New member, long-term migraine

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New Member

Date Joined Mar 2014
Total Posts : 2
   Posted 3/29/2014 9:11 PM (GMT -6)   
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!


Forum Moderator

Date Joined Apr 2012
Total Posts : 7438
   Posted 3/30/2014 9:35 AM (GMT -6)   

welcome to the forum.

I can say that "stuff" from the past will effect our pain levels.

I have had cluster head aches since high school. 3 years ago I went to a therapist to learn how to deal with daily pain. Turns out I was sexually, physcially and emotionally abused for 15yrs by my family.

I still have daily head pain, not as bad, cluster pain is decreased by about 60%. Mindfulness is a great help in staying present and working through the pain.

I see a neurologist at Jefferson in Phila.

We hold things in from the past, they have to come out some how. I did not believe it at first. However denial is a wonderful thing to be in at times.

Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain; raynauds;complex PTSD; recurring MDD,disassociative disorder;

New Member

Date Joined Apr 2014
Total Posts : 2
   Posted 4/3/2014 6:39 AM (GMT -6)   
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.

New Member

Date Joined Mar 2014
Total Posts : 2
   Posted 4/3/2014 7:43 AM (GMT -6)   
Well, I wish I could be all positive for you, but the truth is that until you find a way to lessen the pain, your life will not be as it was. I spent years in denial, too sick to be aggressive in getting treatment. Having a baby was incredibly tough, and my husband took on much of his care ... Which took his attention away from helping me. A person only has so much, and I am glad that our son was well-loved during that time. My in-laws were super. They took the kids for weeks at a time, which was so helpful. I would tell you to stop going to any doctor who is not specifically dedicated to headaches. Get in to a place like the Cleveland clinic if at all possible. There is also a Dr. Bernstein who wrote "The Migraine Brain." She is taking new patients, and will be my next step if this current new doctor doesn't help me. It isn't really their fault ... These things are not normal, triggers are incredibly complex, they are taught nothing of nutrition, and you may have a type of migraine that is rare and seldom seen. Or, you may have a couple types of migraine on top of each other, each requiring different treatment. Start now making detailed daily notes about pain, meds, weather, barometer, water intake, food, auras, triggers, sleep, fatigue, periods, ANYTHING you can think of. I use the lumen Trails app on my iPad because I can really customize it. I am seven years in, and just finally got ticked off enough instead of being in denial or greiving my past life. Take matters into your own hands. I know it hurts. I know it will hurt worse doing the reasearch, making calls, all that. Do it now, though. There are people who can help you, but you have to find them. Regular doctors won't know who to send you to, so you have to be your own best advocate. I am really sorry you are in so much pain. Be kind to yourself. Hugs!
Chronic migraine/Hemicrania continua, fibromyalgia, PCOS, Hashimoto's thyroiditis
Verapamil ER 360mg, Levo-thyroxine 37mcg, tizanidine, nortryptilene hcl
CoQ10 800, B Complex, zinc, melatonin 10mg

New Member

Date Joined Apr 2014
Total Posts : 2
   Posted 4/3/2014 11:42 PM (GMT -6)   
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.
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