Looking for fellow BD suffers who have headaches, I have just started getting them, although I have had BD for years (just diagnosed last year) the headaches are new for me, the first three came on sudden lasted a little over a day, this is my 4th and its stronger than the other three and I am going on my second day. My question is what is the best course of action with the headaches, this one is almost debilitating for me.

12 Replies

  • Hi Zoie,

    I feel for you as headaches have been a big part of my symptoms for the past 2 years ( I have possible Behcets ). I find that they don't respond to normal painkillers.

    Do you get photophobia and intolerance of loud noises with yours? I occasionally get flashing lights around the periphery of my vision. My headaches are always across my forehead.

    Your headaches are most probably Behcets related migraines. You could ask your GP for sumatriptan or similar. If they get more frequent then sometimes amitriptyline or a beta blocker can help to prevent them.

    I would be wary of taking a lot of codeine or ibuprofen etc to treat them as they can make chronic headaches worse and cause " rebound " headaches when you stop taking them.

    I hope you find some relief soon.

  • Thank you Keyes, I do have some light sensitivity and load noise seems to bother me even with no headache.

    Thanks for the info on the meds. I haven't brought them to the attention of my rheumatologist as of yet , but definitely will at my next visit especially since all I have for pain is Vicodin and tramadol. Which did bring me some relief but I and on my 3 day with this one. It's getting better but still handing a round and now I feel a flare coming up, my mouth is full of sores today.

    I appreciate your reply :)

  • I had a permanent headache some 15 years ago, but didn't have Behcets diagnosis at the time. A neurologist put me on 50mg of prothiaden (also known as "dothiepin" and "Dosulepin"?) and about 1-2 weeks into that my headaches completely stopped. I was told at the time that they don't know why but about 20-30% of people with unexplained permanent headaches like I had respond to a subclinical dose of tricyclic antidepressants. it's an older drug now though and I have no knowledge if it is used in a wider context within BD sufferers....it was just my experience.

    I hope you find something that works for you.

  • Thank you I haven't seen a neurologist , since my diagnosis ( did see one yrs before my BD when the doctors did know what was wrong with me )

    I will look into finding one especially since I have a little bit of a stiff neck with the headache.

    Thanks for your support I appreciate your reply :)

  • Hi Zoie,

    If you haven't seen it yet, here's a Fact Sheet on headaches from the Behcet's Syndrome Society website: behcets.org.uk/information-...

    Hang in there!

    Joanne Z.

  • Thank you I think I have but will look at it again

    Thanks for caring and replying :)

  • I sympathies with your headaches......mine can goes on for days. I'm not sure what medication you are on as I'm on methotrexate and been advised the side affects are serve headaches!! I don't take codeine for any aspect of BD however I've been prescribed tramadol & have been on these for numerous years I find they help me, not sure about Amitriptyline as I'm these too & again have been for years but still get headaches. BD diagnosed in 1998 at the age of 19 but suffered 4 years before diagnosis.

  • I don't have any meds to take specifically for my headaches. Just Vicodin and tramadol which gives a little relief. Thank you for your reply. So nice and comforting to have others who understand and care :)

  • Hi Zoie, I just read your post from 5 months ago about your headaches. I have them too and you're right, they are debilitating, much like a migraine. If I have a bad one there isn't much I can do but cold compresses and rest. If I'm not in a bad flare they still come on when I'm getting too tired. I was just diagnosed this year after years of struggling with symtoms. I have been experimenting with curcumin that I am taking for pain and inflamation. I think it depends on the severity. Where are you located, Zoie? I love in Washington state here in the US.

  • Hi Kat70, I found cold compresses and rest is the only treatment that seems to help as well. I haven't had one lately, right now I am struggling with bad skin ulcers. I live in Southern Californina

  • Ohh, I'm sorry! It's exhausting, isn't it? There is always pain somewhere. Right now I'm struggling with the sites in the back of my nose down my throat. I always seem to have them in my stomach. What are you using on your sores, Zoie? The one goal I've had is to use natural products as long as I can and that gives me the feeling that I have control over something with this nasty disease. Ugh! Do you work Zoie? If you do it must be so difficult with all of the issues we face.

  • I 100% sympathise with you when it comes to horrific headaches. They're becoming more and more of a problem for me every month to the point where they're literally unbearable despite bring maxed out on pain relief medication (can't take anti-inflammatory due to kidney complications). Interestingly the worsening headaches correspond with 2 positive lupus anticoagulant results. Anti-phospholipid syndrome is now being mentioned in addition to Behcets and IgA Nephropathy.

    It might be worth getting another round of blood tests to see if there are any changes? Good luck to you!

You may also like...