I went to the ENT today because I have been waking up with headaches. Part of the pain I think is my neck (Fibromyalgia) but the biggest part is sinus's. Family doctor told me to take Nasonex but that wasn't doing anything. The ENT gave me a fast acting shot of Decadron and then put me on Prednisone for a week. My sinus's are totally clear but dry. That along with allergies are giving me Migraine type headaches. He said not to use OTC sinus meds because of the Sjorgrens and making my eyes worse (already figured that one out after I used them)! Is there anyone else going through this? What else do you do for bad sinus headaches.
I was diagnosed with Sjogren's while trying to find out what was causing the terrible headaches I was having. Sometimes they presented as sinus-type headaches, other times, they felt like every muscle in my scalp was in spasm (and I had no idea how many muscles there were to spasm!). I was seen by an eye doctor at Will's Eye Hospital in Philadelphia because they'd found a small lesion behind my eye, and my family doctor at the time thought it might be the cause of the headaches.
The eye doctor took one look at my eyes, did a Shirmer's test, and said I had Sogren's which was causing the headaches. That was 2001 and I started Rituxan in 2007 that helped at first. But just recently, I had to find a new family doctor for insurance reasons, and I had a really bad week of what I'd been told by other doctors were migraines. Up til then, my family doctors had all prescribed Fiorcet to treat the headaches...I was taking 4 a day.
My new doctor said that they were actually Cluster Headaches a few weeks ago, my doctor perscribed a low dose of Verapamil (brand name Calan). Surprise! Not only did it end that round of cluster headaches, but the number of Sjogren's headaches I've had has been cut about in half for the first time in 8 years, and instead of daily headaches that would hit when I first woke up and make it impossible to even moveuntil I got the medicine down and waited 45 minutes, I've only had a few that responded almost always to just one Fiorcet.
I've taken every allergy medicine on the market over the years and the only one that ever had even a slight effect on the headaches was benedryl. It might be worth asking your doctor if it would be worth trying a beta-blocker like Verapamil. I tend to have low blood pressure, but I'm only taking 120mg, and it hasn't made any difference in my blood pressure.
I hope this might be of some help to you. I'll be sending good thoughts for an answer your way,
Tracy
QuoteThat along with allergies are giving me Migraine type headaches. He said not to use OTC sinus meds because of the Sjorgrens and making my eyes worse (already figured that one out after I used them)! Is there anyone else going through this? What else do you do for bad sinus headaches.
My allergist and ENT have me doing sinus washes every day (I use the NeilMed netipot). I find it helpful. My right sinus is the more problematic one (re-deviated septum probably a big contributor). I also run cool mist humidifier 24/7.
Recent months, I am not using any nasal sprays. I found that for me, even the Ocean and NasoGel was messing up my sinuses and nasal passages worse.
Migraines - I've had migraine flares for years (flare and remit - go figure), BUT when SJS announced itself, I started having migraine-like headaches that were debilitating - more so as my migraine med (Maxalt-OD) did nothing to alleviate them which in effect flagged me that whatever these headaches were - wasn't migraine.
As it turned out, it wasn't sinus or migraine at all, rather my greater occipital nerves. Neuro treated with nerve blocks (1 each side). Concurrently, I also was sent to PT and placed on cervical traction. Neuro called it occipital neuralgia. And yes, much to my chagrin sure felt like migraine but different and also felt like sinus pain - only it wasn't either in my case.
Allergies: even with SJS, I take Zyrtec every day (the NON-decongestant Zyrtec). Allergist recently added Singulair as in his view, my asthma was not well controlled. Neither seems to exacerbate dryness for me. At least not noticeably. Actually, it would appear that the Singulair is helping with systemic inflammation ironically.
Also, re: allergies - I use the Merv grade 10-12 (subject to availability) filters in airhandler/furnace. These pull out more of the fine particulates out of the air. I have both indoor and outdoor allergies and that level of filtration I find very helpful.
I hope this helps with some ideas at a minimum.
Amanda