I started having migraines in my early teens - had them about 4 times a year until my twenties. By my mid20s I was having attacks at least once a month and generally around my cycle. By the time I hit my 30s I was having them at least 2x a month and a little in to my 30s at least 3x a month. By my 35th birthday I was having attacks at least 4-5x a month. And then as of January 2008 - constant - but the pain changes from moderate to severe.
I've always had indicators - ears ringing, gray spots growing to block out vision in one eye, or sparkly lights before the pain started. Now that it's constant, I get those indicators when it's about to get a lot worse.
Before they were constant they lasted from 3 days to 2 weeks.
So, early on I did nothing but deal with the pain, hole up and use ice and try to get through it. When they got to be monthly, since near my cycle we (drs and I) tried high doses of aleve around the time the pain was going to start and heavier meds - like stadol - when it got severe. Once they got more often, I started down the path of all of the imitrex type meds - they would work at first, but eventually wouldn't work at all, I would have to be switched to a new one - Relpax, Maxalt, Frova, Imitrex, etc - about once a year or longer when they stopped working. The new one would work for a year or less and then stop working. This with my regular doctor before I saw a neurologist.
Then, I went to the nuerologist. All kinds of tests were run, we tried a lot of different preventative meds - some with some success and others not - nortryptaline, topamax (read dopamax cause you get stupid on it), visteral, nameda, propanolol (lowered my blood pressure too much) etc. For attacks, I used axert and imitrex. I went in for shots when it was really bad, worked the first time, didn't the second, third time they added something else to the shot and it worked, fourth time, didn't work so we gave up on the shots.
Then came in the insurance company and cut my supply of imitrex, et al to only 4 pills a month. Well that became the beginning of the end. I was forced to have migraines that went untreated. Which allowed the migraine to settle in. (They say it takes 3X the amount of meds to get you out of pain once it's imbedded then if you take meds at the start of the pain!) To prepare for my wedding I went on the week before a dosage of steroids every day plus Frova - got through my wedding great and most of my honeymoon but not all of it.
Then came the constant pain - the one that hasn't ended. We tried the things I stated before and then went to another specialist neuroligist that works with my neurologist - who also has a migraine specialty - the new specialist put me on IV treatments - 4 days each time and we did it twice. The IV treatment would reduce the pain, but it came back every night or by morning when I woke up.
So, next we went to hospitalization here in KC. Constant IV - DHT, steroids, pressure point injections, a lumbar puncture, more scans of my head and neck and I don't remember the rest of it. It didn't work. They did find vasospasms in my brain and a small blockage in my neck. With that I was put on Verapamil for the vasospasms and went off all imitrex type meds.
So, next I was referred to either the Diamond Clinic in Chicago or Michigan Head Pain & Neurological Institute. I went to MHNI - they had success and taught me a lot. Went through many, many more tests. I had neck nerve blocks twice which worked for a day and then pain came back. I was there 3 weeks and they tried various meds and combinations for preventative and abortive until we found a mixture that reduced my pain. I left with a 1-2 on a 10 scale and kept that for about six weeks until I went back to work and my life and then the pain went back to where it was before - staying between 6-8 with jumps to 10s. My doctors here have continued to modify my mixture of meds seeing what works best as preventative and abortive. I also had more pressure point injections, another nerve block and then a nerve burning (not the technical term but was supposed to last up to six months - it didn't work).
I now also see a massage therapist once a week who does a migraine head massage only for about an hour which gives me relief during the massage but pain comes back within hours and never is fully gone. I also see an acupuncturist who has been able to really reduce the pain for a couple of days after treatment but then pain comes back.
My neurologist was concerned I wasn't sleeping right even though I was sleeping a lot - not getting to deep restorative sleep because pain continued while I slept and I started having more episodes of "Sleep Paralysis with Hallucinations" something I'd also had since a teenager which get worse and more often in times of stress. But, I never connected them to migraines. Turns out they are a symptom of migraine with aura as well as a potential symptom of narcolepsy.
So, I was referred to a sleep specialist with a migraine background - worked at MHNI for 5 years - and I did a sleep study (tortorous) and came back with a diagnosis of narcolepsy for which I am now on Provigil - it's been 3 weeks of that.
Other medical conditions my team has to muddle through along with migraines: 1 - hypothyroidism severe - was not diagnosed until my 20s because I've always been thin and they didn't think of it until I was put into a mental ward for depression - it was regulated fine from 25 - 36 and since then has been acting up and I just had another blood test - normal and regulated 6 months ago, but is back out of whack and they have to increase my synthroid again now - that will start next week. 2 - vasovagal syncope - my heart is "allergic" to adrenaline - if I get too much adrenaline pumping due to nervousness or pain or whatever, my blood pressure drops to almost nothing and I pass out and go into convulsions but come to within 20 seconds and after 20 minutes am back regulated again and ok but tired for awhile after. 3 - familial tremor - my hands shake and sometimes arms and legs but my mom has this too and they say may get worse. I was being treated for it but lowered my BP too much so we are ignoring it for now and focusing on migraines. 4 - low blood pressure - apparently common amoung migraine sufferers. 5 - anxiety attacks. 6 - I know I'm forgetting something and 7 - now possibly narcolepsy although maybe not but the provigel should help anyway with my sleep patterns and seems to be working and not harmful - I haven't had an episode of sleep paralysis since taking it so less scared to sleep at night and less tired.
Meds I'm currently on
Synthroid; visteral; verapamil; keppra; chlonepen; baclofen; thorazine; skelaxin; provigil; toradol shots - not all every day some just as abortives. yes, I've tried indomecithin (sp) and it didn't work.
Herbs/vitamins/supplements
CoQ10, magnesium, D1000, calcium, mutlivitamin, Bcomplex and B12 shots once a month, as well as Rice Sprout now which has natural CoQ10 and Bs that are easier to digest.
That's the most of it although I'm sure I've left things out inadvertently.
Hanging in there and my team of doctors and therapists are vowed never to give up on me which helps - I'll never hit a point with them where they say they give up and there's nothing else to do. I am very lucky to have the doctors I have. I also see a therapist once a week to deal with chronic pain management.
This Too Shall Pass - Hope Springs Eternal
Elizabeth
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