New member, long-term migraine

Hello
I have been lurking here awhile and thought it was time to introduce myself.

I have had migraines and headaches since age 8 (now 40). I have also had lots of weird things ... Random pain, emotional "problems," difficult pregnancies (2), etc. Ten days after the birth of my second child in 2007 I got a crushing migraine. Beyond anything I had ever experienced. It was all-consuming pain. Whole head, ears ringing and screaming, neck ... Noise, light, motion, everything made it worse. Things seemed to have a yellow and pink aura and my head felt full of crystals. It was the "lemon crystals" stage of the migraine which has become my life. I have had this everyday, all day, since it first hit. The pain has changed character a few times, and fluctuates in intensity, but rules me. I went on disability after a few months of trying to work after maternity leave. High stress computer job, just not possible.

I have seen multiple neurologists, had many tests, many treatments and medicines. Nothing has worked or given me hope. Indomethacin helped for about a week a year ago, and led to a Dx of hemicrania continua. Since it no longer has any effect, even at high doses, I don't take it. Currently I take:
Verapamil ER 360mg (might be keeping the worst at bay)
Levo-thyroxine (for Hashimoto's thyroiditis ... Feel my dose is too low even though the numbers are "normal"
Nortryptilene 10mg (just started two days ago ... Actually slept!)
Tizanidine 2mg (started four days ago ... Might be starting to help intense neck and shoulder pain)
CoQ10 800mg (helps with fibromyalgia pain a little, not migraine)

I was treated for bipolar most of the last 7 years as well. I went to a new pdoc last spring who managed to really screw me up ... Took me off everything cold turkey to put me on 9 (!) new meds. Felt great for three weeks, then started having random convulsions. Three weeks of those getting worse and I landed in the ER one night with intense whole body convulsions on going for hours. ER docs told me to stop everything except L-thyroxine. Took weeks to stop convulsing daily, and still have trouble. Been virtually bedridden since. My GP says it is fibromyalgia. He's a good guy, listens, gives a crap. My neuro wants me to see a pdoc again ... The continued convulsions and facial spasms/tics are psychological manifestations she says. Huh.

My current migraine is an average level 6, with some ups and downs. Worst in late afternoon and evening, but often really nasty for a short time after getting up. Neck and base od skull seem to be a source, as well as jaw pain. I will often have stabbing jolts of pain beginning at the top of my head or right temple. My pain is all over my head, but more on the right usually. Scalp and skin are super sensitive - pretty much shave my head because my hair makes me crazy.

Body pain varies and moves, sometimes minute-to-minute. Fatigue is intense. Insomnia. Surprisingly, since going off all the heavy psych meds, I have had no real mood issues! All my worst times were when I was taking that stuff.

I tested negative for Lyme recently, but know the test is not really reliable. Have also considered Hemiplegic Migraine ... Non of the types really fit, though. Have seen a headache specialist, and though she tried, at the last visit before she retired she said she didn't see many more options. Appt with new doc in Rochester in five weeks. She is supposed to be good.

I follow a vegan diet, no processed anything. Wondering about cutting out gluten, but not sure if I have the energy. Money is very tight or I would pursue acupuncture ... Local guy has eased my neck pain in the past, and that makes a difference. Only thing I have that works right now is a hot shower and heat pack. Oh, and my sweet doggies, who stick to me like glue when they see I am particularly bad :) I have a great family ... Never complain about what I don't/can't do, and adjust themselves around what I can accomplish. They are my heroes.

Any words of advice or commiseration are welcome. I hope to be able to enter my two cents from time to time to help others out. Glad this exists!

-Berdine

Hello Berdine

I am also new and saw your post. I've been suffering migraine like headaches for the past year and a half. It started a month after I started school in July of 2012 and has not stopped once. from the moment I awake to the time I take my pills to help me sleep. I've tried everything and nothing works. The pain is a level 9 now, it was a 7, 5 month ago. My doctors are giving up on me left and right, and my insurance won't pay for most things. I'm mostly bedridden and for the life of me can't get on a normal sleeping schedule. I don't really have pain in the rest of my body, other than normal creeks in the back and neck, but my memory and emotions are affected.

My main question is, how do you "live" with it? I'm 24 years old and in a deep depression because of the stress of the pain. It's taken over my life, my relationships with people, everything. I try so hard to be normal, and smile but it's getting harder.

Thank you for you words. I'm sorry for all the complaining, that's what I feel like I'm doing that all the time now. Just knowing I'm not alone in this kind of messed up pain is a comfort. I am seeing a doctor who is dedicated to headaches but my insurance will only allow them so much wiggle room. I had a fight with them a couple of weeks ago about a nerve blocker that they have, but they have to send in a request for it. When I called my insurance, they said they didn't get any requests from my doctors. When I asked them about it, they said they stopped sending requests to this insurance company because they kept saying no and it "cost money" to do so. It enraged me so much.

The Cleveland clinic is in Ohio right? would they talk to someone from Oregon I wonder? I understand it's not the doctors fault. I don't really blame them too much, but it's really easy to do so. To get so mad at them for giving up.

I really admire you for living through so much, for so long. Thank you again for your kindness.