Discussions By Condition: I cannot get a diagnosis.

Debilitating Headaches / Lupus

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • July 15, 2008
  • 09:19 PM

I've been suffering from chronic headaches/migraines for a year now and cannot seem to get a handle on them. Some have lasted for as long as 32 days and they are extremely debilitating. The symptoms first started a year ago whem my temples started swelling multiple times a day for no reason (to the point my glasses no longer fit on my face). I then developed migraines (rarely light or sound sensitive, but severely motion sensitive, and often tingling throughout my face). I do feel the tension in my neck and it comes all the way through my jaw.

Now, I am displaying silimar symptoms to an exertional headache as I can barely walk 20 steps without having to take a break as the pain get so severe in my head. I feel the pressure build up and the migraine come on (like a needle through the top of my brain). If I push myself too far, I will bring on a migraine that will last for days or weeks. I cannot do any activity: stairs, dishes, ...I even have to pace myself to go to the bathroom. Also, exciting conversations, movies, or scenarios such as someone cutting me off on the road can make me sick for days. I need help.

I was diagnosed with Lupus (SLE) three years ago but all my doctors and all my bloodwork have confirmed that my Lupus is quiet.

All brain MRIs and scans have come back normal. We've tried most all medications. Imitrex injections work best when the pain becomes too severe but I can't shoot up forever and furthermore, I am limiting my life and activites and I cannot go on like this.

Please, any advice.

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  • Hi...I'm so sorry for your pain and the serious impact this is having on your life. I also have SLE and have suffered from migraines for years and years - some that have lasted for days and days and sent me to the emergency room. Some where I thought sure I was going to die; and some where I wanted to die. I am currently taking 50mg of Topamax twice a day and Relpax at onset of migraines. I still get 1-4 migraines a week but the Relpax will generally work within an hour. (and for me, Relpax is a miracle drug)How long have you been taking the Topamax? I had a lot of tingling problems (especially in my neck, face, head) for the first 6 months or so and on the higher doses (along with added cognitive issues that I didn't need :) before we settled on the 50mg 2x/day. My neurologist still talks to me at every visit about upping the dose to try to lessen he number of migraines I still get but I really don't want the added complications.One of the other really really big things I did about 6 months ago that has helped a number of my symptoms (I was having lots of issues) - including the number and severity of my migraines - was going on a completely vegan diet. I stopped all meat, all dairy, and even all sugar, coffee, wheat, oil and other additivites. For the first couple of weeks I only ate raw fruits and vegetables and then after that I added in grains, beans, cooked vegetables, and made my own non-wheat bread (in a bread machine). It was somewhat a change in food prep for us but it's been worth it and food actually tastes way better now too.I had fewer headaches, fewer bowel issues, more energy (which we'll take whenever we can get it!), and even the fatigue was less (which is a huge huge problem for me). Anyway, the difference in the headaches was noticeable - they aren't completely gone but the change in diet has been worth it. If nothing else, have you ever tried a food elimination diet? I'm not saying that food sensitivities are the primary cause of your migraines but if you can even lessen the migraines by a small percentage, if might be worth it....(one other thing - are you seeing a neurologist? mine did say that my non-responsive 'migraines' probably were not migraines but vascular headaches that were Lupus related...that's all I remember about that...)take care and I really hope your headaches get under control...I understand how totally they can rule your life...Melanie
    Anonymous 42789 Replies
    • October 5, 2008
    • 03:55 PM
    • 0
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