One Pill, Two Pill, Red Pill, Blue Pill…
I am 33 years old, I have been on disability for 7 years, and I take more medication then most people twice my age. I have had severe migraines all my life, with all the fun side effects: vision change; sensitivity to light, sound, and smells; vomiting; dizziness; depression; moodiness; When I was young my family first thought that I was just saying I had a headache to get out of school. Then when my mother realized the extent of my pain, she tried to get me help. The doctors at the time said it was because I had TMJ (problems with my jaw bones lining up) and I was put in braces. That however did not stop the headaches.
My mother practically yelled at the doctors to help me, to no avail. They finally put me on Depakote. It helped for a little while then the migraines gradually became more frequent, along with the medication changes. I have been on so many different medicines it is hard to name them all, some include: Zomig, Imitrex (other triptans), Migranal, Topamax, Indocin, and several narcotics.
My case became much more complicated when I was diagnosed with Von Willebrands disease, and could no longer take non-steroidal anti-inflammatory drugs (NSAID). I tried everything my doctors would suggest including; no caffeine, exercise, meditation, and becoming a vegetarian. When I was 23 the migraines started to get so bad that I was missing work very frequently. I always had a doctors note for my absence, but any employer would have gotten annoyed with that cycle. I then tried to work as a substitute teacher, that way I could tell them no when I wasn’t able. This plan however had several flaws.
As you all know, migraines can hit at anytime of the day. Therefore I was getting migraines while in a room full kids, not a good thing. At this point I had no insurance, so I was also having trouble getting the help I needed. I was lucky enough to have several doctors who worked with me at a reduced rate. I was rapidly sliding, I had a migraine all the time with a pain score of 7 or higher. That was when I made the decision that I had to file for disability. Amazingly, I got my disability on the first try, no appeals and I didn’t have to even be checked by any new doctors. I was already seeing the doctors who usually evaluate patients for eligibility, and they had already sent recommendations.
It was very difficult to go on disability when I was 26 years old. I did not plan to be disabled, but the migraines kept getting more sever and more frequent. There have been several times over the years that I almost became bed ridden, every time I would move or stand up I would get violently ill. During my better times when I was only having a migraine about once a week, I tried to go back to school or get a job. Neither have come to fruition, as those times never last.
One of the biggest problems, and fears, I face is that medicines will work for a little while and then stop working. I am then back to having a migraine every day with increasing severity. Also, I hate that the medications we try to take to help us live normal lives can cause enough side effects that you have to start taking other medications. Right now I take Neurotin as my preventative and my pain medication.
I also have Fioricet when the other doesn’t work but try to be careful how often I take it. I have several different nausea medications as well. When none of those help I must go get a shot, usually Toradol and Phenergan. I refuse to use narcotics unless all else has failed do to the fact that narcotics can give you a rebound headache. The narcotics might help you ease the pain for a short time, but they do more harm in the long run. Some of my worst times have been cause by getting in the vicious cycle of medication overuse headache.
Part of the reason I have migraines is that I have Pseudotumor Cerebri, that is a technical term for having too much fluid in the skull cavity that causes more pressure on the brain. My foramen magnum (main opening in the base of the skull in which the spinal cord passes through) is under developed but this problem was compounded by the weight I gained (from medication and a sedentary lifestyle).
I have had several spinal taps (Lumbar Punctures) in order to lower the pressure of the fluid on my brain. Though they do help lower my pain, I still live everyday with at least a pain score of 3. Depending on the circumstances I have at least one bad migraine (pain score of 8 or above) a week. I consider it a good week when my pain score stays under a 6.
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