I am a newbie to Sjogren's. But I have been experiencing intermittet migraine-like headaches that last exactly for 24 hours. Sometimes they are accompanied by nausea/vomiting. The headaches are around the eye sockets and forehead. Plus I get tension pain down my neck into my shoulders. Does anyone else experience this with their Sjogren's? If you do/did, and you take Plaquenil, does the medication help for this? I am going back to see my Rheumy in September to give her an answer as to whether I will start Plaquenil then (after I complete the battery of baseline tests before then). Did you find that diet exacerbated the headaches? I'm trying to find out why I'm getting them... I also noticed that my body temp was low during the headaches, even though you could feel a warmer temperature with your hand - like an inflammation.
I had these type headaches and nausea when I was first dx'd. They were part of the reason for the pain I was in at the time. Also the neck and shoulders tension and pain. I don't think Plaquenil cleared mine up, I wasn't on it until after I had taken Predisone for a few years. However, the Plaquenil did wonders for joint pain and muscles.
I still take the Plaquenil but not Predisone except for serious flares. Plaquenil can be stopped without tapering down. May I ask why you seem to be hesitant about taking the Plaquenil? The baseline eye information isn't that involved and the benefit from the Plaquenil can be quite good.
Hi Scrapbooker!
I'm a fellow headache sufferer and also a fellow scrapbooker!
The headaches you describe are exactly what made me finally seek out a Sjs specialist. They we coming everyday - from the moment I got up until I went to bed. I saw the specialist for the first time 2 years ago, and he finally confirmed that, in my case, the headaches were definitely Sjs related.
Before that decision was made, I underwent a number of tests - from brain MRIs and CTScans, sinus Xrays , eye exams at a large Eye Hospital in Philadelphia (who originally diagnosed my Sjs) and more. All other possibilities were ruled out.
I also had migraines, which responded to migraine medicine, but these other headaches didn't.
What seems to really have made a difference for me is a combination of infusions of Rituxan, a rheumatoid arthritis medicine that's shown success in Sjs patients, and the medication Lyrica - although I notice the biggest relief immediately following the Rituxan.
My family doctor prescribes Fiorinal for the headaches I still get. (She prescribed it before I started seeing this rheumatologist, so she continues to prescribe rather than my rhemy).
I would definitely talk to your rheumatologist about the headaches. You may not need to go as far as infusions (I've has Sjogren's for a number of years that went under treated by my local rheumy, so the specialist has had to make up for my "lost years"), but you definitely need to find some relief.
I hope scrapbooking helps you relax, which is another big factor in these headaches. I see a massage therapist 2 times a week, which has also helped tremendously.
Best of luck and I hope you find relief VERY soon,
Tracy
Thanks so much for your responses. I appreciate it. I'm soo glad I have an answer to what has been ailing me for so long.
My hesitation with Plaquenil are the rare side effects of medications. Although I know they are rare, I am not a person who believes in overmedicating and taking too many prescriptions - after seeing what happened to other family members for various other conditions. So by listening to everyone who has taken it, it seems like it is worth the shot. I already had a complete eye exam and retinal exam last year and need to get a new one this Summer (along with the other baseline tests).
I will definitely discuss the headaches with the Rheumy when I see her again in Sept. Please continue to give me your suggestions and so forth. Thanks again!
Hey Scrapbooker (aka Chrystyna)-
I had no idea I was actually talking to someone I knew! I'm sorry we've had to meet up again here (meaning that you've gotten Sjorgren's, NOT that this is a bad place to be!) but as I said in my reply to you earlier today off list, you will find SO much help here.
As for the Plaquenil, I didn't mention it last night when I replied, but I've been on Plaquenil since 1997 and I've had no side effects. I know everyone is different, but I also believe quite a few people here on the list have gotten real help with it.
I'm sure if you were to have any problems, your doctor could stop it quickly and find something else to help.
Best of luck to you and maybe I'll see you at the Creating Keepsakes Convention at the end of the month. I'm trying to save up every ounce of energy I have so that I can make it to the convention. I've even arranged to stay with a friend from PA Scrappers, and am going down the day before, so I can relax between the long drive and the event.
Take care, Tracy