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JohnWBurns
@johnwburns

Posts: 300
Joined: Jun 02, 2015

Sjogren's and headache

Posted by @johnwburns, Jun 5, 2016

Among my blessings are daily unilateral headaches at or around my left temple. They aren’t accompanied by any classic aura other than depressed mood, which improves when the headache improves. I take modafinil for fatigue due to either Sogren’s, sleep apnea, idiopathic hypersomnia, or all of the above. I didn’t used to get a headache every time that I take modafinil but I do now. I’ll have to switch to ritalin or something else. That’s a side bar tower since I’ve had headaches off and on my whole life including prior to taking modafinil. Anyway, anybody else out there with Sjogren’s who gets a lot of hemiplegic headaches? I don’t use ‘migraine’ purposely since the headaches haven’t been clinically labeled. But if it quacks like a duck…

REPLY

John, I’m tagging a few people here. @jyth takes modfinil to help manage fibromyalgia. I’m not sure if you’ve already connected with @jillnc and @blindeyepug who have recently posted about having Sjogren’s.

John, do you use a CPAP machine for your sleep apnea?

@colleenyoung

John, I’m tagging a few people here. @jyth takes modfinil to help manage fibromyalgia. I’m not sure if you’ve already connected with @jillnc and @blindeyepug who have recently posted about having Sjogren’s.

John, do you use a CPAP machine for your sleep apnea?

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I do use a CPAP machine and all of that has been recently optimized. I forget about the migraines for months and they just reappear, maybe seasonally. Modafinil is a known aggravator so that’s not the question. The question I guess is how many folks with Sjogren’s get what appear to be migraines. It’d be a minor hassle if I could take saids but I can’t due to bleeding issues. Thanks Colleen, as always, for your help.

@colleenyoung

John, I’m tagging a few people here. @jyth takes modfinil to help manage fibromyalgia. I’m not sure if you’ve already connected with @jillnc and @blindeyepug who have recently posted about having Sjogren’s.

John, do you use a CPAP machine for your sleep apnea?

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I hardley ever have headaches.  Even growing up when I did it was related to eye strain (glasses contact wearer).  I’d take a 15 min nap and the headache would be gone.  As an adult I hardly ever get them either. Wish I could be more help.

I have Sjogren’s and migraines. I’ve been taking Cevimeline for years for the Sjogren’s. It seems to help. I also use Biotine toothpaste, mouth wash and oral spray for dry mouth. I use over the counter eye lubricants for my eyes. The over night drops work well for me. When I have a migraine, I take a Sudafed and two Excedrin Migraine tablets. For some bizarre reason, it really works! I pray you get some relief soon. (I also have sleep apnea but do not use a CPAP machine. I raised the head of my bed a bit and that helped me some.

@blindeyepug

I have Sjogren’s and migraines. I’ve been taking Cevimeline for years for the Sjogren’s. It seems to help. I also use Biotine toothpaste, mouth wash and oral spray for dry mouth. I use over the counter eye lubricants for my eyes. The over night drops work well for me. When I have a migraine, I take a Sudafed and two Excedrin Migraine tablets. For some bizarre reason, it really works! I pray you get some relief soon. (I also have sleep apnea but do not use a CPAP machine. I raised the head of my bed a bit and that helped me some.

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The biggest problem Sjogren’s has caused me is neuropathy but the migraines are catching up. I can’t take aspirin or other nsaids due to bleeding problems so I’m waiting for word from the neurologist to find out what might help. Thanks for the feedback.

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