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#1 smurfette


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Posted 22 July 2008 - 12:48 PM

For several years have had migraines including lines in my field of vision and nausea. I have been on Topamax 24/7 and when there is breakthrough I take Imatrex. I had them before menopause, but I have been warned by women to expect all kinds of changes during and after menopause so I thought maybe it was that and would be over in a few years. Since I am menopausal for a few years already, I don't know wether to attribute it to that or my sclero. In any case these lovely headaches can keep me out of circulation for several days. Even my hair hurts. I have been told that Imatrex is not good for Sclero patients so I would like to know what other people do about migraines if they do have them and are managing them successfully.

Chocolate, It isn't just for breakfast anymore!

#2 smac0719


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Posted 22 July 2008 - 01:48 PM

I first experienced migraines when I was pregnant with my second child. I couldn't take anything due to the pregnancy so needless to say they were hard to bear. After the birth, they subsided. It was many years later when I developed them again. I took Imitrex as well. A few years later and after a bout of Bells Palsy the headaches got worse. I took Topamax, Neurontin and many other drugs before finding that Fioricet worked the best for me. Sometimes they got so bad I had to do IV therapy. The crazy part about that was the medicine made your head hurt worse before it made it better!!

I haven't had one in a while (i'm finding some wood to knock on) but the last time I had one Exedrin migraine worked for me. I get in a quiet place, put a cold compress over my eyes and put my head below body level (usually hanging off the side of the bed). I wouldn't wish a migraine on an enemy. I hope they get better for you.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 tintin


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Posted 22 July 2008 - 02:15 PM

I am in the same boat, and have had an awful time finding things that worked. Fioricet works for me as well, however I only use it if I am desperate as you can develop a tolerance for it. As preventives I take beta-blockers, and Flexeril. I have generally found that anything that raises nitric oxide makes it worse and anything that lowers it helps.

This is not too good as nitric oxide helps keep your vessels dilated, something that is probably good for SSc.
keep on smiling


#4 Piper


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Posted 22 July 2008 - 03:45 PM

Hi, I have had migraines with aura since I was a young child. I finally was able to almost eliminate them through diet avoidance ( chocolate, red wine, nitrates, & aged cheese) and I also take elavil and a beta blocker ( not good for raynauds) daily. When I occasionally get one I take a pain medication and go to bed. I don't know if there is a connection between them and slcero or not. I'm not diagnosed yet, I just have alot of symptoms.
I hope you find something to help yours.
Hugs, Piper

#5 lizzie


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Posted 23 July 2008 - 02:00 AM

H I Smurfette, I have had migraine for many years. I think there is though tto be an association with connective tissue disease. I used to get migraine really badly and very frequently - they used to last for up to 3 days. They made my life miserable. Am now menopausal and has been some improvement - not as frequent. I take Sumatriptan( which I think is Imitrex?) when they occur and that makes a big difference - can genrally keep functioning (albeit less efficiently). The are not so good for the Raynauds , but its not as though they are a daily medication - and my rheumatologist is quite happy for me to take them when necessary. I also take calcium channel blockers and although I thought these might make the problem worse , I actually seem to have had less attacks- could just be coincidental.
Hope things improve for you soon- Migraine is truly disabling.
Yours sympathetically

#6 CraigR


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Posted 23 July 2008 - 05:11 AM


Your's sound like classical migraines - what with the the visual disturbance ("scintillating scotoma") and hair aching. The other common symptom I've heard of is need to be in the dark (photophobia). I point this out because I've heard people refer to any severe headache as a migraine, and that is mistaken.

My father had sclero (CREST) and had these headaches. He took a vasoconstricting drug called Caffergot, but that was decades ago so there's sure to be better stuff now. I can remember these well from my childhood, as I would come home from school and all the blinds would be drawn and my mother would whisper to go outside and play, as my father could not stand any sound.

My understanding is that these headaches occur following a vessel constriction to the head. The headache comes on when the constriction lets loose and the blood flows as it should (sort of strange). This would be why vasoconstricting medication would help (though be bad for Raynauds).

This would suggest that if you could prevent the constriction to begin with (perhaps with a vasodilator) the process might be stopped or reduced. But I'm not a doctor.

Since it is a vascular headache and sclero has other vascular symptoms (Raynauds, pulmonary hypertension, etc.), it certainly seems they could be related.

I also have sclero (CREST, actually CRST), and it accompanied with epilepsy! (very easily controlled). There is a very distinct aura. It is sort of a mixture of tunnel vision and a sense of doom. Though never diagnosed, I believe that my epilepsy is caused by the same vascular process (there are known cases of seizures caused vascularly). It makes perfect sense.

I read in a medical book ("The Etiology of Epilepsy") that there is a much higher rate of epilepsy among people with Raynauds, which points to a likely vascular cause. It's even more compelling with migraine.

More reasons why you have to be your own doctor at times. They usually aren't very imaginative if the issue isn't life threatening.