Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Headaches

Hi folks. For quite some time now, I've experienced terrible recurring headaches. I had a CAT scan and it didn't find anything. I'm convinced that my AS is the cause. My neck and shoulders hurt all of the time. I take Indocin twice a day. It keeps me mobile but it doesn't stop the headaches. Any therapeutic suggestions? Thanks.

Hi Rob,,
Back up a couple pages and read my post "head pain". Seems we have something in common.

Hi Rob : I went to a rheumatologist 12 years ago at age 36 when the SF49ers ortho dxed me with AS,.He sent me to a rheumy who put me on indocin(indomethacin).I got massive hangover type headaches immediatley. He then tried sulfasalazine ,same headaches , truly blinding headaches.When you get these kind of headaches it is because you liver can't handle it ,and it is poison to your particular system.
Kev

Hi Rob,
Welcome to KickAS. Did the headaches happen to start after you began taking Indocin? I very seldom have bad side effects from medication, but Indocin gave me terrible headaches. I was only on it for a few days (as I recall--it's been over 16 years) and my doctor switched me to Feldene. I've been taking it ever since with no problem.

Connie

Connie,

The headaches started a month ago and have been there almost all of the time ever since. I've been on Indocin for years without any trouble (periodically rotating through other AS drugs -- but always retruning to Indocin). I went to a Chiropractor for the first time a few days before the headaches started. Perhaps the adjustment pinched a nerve. In any event, I've got to get rid of them soon.

Darn! Sorry it couldn't be something simple like the medication, Rob. I hope you get some relief soon.

Connie

Hi Rob, and welcome to KA!! Sorry to hear about your headaches. I used to get them a lot, especially at night, and eventually, was put onto Indocin, and haven't really had a problem with them since! So.......it doesn't sound as though Indocin's the culprit in your case either. More likely to be something that the chiropractor stirred up, I should think! I have neck and shoulder pain most of the time too, and I guess that you probably do have a pinched nerve somewhere. Do you have a specially-shaped pillow for sleeping? I've been using one for the last few years, and without it, even the Indocin won't help.

Have you tried all the routine things like having your eyes tested? (You might need more than a simple eye test. When I had irits a couple of years ago, I was getting headaches and pain in and behind my left eye, but the inflammation was all at the back of my eye, and took some finding! It wouldn't clear up with steroid drops, so eventually, my rheumy and opthalmologist decided to put me onto mtx. Touch wood, I haven't had that problem since, so far.

Has your doc tried any migraine treatment for you? It didn't help me at all, but it's still another possibility.

If none of this helps, perhaps your doc can send you for an MRI - it will show up more than a CAT scan.

Good luck. Hope you can find some answers soon.
Sue

My experience has been I've had tow distinct sorts of headaches. One is almost blinding pain in top of my skull on eaither side of middle of my skull which feels like knifing sharp headache but is actually extension of neck spasm into my foreeadn and eyes.

Second type is duller and I haven't had it in years since bein of NSAID's. It was chronic come and go thing that gave me weeks of dull throb from reduced blood flow or some such thing while I was takin megadoses of Tolectin or Indocin, Naprosyn or Clinoril.

GOod luck in any event.


stevec-they also serve who stand and wait

Sue,

Just curious - you say your inflammation was in the back of the eye? Do you know where??

Drops don't penetrate past the iris, actually, so it makes sense that they weren't working!!

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Kristin

Hi Rob,

First of all I want to welcome you to the KickAS family. Now on to your post. I suffer from migrains. I have since I was 16...when I got out of bed too fast after a spinal tap. Indocine made me very ill so I had to stop taking it. One morning I woke up and the world was spinning. It was terrible. In addition to AS I also suffer from Fibromyalgia. When I am having a really bad flare of the FM then my neck and shoulders just kill me. I recently started going to Physical Therapy which has helped so much and I take a anti-depressant Amitriptyline to help me sleep. Not much else helps but a good night sleep can help somewhat.

Take care and welcome again,

Lisa

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