Posted 10/21/2009 5:55 PM (GMT -6)
First of all, I'm currently 17 years old and male. When I was 8 years old (Summer of 2000) I was hit by a baseball directly above my right eye; the blow caused a slight concussion and required stitches. Fast forward to 2005 - I began having severe headaches off and on. Up until that point, I had been healthy except for unexplainable stomach pains while I was in 6th grade (in hind sight were most likely abdominal migraine). After a few headaches, my pediatrician referred me to a neurologist to be examined - which quickly led to the diagnosis of migraine and began my journey of countless doctor visits and medications.
In the beginning, I had headaches maybe a couple times a month that never seemed to respond to conventional abortives like triptans and I would need to come in to the office for an infusion of benadryl, toradol, and reglan. Although I did not find out until later on, I have an extremely adverse reaction to phenothiazines (reglan, compazine, phenergan, etc.) called akathisia which left lasting mental side effects. The side effects were so severe I was afraid to let my parents know I had a migraine in fear of going back to the office for treatment (I originaly thought it was fear of the hospital, I didn't figure out the cause until much later after having had these drugs pumped into me time and again). As the frequency increased, I was put on my first preventive medication - Nortriptyline. None of the preventive or abortive medications tried by my neurologist had any noticeable effect and through the next 2 years, I bounced around from drug to drug.
I've always been a good student, participating in honors and AP classes and various activities and maintaining a GPA above 4.0. Up until my junior year of high school, I would go to lengths to get work done and things made up that even surprised my teachers. Despite missing at least 50 days my sophomore year, I managed to teach myself material at home (challenging material at that) and maintain a 4.2 GPA. I would arrange to come before and after school to take tests, as well as attend detention sessions on Saturday where I was able to take tests because the sessions were proctored (I was not forced/obligated to, and I'm still the only on at my school who has utilized them for make-up work). However, things took a turn for the worse by my junior year. By that point, I'd been hospitalized for various intravenous protocols that provided little to no relief. My headaches started increasing in frequency and severity with a vengeance. It reached the point where I wasn't able to attend school, so my parents arranged a visit at the Michigan Head Pain and Neurological Institute (MHNI), a short 6 hour drive each way from where I live in Iowa.
At MHNI, I was inpatient for close to 3 weeks where various drugs and protocols were tested on me. I wasn't very much improved and eventually sent home with a train load of meds and told I needed psychological help because they thought that was the main component to my pain. The only drug they gave me that worked to any degree was IM Benadryl (which I was forced to inject myself with almost daily). On these meds, I lost my personality and any desire to do anything, as well as gained close to 80 lbs. When I went to get help at an ER when I could not control my headache, I would eventually see a doctor after many hours of waiting only to be told that they wouldn't give me anything and I had a drug seeking problem. Depression, hopelessness, and suicidal thoughts aside (they started around the time my headaches grew worse and I had no means to control them), things were at a very low point. Not able to attend school or tolerate much of anything, the majority of my time was spent in my room with the lights off rolling around in pain and trying to obtain some level of comfort. After a lot of time like that, many old friends had stopped trying to contact me or include me in things because the majority of the time I was not able to participate. Obviously, that wasn't a big help to the isolation issue and the fact that I keep to myself was probably no help either in hind sight. MHNI would make no med changes over the phone, so to make any change, I would have to drive 6 hours for a 30 minute appointment and drive 6 hours home. Fed up with them, we decided to cancel treatment from them and try and alternative means.
At this point I went to a local pain specialist in my area to see if he could shed any light on the issue. He recognized pain on the supraorbital and supratrochlear nerves. I was initially started on methadone, which caused pitting adema and fluid retention in the lungs so that was changed to Opana. Granted, opioids are rarely prescribed for headaches or people my age, but at the point I was ready to face the side effects if it would amount to some level of normalcy. Later on, I had a procedure done on the nerves with great success. I haven't had a full blow migraine since the procedure (1 month ago) and that coupled with the new meds I was on (and even more importantly the meds I was no longer on) I've been doing better than I have in 2 years. One of the greatest satisfactions of the whole ordeal is I can now prove that the problem was not a psychological one and all the depression I had was a result of pain and professional ignorance. I've been able to resume a bunch of classes and I'm managing the pain with OpanaER and Dilaudid for acute episodes. My doctor, along with my old local neurologist now believe that my migraines were secondary to the nerve compression on the two nerves as a result of the head trauma and now that the area had been broken up and treated with steroids to reduce inflammation, I should continue doing better for awhile. I left a lot of the gritty emotional struggles out because frankly I'd rather not dwell on them. This could have been a lot longer, but even I'm bored reading through it. Nice to meet you all.