Headaches

[MikeG-2012]

My latest flare up was all sinus. The headaches were excruciating and I was on three different pain meds to make it so I was at least somewhat functional. Some of my headaches were 9/10 on the pain scale. I have an extrremely high tolerance for pain, so a 9/10 is nothing short of me being comatose.

After the RTX infusions, my sinuses are getting better and I don't have the bad headaches like I was having. They still come now and then, mostly when weather is taking a major turn. Now they Max out at about 5/10.

So headaches are certainly part of my wegs complications.

[annekat]

I only remember having really bad headaches right before diagnosis. My whole eye area and face were tight, with what felt like hardened, swollen veins. The doc in the hospital didn't talk to me much about this because he was focusing on my lungs. I know my maxillary sinuses, the ones under the cheeks, were inflamed and red. I imagine the headaches were from inflammation in the frontal sinuses, as indicated above. I have never felt worse than I did right then. Since, I haven't had headaches to speak of. But I don't doubt that this could happen when tapering pred. For me it doesn't, so far... instead, I get a temporary Wegs rash on my forearms, some moderate joint pain, and a little more general fatigue.

[Pete]

I only remember having really bad headaches right before diagnosis. My whole eye area and face were tight, with what felt like hardened, swollen veins. The doc in the hospital didn't talk to me much about this because he was focusing on my lungs. I know my maxillary sinuses, the ones under the cheeks, were inflamed and red. I imagine the headaches were from inflammation in the frontal sinuses, as indicated above. I have never felt worse than I did right then. Since, I haven't had headaches to speak of. But I don't doubt that this could happen when tapering pred. For me it doesn't, so far... instead, I get a temporary Wegs rash on my forearms, some moderate joint pain, and a little more general fatigue.

Hey Anne,

Have you had any tooth pain or sensitivity that could be attributed to maxillary sinus inflammation?

Thx!

[annekat]

Pete, I did have tooth pain and sensitivity along with gum inflammation around the time of the big flare that got me diagnosed, when the maxillary sinuses were inflamed as well. I hear that tooth and gum issues aren't uncommon with Wegs, whether related to sinus inflammation or not. All these issues were taken care of with treatment. A year later, I did have to have 2 wisdom teeth and 2 molars extracted because I had neglected to have the wisdom teeth removed much earlier, when they should have been, and they rotted and the rot spread to the neighboring molars. This probably would have happened anyway, but I suppose could have been helped along by Wegs. No tooth problems at present, and the remaining molars and wisdom teeth appear to be OK at this point.

Hey Anne,

Have you had any tooth pain or sensitivity that could be attributed to maxillary sinus inflammation?

Thx!

[Debbie C]

I get headaches when the climate changes. If it is in between rain and shine or if we are getting a real bad cold spell. And a killer headache last week that kept me in bed all day.I would make a great weather person !!

[vic flange]

The only issue with pred tapering is if one does too much too fast, then headaches can occur cuz the inflammation can increase again slightly, thus giving one a headache (kind of like blood rushing to an area)...literally and figuratively!

That's exactly what happens with me. I'm on 4mg a day now and have been for about 6 months. Just lately though I've had very intense headaches right along my brow.

I'm seeing my rheumatologist soon and I reckon he'll up my dosage again.

[LisaT]

I've been having brutal headaches--more like an ongoing headache that either lurks or flares but never fully goes away.... At times it is bad enough that I think it's a migraine. It feels like a tension headache/muscular but I don't know how to be sure. As far as I'm aware, I have nasal and throat issues but not sinuses. Does anyone know whether brain imaging to rule out wegeners in the head is part of the standard assessment/treatment? None of my drs (GP, rheumy, respirologist, two ENTs, second rheumy consult, cardiologist) have suggested or ordered it (?!? Wtf pardon my French), but this thread makes me wonder... I've told every one of them about my worsening headaches and if I have systemic inflammation it seems that it would make sense to check my foggy brain too...

[annekat]

I hate it when docs don't want to deal with new symptoms or those which vary from the straight and narrow path they've been operating along.....

[windchime]

It feels like a tension headache/muscular but I don't know how to be sure.

Lisa where is your headache located? Usually tension headaches are felt at the base of the skull and can radiate up over to your forehead. Usual causes are being on your computer and looking down. Looking down at your tablet and phone for lengthy periods of time. These I have first hand experience with. Do some neck stretches and try a warm wrap or heating pad to the back of your head. You can get wraps that you throw into the microwave at most drug stores. The heat will help relax the muscles if they are tight.

With all that being said I would still mention it to my doc. I don't believe it's part of the standard assessment as wegs of the brain is rare. There are a few with it on here, but it's still rare. It could also be a side affect of one of your meds.

[Alysia]

I've been having brutal headaches--more like an ongoing headache that either lurks or flares but never fully goes away.... At times it is bad enough that I think it's a migraine. It feels like a tension headache/muscular but I don't know how to be sure. As far as I'm aware, I have nasal and throat issues but not sinuses. Does anyone know whether brain imaging to rule out wegeners in the head is part of the standard assessment/treatment? None of my drs (GP, rheumy, respirologist, two ENTs, second rheumy consult, cardiologist) have suggested or ordered it (?!? Wtf pardon my French), but this thread makes me wonder... I've told every one of them about my worsening headaches and if I have systemic inflammation it seems that it would make sense to check my foggy brain too...

I had terrible headaches when I tried to reduce my pred.
I also went to neurologist who sent me to MRI to rule out brain involvement. the MRI was ok.