right away, or they aren't available everywhere.
- Getting a Dalith piercing. These cost at least $50 per ear,depending on your location. They inflict a lot of pain the first few days. For some the pain is unbearable. After the first few days they usually work extremely well in breaking migraine cycles. For some, however, they stop working after they heal.
- A Heppa Air Filter can help by decreasing the allergens in your house.
- Sea bands, mostly help with the nausea associated with migraines.
- Legal medical marijuana, with high levels of CBD (Cannabinol), which does not get you stoned, is an appealing treatment for chronic pain sufferers.
If you are interested in a more in depth view of the remedies listed above, or are curious about some I haven't covered, check out this LINK. They have an entire list with links to sites you can purchase all of the items noted in this blog, as well as informational books to help break the pain cycle.
If none of these work for you, I suggest going to the E.R. they have strong drugs, and the ability to inject them, for faster absorption by the body.
**This blog is not intended to be used as a substitute for medical advice**
"Tough times don't last, but tough people do." - Inspirational quotes about sickness.
Monday, May 16, 2016
Medicine
People who suffer from chronic migraines know about doing almost anything to get rid of the pain cycles we find ourselves in. Our most often turned to relief is the medication we are prescribed. I have three of those weekly pill organizers, one for the a.m., one for noon, and one for the p.m. I have medication I take in the morning; assorted vitamins and a muscle relaxer; medicine I take in the afternoon; another muscle relaxer; and medicine I take at night; an anti-depressant, and more muscle relaxers to help me sleep. This doesn't include the medicines in my "save me" bag, the rescue medication I take with me everywhere. In there I have two different triptans, an anti-nausea, Benadryl, and ibuprofen. My "save me" bag rattles so much my mom used to joke around and call me a walking pharmacy, until I finally told her how much that label hurt me, and she stopped. If I ever spend the night away from home I have to pack at least the a.m. and p.m. ones, if I am away longer, then I grab the noon too, just in case.
My neurologist has me on vitamins; such as, vitamin B12, D3, magnesium, and a multi-vitamin. These are supposed to correct vitamin deficiencies that I have (had?). I have been on them over a year. The rest of the medication I am taking during the day are my preventatives. Basically, they are supposed to prevent migraines from developing. In my case the have not worked yet. My "save me" bag contains my rescue medication. The medication I take to abort the migraine in its tracks.
The triptans were working quite well, until about a month ago. Now they are about as effective as a Tylenol, which all migrainers know doesn't come close to touching the pain.
That is just the medication I have at home, I have also gotten Botox, nerve blocks, and trigger point injection in my neurologist's office. If the pain is bad enough for me to go to the E.R. for relief, they give me an injection of a migraine cocktail that usually knocks the pain out of the park. However, on some occasions I have had to go back to the E.R. because the medication caused a rebound migraine.
The Botox and other shots I get in my neurologist's office also fall into the preventative category. The influx of medication at the point of pain is supposed to minimize the migraine. I haven't really felt any difference. The migraines still feel as frequent and as strong as before.
My personal advice, which I will be taking myself at my appointment next month, is to be totally honest with your doctors. Let them know if the medication has stopped working for you. They need to know so they can get you a different control or rescue medication. The doctor isn't with you every day. They do not know if the medicine doesn't work unless you tell them. This is your responsibility as a patient. If they don't listen to you, that is another issue, and one I will cover in my blog about doctors.
Just remember, be truthful about your pain, and your relief, your doctor cannot help you unless you are.
**This blog is not intended to be used as a substitute for medical advice**
"For once I just want to wake up and feel like I can win this battle, I want to open my eyes and feel like my day is going to be a success, not another day to face a battle where it's likely I will not only suffer, but lose. The odds are still against me. But I haven't given up yet, and I don't plan to any time soon. I have all the strength I can muster up, and enough hope to share with the world." - Shelby's life with lyme.
My neurologist has me on vitamins; such as, vitamin B12, D3, magnesium, and a multi-vitamin. These are supposed to correct vitamin deficiencies that I have (had?). I have been on them over a year. The rest of the medication I am taking during the day are my preventatives. Basically, they are supposed to prevent migraines from developing. In my case the have not worked yet. My "save me" bag contains my rescue medication. The medication I take to abort the migraine in its tracks.
The triptans were working quite well, until about a month ago. Now they are about as effective as a Tylenol, which all migrainers know doesn't come close to touching the pain.
That is just the medication I have at home, I have also gotten Botox, nerve blocks, and trigger point injection in my neurologist's office. If the pain is bad enough for me to go to the E.R. for relief, they give me an injection of a migraine cocktail that usually knocks the pain out of the park. However, on some occasions I have had to go back to the E.R. because the medication caused a rebound migraine.
The Botox and other shots I get in my neurologist's office also fall into the preventative category. The influx of medication at the point of pain is supposed to minimize the migraine. I haven't really felt any difference. The migraines still feel as frequent and as strong as before.
My personal advice, which I will be taking myself at my appointment next month, is to be totally honest with your doctors. Let them know if the medication has stopped working for you. They need to know so they can get you a different control or rescue medication. The doctor isn't with you every day. They do not know if the medicine doesn't work unless you tell them. This is your responsibility as a patient. If they don't listen to you, that is another issue, and one I will cover in my blog about doctors.
Just remember, be truthful about your pain, and your relief, your doctor cannot help you unless you are.
**This blog is not intended to be used as a substitute for medical advice**
"For once I just want to wake up and feel like I can win this battle, I want to open my eyes and feel like my day is going to be a success, not another day to face a battle where it's likely I will not only suffer, but lose. The odds are still against me. But I haven't given up yet, and I don't plan to any time soon. I have all the strength I can muster up, and enough hope to share with the world." - Shelby's life with lyme.
Friday, May 13, 2016
"Worst" days
Everyone's ability to tolerate migraine pain is different. Each person has their own definition of what they cannot handle, and what they can work through. Please keep that in mind as you read this blog, my "worst day" is not going be the same as some one else's "worst day". I do not get auras, I also cannot throw up unless I force myself to do so.
There are days that I feel the migraine hovering in the background, and I know it is just waiting to pounce, and then there are days when I can barely open my eyes before the pain of the miniature miner in my head goes to work with an ice pick. Personally, I do the best I can, I still try to go grocery shopping, or go walking, or do anything to try not to hide out in my darkened room... I can only put on a brave face for so long before the pain starts breaking through, either in my actions or my unintentionally hurtful words.
Sometimes when migraineurs are dealing with what feels like endless pain, they physically and emotionally can't hide it anymore. Unfortunately, when our control snaps, we end up being hurtful to the ones we love most, we don't do this on purpose, we really don't want to cause anyone pain.
If you do not have migraines, imagine for a moment that every action you did, every step you took, every word you spoke, broke a bone in your body. How long could you put on a brave face, and not snap at those around you? More often than not it isn't only what you are doing that is "breaking bones" it is what everyone around you is doing too.
According to my headache trackers, I have been dealing with the same migraine for 672 hours straight, or 28+ days. Sometimes it is muted in the morning, some mornings I don't want to get out of bed. The constant storms in my area are not helping my functionality, neither is the fact that if I don't go shopping, I don't get the items I want or need. I try to make sure that the shopping is done in one store, one trip for the week. If I had more storage in my place I would stock up for a month, but there just isn't. So no matter how I feel I have to go grocery shopping once a week. There have been times when I sent my fiancé instead, with a short list of what we need, just enough to get through a few days until I felt "normal" enough to deal with it, even then somethings were "missing" from the list when he got back.
On my bad days the pain usually ramps up drastically around noon; followed quickly by nausea, muffled hearing, and blurry vision. 90% of the time my pain is located around my temples and eye sockets, the other 10% is centered in my jaw.
I have noticed recently that whenever I am in pain I clench my jaw. My neurologist noticed too, so the last time I got Botox done she injected some into my jaw muscles. Now when my jaw is relaxed, my teeth no longer crash together, however, it did not stop my "clenching while in pain" issues.
Most migraineurs try to save their rescue mess for their own worst day scenarios, which is entirely understandable. Most insurance companies only allow 9 "triptan" pills a month (triptans are one of the best ways to fight migraines). Chronic migraineurs get 20-25 migraines a month, 9 pills cannot handle that many migraines. Which is why we try to save them for "the bad ones."
Sometimes, however, the "bad ones" come day after day, knowing that your medication may run out is the only thing keeping you from dosing every day, no matter how much you want an end to the pain.
When mine become too much to handle, I get a super hot washcloth for my eyes, and lay down in a quiet, dark room. The last place I lived, I slept on the floor of my closet with the door shut. It was the only area in the apartment without windows. Whenever my fiancé found me there he would drag me to the Emergency Room, by that time I really needed to go. If the washcloth and dark room does not work, my fiancé or my mom will usually drag me to the E.R.
Whenever I start feeling one of my bad days coming on I try to ignore it, which is probably not the best thing to do under the circumstances, but I want to have some semblance of a normal life, and I feel that ignoring the pain long as I can gives me the best shot at a normal life that I can have.
I know not all migraineurs have the same pain tolerances, and my "bad day" could, very possibly be someone else's "ok day". Just because my pain manifests in different ways, doesn't mean that I don't understand what we are all going through.
"Chronic pain patients tend to minimize their pain to try to seem as "normal" as possible. We don't want to be perceived as complainers so we keep much of our pain experience to ourselves." - Rotten eCards
There are days that I feel the migraine hovering in the background, and I know it is just waiting to pounce, and then there are days when I can barely open my eyes before the pain of the miniature miner in my head goes to work with an ice pick. Personally, I do the best I can, I still try to go grocery shopping, or go walking, or do anything to try not to hide out in my darkened room... I can only put on a brave face for so long before the pain starts breaking through, either in my actions or my unintentionally hurtful words.
Sometimes when migraineurs are dealing with what feels like endless pain, they physically and emotionally can't hide it anymore. Unfortunately, when our control snaps, we end up being hurtful to the ones we love most, we don't do this on purpose, we really don't want to cause anyone pain.
If you do not have migraines, imagine for a moment that every action you did, every step you took, every word you spoke, broke a bone in your body. How long could you put on a brave face, and not snap at those around you? More often than not it isn't only what you are doing that is "breaking bones" it is what everyone around you is doing too.
According to my headache trackers, I have been dealing with the same migraine for 672 hours straight, or 28+ days. Sometimes it is muted in the morning, some mornings I don't want to get out of bed. The constant storms in my area are not helping my functionality, neither is the fact that if I don't go shopping, I don't get the items I want or need. I try to make sure that the shopping is done in one store, one trip for the week. If I had more storage in my place I would stock up for a month, but there just isn't. So no matter how I feel I have to go grocery shopping once a week. There have been times when I sent my fiancé instead, with a short list of what we need, just enough to get through a few days until I felt "normal" enough to deal with it, even then somethings were "missing" from the list when he got back.
On my bad days the pain usually ramps up drastically around noon; followed quickly by nausea, muffled hearing, and blurry vision. 90% of the time my pain is located around my temples and eye sockets, the other 10% is centered in my jaw.
I have noticed recently that whenever I am in pain I clench my jaw. My neurologist noticed too, so the last time I got Botox done she injected some into my jaw muscles. Now when my jaw is relaxed, my teeth no longer crash together, however, it did not stop my "clenching while in pain" issues.
Most migraineurs try to save their rescue mess for their own worst day scenarios, which is entirely understandable. Most insurance companies only allow 9 "triptan" pills a month (triptans are one of the best ways to fight migraines). Chronic migraineurs get 20-25 migraines a month, 9 pills cannot handle that many migraines. Which is why we try to save them for "the bad ones."
Sometimes, however, the "bad ones" come day after day, knowing that your medication may run out is the only thing keeping you from dosing every day, no matter how much you want an end to the pain.
When mine become too much to handle, I get a super hot washcloth for my eyes, and lay down in a quiet, dark room. The last place I lived, I slept on the floor of my closet with the door shut. It was the only area in the apartment without windows. Whenever my fiancé found me there he would drag me to the Emergency Room, by that time I really needed to go. If the washcloth and dark room does not work, my fiancé or my mom will usually drag me to the E.R.
Whenever I start feeling one of my bad days coming on I try to ignore it, which is probably not the best thing to do under the circumstances, but I want to have some semblance of a normal life, and I feel that ignoring the pain long as I can gives me the best shot at a normal life that I can have.
I know not all migraineurs have the same pain tolerances, and my "bad day" could, very possibly be someone else's "ok day". Just because my pain manifests in different ways, doesn't mean that I don't understand what we are all going through.
"Chronic pain patients tend to minimize their pain to try to seem as "normal" as possible. We don't want to be perceived as complainers so we keep much of our pain experience to ourselves." - Rotten eCards
Thursday, May 12, 2016
Triggers
There is a laundry list of possible migraine triggers, encompassing everything from the food we eat to the weather changes that we have no control over. A lot of the triggers that migrainers deal with are unavoidable, meaning we can not do anything to avoid these triggers.
Some of the unavoidable triggers are: barometric pressure and weather changes, for example, approaching storms, heat and humidity levels, air travel, and high altitudes; sensory stimulus, such as, perfumes, tobacco smoke, cleaning products, and bright or flickering lights; hormonal fluctuations, like, menstrual cycle, pregnancy, or menopause; physical exertion, for instance, bending over, aerobic exercise, weight lifting, coitus, and dehydration; sleep deprivation; and stress (found in Heal Your Headache by David Buchholz, M.D.).
It takes a long time to figure out what your triggers are, tracking your migraines through apps like "Migraine Buddy" (also available in the Google Play Store), "Migraine Diary", and "Migraine Meter" in the App Store; or "Headache Diary", and "Headache Log" in the Google Play Store; allows you to track each migraine along with what possible unavoidable triggers may have caused it. Tracking your migraines for a few months will give you a database of information such as, weather, intensity levels, location, food, unavoidable triggers, menstruation cycles, aura symptoms, medications taken, home reliefs tried, affected activities, where the pain starts, and whether any home reliefs helped decrease your migraine.
Now comes the most confusing part of the trigger list, the food triggers. I consider it the most confusing because I tried to eliminate all the foods on the trigger list, and all I ended up doing was spending a lot of money and making myself miserable at the same time with no effect on the status of my migraines. You can find a detailed list of foods to avoid HERE.
I know a few of my food triggers, and I am trying to find more. I know eating foods containing MSG or Nitrates, causes me to have migraines. MSG is found in a lot of processed foods, especially ranch dressing and Chinese food. Nitrates are found in all smoked meats, and most lunch meats, including any ham product, like bacon 😢 . My personal trigger list is varied, it includes: oncoming storms, fluorescent lights, house paint containing latex, menstrual changes, air pressure changes, stress, not getting enough sleep, the smell of perfumes and cleaning products, exercise, dehydration, MSG, and Nitrates. I am sure there are many I haven't discovered yet, I have many migraines I cannot find a trigger for.
Even some "quick fix" medications can cause rebound migraines which are just as bad, if not worse than the original migraine. I was caught in a cycle like that before I was able to see a neurologist. I was taking a Percocet almost every day because I was in so much pain. When I finally saw my neurologist she immediately took me off the Percocet and put me on actual helpful medication. It took a few weeks but eventually the rebounds went away.
There are many resources available online to help you list and discover your possible triggers, and that is the first step to knowing what to avoid if you can. I know that migraines seem like an endlessly, daunting task to deal with, but hopefully with care, caution, and sometimes a bit of pure dumb luck, we can turn this disease into something that only bothers us once a month, and not every day.
"Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." - Michael J. Fox
Some of the unavoidable triggers are: barometric pressure and weather changes, for example, approaching storms, heat and humidity levels, air travel, and high altitudes; sensory stimulus, such as, perfumes, tobacco smoke, cleaning products, and bright or flickering lights; hormonal fluctuations, like, menstrual cycle, pregnancy, or menopause; physical exertion, for instance, bending over, aerobic exercise, weight lifting, coitus, and dehydration; sleep deprivation; and stress (found in Heal Your Headache by David Buchholz, M.D.).
It takes a long time to figure out what your triggers are, tracking your migraines through apps like "Migraine Buddy" (also available in the Google Play Store), "Migraine Diary", and "Migraine Meter" in the App Store; or "Headache Diary", and "Headache Log" in the Google Play Store; allows you to track each migraine along with what possible unavoidable triggers may have caused it. Tracking your migraines for a few months will give you a database of information such as, weather, intensity levels, location, food, unavoidable triggers, menstruation cycles, aura symptoms, medications taken, home reliefs tried, affected activities, where the pain starts, and whether any home reliefs helped decrease your migraine.
Now comes the most confusing part of the trigger list, the food triggers. I consider it the most confusing because I tried to eliminate all the foods on the trigger list, and all I ended up doing was spending a lot of money and making myself miserable at the same time with no effect on the status of my migraines. You can find a detailed list of foods to avoid HERE.
I know a few of my food triggers, and I am trying to find more. I know eating foods containing MSG or Nitrates, causes me to have migraines. MSG is found in a lot of processed foods, especially ranch dressing and Chinese food. Nitrates are found in all smoked meats, and most lunch meats, including any ham product, like bacon 😢 . My personal trigger list is varied, it includes: oncoming storms, fluorescent lights, house paint containing latex, menstrual changes, air pressure changes, stress, not getting enough sleep, the smell of perfumes and cleaning products, exercise, dehydration, MSG, and Nitrates. I am sure there are many I haven't discovered yet, I have many migraines I cannot find a trigger for.
Even some "quick fix" medications can cause rebound migraines which are just as bad, if not worse than the original migraine. I was caught in a cycle like that before I was able to see a neurologist. I was taking a Percocet almost every day because I was in so much pain. When I finally saw my neurologist she immediately took me off the Percocet and put me on actual helpful medication. It took a few weeks but eventually the rebounds went away.
There are many resources available online to help you list and discover your possible triggers, and that is the first step to knowing what to avoid if you can. I know that migraines seem like an endlessly, daunting task to deal with, but hopefully with care, caution, and sometimes a bit of pure dumb luck, we can turn this disease into something that only bothers us once a month, and not every day.
"Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." - Michael J. Fox
Wednesday, May 11, 2016
Migraine Brain
Most people who deal with the constant migraines, and the resulting medication of them know this term. For those who do not, Migraine Brain encompasses everything, from being generally confused, to the most extreme form, blacking out. Migraine Brain escalates from: general confusion; moving and thinking slower; the inability to articulate a specific word; exchanging one word for another, such as saying "lamp" when you mean to say "spoon"; misreading words on a page, reading "pain" instead of "brain"; not being able to spell a word or do math; forgetting your age, what year it is, whether or not you have taken medication and when, or even your own name; forgetting how to do tasks you have done for years; doing things by rote, such as going to get a coffee mug only to stare at the plate cabinet wondering why you opened that door, when the coffee mug cabinet was open the entire time; putting things away where you think they belong, only to find them hours later in the wrong place, for example, putting the car keys in the refrigerator instead of on the table by the door; tending a wound on the wrong finger; forgetting what you are trying to say in the middle of a sentence; mixing up the brake and gas pedals or even getting lost while driving, because of this many migraine sufferers are afraid to drive or even learn to do so; and finally, doing things with absolutely no memory of it later.
One of my lapses occurred the other day. I was looking for the top of a miniature greenhouse we had removed a few days ago. I knew I put it in a safe place because my fiancé tried to throw it away and I saved it. The last place I remembered seeing the lid was on the dryer. I searched the entire laundry room and couldn't find it. I then proceeded to try to communicate to my mom that I thought it was in the closet outside the house. What transpired at that point was quite different. I remember standing in the laundry room saying "it's in the room, with the door, over there" repeatedly while acting like an aircraft marshal (while writing this I had another dose of migraine brain, I couldn't remember what "the guys that direct the airplane" were called, thank goodness for Google.) using both arms to direct her attention to a spot on the wall that corresponded to the appropriate location of the closet outside. As I gave up in getting her to understand what I was trying to say, I walked towards the newly planted green house in another room. As I got closer to the plants I looked down and saw the cover I was looking for the whole time.
The important factors to take from this true story, is that no one is alone when dealing with migraine brain, and it happens at anytime, even when you are writing something important. Eventually the people you interact with on a daily basis will get so used to the occurrences of this, that they will, and do, begin translating your meanings to the rest of the world. There is also the massive possibility, or probability, that your friends and loved ones won't even remember what you said a day later, it is that common.
There are times when you can laugh at your migraine brain, migraine fog, or just plain "out-of-it-ness" ( yes, I know it isn't a word). It will not be right away, maybe not even that same month, but you will laugh again. Knowing new ways to enjoy your own little quirks, and laugh at yourself, makes each day the beginnings of a brighter future for all of us.
"Every time you find some humor in a difficult situation, you win." -Chronic Pain Warrior Quotes
One of my lapses occurred the other day. I was looking for the top of a miniature greenhouse we had removed a few days ago. I knew I put it in a safe place because my fiancé tried to throw it away and I saved it. The last place I remembered seeing the lid was on the dryer. I searched the entire laundry room and couldn't find it. I then proceeded to try to communicate to my mom that I thought it was in the closet outside the house. What transpired at that point was quite different. I remember standing in the laundry room saying "it's in the room, with the door, over there" repeatedly while acting like an aircraft marshal (while writing this I had another dose of migraine brain, I couldn't remember what "the guys that direct the airplane" were called, thank goodness for Google.) using both arms to direct her attention to a spot on the wall that corresponded to the appropriate location of the closet outside. As I gave up in getting her to understand what I was trying to say, I walked towards the newly planted green house in another room. As I got closer to the plants I looked down and saw the cover I was looking for the whole time.
The important factors to take from this true story, is that no one is alone when dealing with migraine brain, and it happens at anytime, even when you are writing something important. Eventually the people you interact with on a daily basis will get so used to the occurrences of this, that they will, and do, begin translating your meanings to the rest of the world. There is also the massive possibility, or probability, that your friends and loved ones won't even remember what you said a day later, it is that common.
There are times when you can laugh at your migraine brain, migraine fog, or just plain "out-of-it-ness" ( yes, I know it isn't a word). It will not be right away, maybe not even that same month, but you will laugh again. Knowing new ways to enjoy your own little quirks, and laugh at yourself, makes each day the beginnings of a brighter future for all of us.
"Every time you find some humor in a difficult situation, you win." -Chronic Pain Warrior Quotes
Tuesday, May 10, 2016
Morning struggle
Getting out of bed in the morning is a carefully staged process for most people dealing with chronic migraines.
Stage 1: Prop your upper body up, elbow high, from your pillow. This is to check your pain level. Either your head is pounding too much, or the level is low enough to let you stand. When I have a minimal pain day I continue onto stage two. We will discuss maximum pain levels in a later chapter. Stage 2: Sitting fully upright on the bed, feet still under the covers. This stage is somewhat of a double check for pain and a first check for nausea. Again focusing on minimal pain levels I would move right along to stage three. Stage 3: Time for the feet to touch the floor. Even on my minimal pain days, this is the most excruciating stage. I get shooting pins and needles in my feet that make it extremely difficult to walk. However, it usually wears off in about two to three hours. Knowing that it will go away is the only motivation I have to move on to step four. Step 4: Standing. Reaching this step means you are officially out of bed. On a relatively good day these four stages only last two to three minutes. On a day when the migraine pain has come to stay, the stages can last hours, if not all day.
Most times the lack of energy, or complete willingness to put yourself through the pain, leads some sufferers to keep pills by their bedside, or as a last resort, to wake someone else up to get their pills for them. I can tell you I have done it myself. I keep my pills in a blue plastic pencil case in my purse, that is the perfect size for my pill bottles, so I have them when I need them. I am not ashamed that I have sent my 13 year old daughter to bring me "my blue bag" from my purse, my fiancé has also been my gopher (go-for). Sometimes when a migrainer needs relief, they will ask anyone capable of understanding and following directions to help them.
This is an okay thing! Every now and then even "normal" people need help. Asking for someone to bring you medication does not make you weak. Asking for help is a perfectly acceptable option when you are too sick, or in too much pain, to do it yourself. Chronic migrainers aren't superman/superwoman. Asking for help is not going to kill us. Every now and then, even the strongest person is dependent on something or someone.
We need to change the way we look at ourselves and our disease. Yes, our disease is a hateful thing to live with, we may resent all the times it takes us away from our family, we may loathe the fact that there isn't a quick fix for us, we probably harbor hostility towards this disease because it doesn't "show" when we suffer every day, but we definitely do not wish this on our worst enemy, and definitely not on our children (who are the most likely to get it). We need to come to terms with all of that, and find our own way to rise above it, and make this world a better and more tolerant place for everyone.
There is a migraine group on Facebook that is doing just that. The name of the group is HeadsUPMigraine, and they are hard at work to get chronic daily migraines placed on the disability list for social security. They are busy cultivating contacts in senators offices to help chronic daily migraine sufferers get on disability, they are also a great support network for anybody tackling this disease. Do yourself a favor, check them out HERE (if the link doesn't work for you, search them out on Facebook) and see what they are doing for you.
"Please, don't judge. You don't know what it took for someone to get out of bed, look as presentable as possible, face the day, & face the world. You know nothing of their daily struggle." - Chronic Illness Awareness
Stage 1: Prop your upper body up, elbow high, from your pillow. This is to check your pain level. Either your head is pounding too much, or the level is low enough to let you stand. When I have a minimal pain day I continue onto stage two. We will discuss maximum pain levels in a later chapter. Stage 2: Sitting fully upright on the bed, feet still under the covers. This stage is somewhat of a double check for pain and a first check for nausea. Again focusing on minimal pain levels I would move right along to stage three. Stage 3: Time for the feet to touch the floor. Even on my minimal pain days, this is the most excruciating stage. I get shooting pins and needles in my feet that make it extremely difficult to walk. However, it usually wears off in about two to three hours. Knowing that it will go away is the only motivation I have to move on to step four. Step 4: Standing. Reaching this step means you are officially out of bed. On a relatively good day these four stages only last two to three minutes. On a day when the migraine pain has come to stay, the stages can last hours, if not all day.
Most times the lack of energy, or complete willingness to put yourself through the pain, leads some sufferers to keep pills by their bedside, or as a last resort, to wake someone else up to get their pills for them. I can tell you I have done it myself. I keep my pills in a blue plastic pencil case in my purse, that is the perfect size for my pill bottles, so I have them when I need them. I am not ashamed that I have sent my 13 year old daughter to bring me "my blue bag" from my purse, my fiancé has also been my gopher (go-for). Sometimes when a migrainer needs relief, they will ask anyone capable of understanding and following directions to help them.
This is an okay thing! Every now and then even "normal" people need help. Asking for someone to bring you medication does not make you weak. Asking for help is a perfectly acceptable option when you are too sick, or in too much pain, to do it yourself. Chronic migrainers aren't superman/superwoman. Asking for help is not going to kill us. Every now and then, even the strongest person is dependent on something or someone.
We need to change the way we look at ourselves and our disease. Yes, our disease is a hateful thing to live with, we may resent all the times it takes us away from our family, we may loathe the fact that there isn't a quick fix for us, we probably harbor hostility towards this disease because it doesn't "show" when we suffer every day, but we definitely do not wish this on our worst enemy, and definitely not on our children (who are the most likely to get it). We need to come to terms with all of that, and find our own way to rise above it, and make this world a better and more tolerant place for everyone.
There is a migraine group on Facebook that is doing just that. The name of the group is HeadsUPMigraine, and they are hard at work to get chronic daily migraines placed on the disability list for social security. They are busy cultivating contacts in senators offices to help chronic daily migraine sufferers get on disability, they are also a great support network for anybody tackling this disease. Do yourself a favor, check them out HERE (if the link doesn't work for you, search them out on Facebook) and see what they are doing for you.
"Please, don't judge. You don't know what it took for someone to get out of bed, look as presentable as possible, face the day, & face the world. You know nothing of their daily struggle." - Chronic Illness Awareness
Monday, May 9, 2016
My back story
I feel like I am in some sort of AA meeting. "Hi, my name is Lyn, and I have Chronic Migraines." This is the beginning of a new blog series in which I will try to make a record of what it is like to live with chronic debilitating daily migraines. I hope that I can reach one person, and that this will give someone a feeling of not being alone.
I was 15 years old when I got my first migraine. I remember coming home from school crying, and grabbing my hair in both hands and pulling as hard as I could to try to control the pain. There were also times when I banged my forehead against the wall to try to distract me from the pain in my head. Obviously neither of those worked, and my biggest mistake was not telling anyone about the amount of pain I was in. As a young teen I just figured that this was normal growing pains. Boy was I wrong. It took me 11 years to figure out that something was wrong with me. And I still didn't think that anyone else experienced the things I did. Until about 5 years ago when I was able to get an office job, and the migraines began to increase.
I have held a lot of jobs in my life, I am a military veteran, I've worked at many fast food, and restaurant establishments. I've been a daycare assistant teacher, and I've worked for the military version of a women's shelter and suicide hotline. However, my longest held job was as an administrative assistant for a small local envelope company for almost three years. I answered phones, maintained an envelope production and printing schedule in Excel, and created invoices through a computer program. During my last year in the office, my migraines ramped up in their frequency and duration to the point where I was missing two and a half to three days of work a week. Under the advice of the office manager I got an FMLA form in order to try to keep my job while dealing with the migraines. Unfortunately, I was under fire from the human resources director and was written up repeatedly for things that had happened months earlier. With the combination of the migraines and the HR campaign against me, I wasn't successful in keeping my job, and in October of 2014 I became unemployed.
I did two things immediately, I applied for social security disability, and for state assistance through my local Job and Family Services office. In my local county, food stamp recipients must either volunteer or work at least 20 hours a week. I tried volunteering at a local food and clothing pantry. My pain got to the point that I was taking my two doses of rescue medication daily, and nothing was helping. By discovering one of my major migraine triggers was fluorescent lights, I was able to get a letter from my doctor stating that I cannot be around them. Fluorescent lights are present in 99.9% of public places. My local JFS was able to accept the doctors note and allowed me to keep my food stamps without having to volunteer. During this time I received two denial letters from social security disability, both stating that according to them I was not disabled, and could get any other job, as long as the noise level for that job was small. The noise level only bothers me when I am experiencing a full blown migraine, on my worst migraine days I cannot even look at a computer screen, or go anywhere that has fluorescent lights on the premises, without my head feeling like it has exploded. My major issue in finding another job, is to find one without fluorescent lights and computers.
Over the first five months after losing my job, I went from living in my own apartment with my fiancé, having my own car, having my own job, teaching Sunday School at my church, and having a good chance of getting custody of my daughter; to living at home with my mother, having my car repossessed, loosing my job, being unable to go to church with my family, let alone teach Sunday School, worrying about how I am supposed to pay child support, and wondering when I will be able to see my child.
I can not take medication every time I need to, because my insurance only allows 9 rescue pills a month, if I do not make them last, they are gone in the first two weeks. If this happens I end up in the Emergency Room being labeled a "drug seeker". That is not what I am, what I am is in pain, and sometimes an intravenous drug cocktail is the only thing that helps, and lets me feel normal, even for a minute. Most days I cannot get out of bed, let alone look at a screen of any kind. Daily, I have to deal with numerous symptoms as a result of having this chronic disease, such as: ringing in the ears, muffled hearing, constant nausea, difficulty focusing, dizziness, localized burning and itching in the brain, difficulty finding the correct words, floating spots in my vision, and feeling like I am not able to think right. Many of these symptoms are warning alarms to me that a migraine is coming, but half the time I get them when I am already dealing with a migraine. It is difficult to lead any sort of life when a person is burdened with this kind of chronic disease.
I work hard to find the happiness and joy in everyday situations. I know "laughter is the best medication", but sometimes when a person is burdened with this much pain daily, laughter is a distant memory. The easiest thing for me to laugh at is our silly, lazy, rescue cat. She does the funniest things. My favorite is when she gets into her pounce position and wiggles her butt. That never fails to bring a smile to my face.
I would like to task anyone reading this to find one thing every day that brings a smile to your face. It can be anything, from a child's behavior, to a funny show on tv. Just find something that makes your day happy.
" I don't want my pain and struggle to make me a victim. I want my battle to make me someone else's hero" - Chronic Pain Warrior Quotes
I was 15 years old when I got my first migraine. I remember coming home from school crying, and grabbing my hair in both hands and pulling as hard as I could to try to control the pain. There were also times when I banged my forehead against the wall to try to distract me from the pain in my head. Obviously neither of those worked, and my biggest mistake was not telling anyone about the amount of pain I was in. As a young teen I just figured that this was normal growing pains. Boy was I wrong. It took me 11 years to figure out that something was wrong with me. And I still didn't think that anyone else experienced the things I did. Until about 5 years ago when I was able to get an office job, and the migraines began to increase.
I have held a lot of jobs in my life, I am a military veteran, I've worked at many fast food, and restaurant establishments. I've been a daycare assistant teacher, and I've worked for the military version of a women's shelter and suicide hotline. However, my longest held job was as an administrative assistant for a small local envelope company for almost three years. I answered phones, maintained an envelope production and printing schedule in Excel, and created invoices through a computer program. During my last year in the office, my migraines ramped up in their frequency and duration to the point where I was missing two and a half to three days of work a week. Under the advice of the office manager I got an FMLA form in order to try to keep my job while dealing with the migraines. Unfortunately, I was under fire from the human resources director and was written up repeatedly for things that had happened months earlier. With the combination of the migraines and the HR campaign against me, I wasn't successful in keeping my job, and in October of 2014 I became unemployed.
I did two things immediately, I applied for social security disability, and for state assistance through my local Job and Family Services office. In my local county, food stamp recipients must either volunteer or work at least 20 hours a week. I tried volunteering at a local food and clothing pantry. My pain got to the point that I was taking my two doses of rescue medication daily, and nothing was helping. By discovering one of my major migraine triggers was fluorescent lights, I was able to get a letter from my doctor stating that I cannot be around them. Fluorescent lights are present in 99.9% of public places. My local JFS was able to accept the doctors note and allowed me to keep my food stamps without having to volunteer. During this time I received two denial letters from social security disability, both stating that according to them I was not disabled, and could get any other job, as long as the noise level for that job was small. The noise level only bothers me when I am experiencing a full blown migraine, on my worst migraine days I cannot even look at a computer screen, or go anywhere that has fluorescent lights on the premises, without my head feeling like it has exploded. My major issue in finding another job, is to find one without fluorescent lights and computers.
Over the first five months after losing my job, I went from living in my own apartment with my fiancé, having my own car, having my own job, teaching Sunday School at my church, and having a good chance of getting custody of my daughter; to living at home with my mother, having my car repossessed, loosing my job, being unable to go to church with my family, let alone teach Sunday School, worrying about how I am supposed to pay child support, and wondering when I will be able to see my child.
I can not take medication every time I need to, because my insurance only allows 9 rescue pills a month, if I do not make them last, they are gone in the first two weeks. If this happens I end up in the Emergency Room being labeled a "drug seeker". That is not what I am, what I am is in pain, and sometimes an intravenous drug cocktail is the only thing that helps, and lets me feel normal, even for a minute. Most days I cannot get out of bed, let alone look at a screen of any kind. Daily, I have to deal with numerous symptoms as a result of having this chronic disease, such as: ringing in the ears, muffled hearing, constant nausea, difficulty focusing, dizziness, localized burning and itching in the brain, difficulty finding the correct words, floating spots in my vision, and feeling like I am not able to think right. Many of these symptoms are warning alarms to me that a migraine is coming, but half the time I get them when I am already dealing with a migraine. It is difficult to lead any sort of life when a person is burdened with this kind of chronic disease.
I work hard to find the happiness and joy in everyday situations. I know "laughter is the best medication", but sometimes when a person is burdened with this much pain daily, laughter is a distant memory. The easiest thing for me to laugh at is our silly, lazy, rescue cat. She does the funniest things. My favorite is when she gets into her pounce position and wiggles her butt. That never fails to bring a smile to my face.
I would like to task anyone reading this to find one thing every day that brings a smile to your face. It can be anything, from a child's behavior, to a funny show on tv. Just find something that makes your day happy.
" I don't want my pain and struggle to make me a victim. I want my battle to make me someone else's hero" - Chronic Pain Warrior Quotes
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