Chronic Pain members - Welcome, please introduce yourself

@kathyec I had migraines from my teens up until I completed menopause. I stopped working when my son was born and would have liked to return but I just figured I wouldn't last long at any job because of my headaches. I got them either once or twice a month, each time lasting 3 to 4 days. They coincided with ovulation and menstruation. Nothing seemed to help. Imitrix came out but I read you should not take it if you had heart issues. I have not but since everyone in my family dies from heart problems I figured it would not be a good thing for me. My daughter has unfortunately inherited my migraines though and she does take it and most of the time it works for her.
I did find the headaches were worse with certain triggers and that even in parts of the month when I would not generally get them if I ate certain things I did. For me two of the triggers were definitely chocolate and raw onions. There were others but I forget exactly what now. I did find I could eat white chocolate.
Sometimes I would get a little relief from an antihistamine but "excedrin migraine" never helped.
I hope you find something. I think I was one of the few women who was thrilled to go through menopause. I am glad my daughter can get some relief but it is not 100% generally, and sometimes she has to take it two times. When she has a headache sometimes she calls and I think talking to someone who can be soothing helps a tiny bit. I used to find that too with a woman I knew. She was always very calm, and sort of a slow talker and when she happened to call it temporarily helped. I had another friend who knew the minute I said "hello" when she called, that I had a migraine. No one else could hear that.
If you find anything that gives you relief please let me know, I will pass that on to my daughter.
JK

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@kathyec, I too had headaches for most of my adult life. I didn't want to call them migraines because my mom had migraines. When I was a child I saw how badly she suffered with them, losing job after job when she couldn't go to work and was throwing up in her darkened bedroom for a week at a time. I thought, and was tol by my grandmother that she was just weak, and that's why she was in bed. I took tons of ibuprofen trying to get rid of my headaches in my 30s, and caused ulcers. Finally in my early 40s I had to get help for the migraines. Yes, my doctor diagnosed migraines, and prescribed Butabital for them. I took the pills and they made me sleep, but they didn't help the headaches very much. I was off work for 4 days at a time. A coworker told me about some shots she was taking for her migraines that really worked, so I asked my doctor about them. Instead of shots he prescribed Imitrex. The first time I took the Imitrex I thought I was going to die! I felt horrible, and couldn't function. The second time I took it, I went to bed and slept solid for 4 hours. Then I awoke and my headache was gone! I continued to have migraines and take Imitrex through the years. Then at 50, I had to have a hysterectomy. I was 6 months out before I suddenly realized that I hadn't had a headache of any kind since the surgery. I still haven't had a migraine and I'm 68 years old. I am sure that migraines are related to hormone levels in women and perhaps in men as well. I highly recommend Imitrex or a similar medication. I hope this is helpful.

By the way, I don't recommend having a hysterectomy unless it is medically necessary. My whole sex life changed after that and it was a difficult transition for my husband. We had a wonderful intimate connection before the surgery, but I found it impossible to participate in afterward. We nearly split up during that time. I was allergic to all the OTC preparations to help the moisture issues and it took us some time to work out new and different ways to have intimacy. My emotions have changed as well, and I had to mourn the loss of the soft emotional part of me. I had no choice about needing my surgery, but for any woman considering an elective hysterectomy, I recommend against it.

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Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

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1. How are people getting CRPS diagnosed? I'm a textbook case for the pain disorder but any doctor I've ever seen won't ever touch CRPS, fibromyalgia, chronic fatigue, etc. that's not special for me but rather that seems to be a set of illnesses that doctors in Washington state won't come near.
2. Outside of the above I have a litany of issues that clearly warrant proper opiate treatment (I've shown in the past that doses of around 80mg MME a day triple quality of life) but can't find a doctor in Washington state to even discuss anything other than Tylenol 4. Again, this isn't exclusive to me. What are people to do outside of using the darkweb or flying to Miami?

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Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post