Behcet's Syndrome Society
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bad heads!!!

Iv been waking up about 5am with right bad heads lately...some go away, others are blinders that stay all day.. Iv taken co-codamol since I was 18 and they have always worked for me, however the past few weeks they dont seem to touch my bad heads..

Iv also got a wee blister/ulcer on my right eye that isne painful but a bit irritating..and iv been getting a weird lumpy red angry rash like lumps/spots down the sides of my face...itchy as heck!!!!

I have been to see my specialist today and Iv to have a scan at Newcastle...has anyone had any similar experience with bad heads and scans!!???

I am a wee bit worried.. but to be honest I just want the constant bad heads to do one...!!

5 Replies

I have had headaches for many years including migraines. My gp prescribed amytryptiline which has worked. Hope this helps.


thats what iv just been prescribed too!!! How long before you go to bed do you take them???, I took mine at half nine but I feel a bit groggy the day... thanks x


Hi Dawnie

I woke up with a whopper a week ago (including a very sore right eye). I usually manage to sleep it off in 24 - 48 hours (along with plenty of pain killers).



I wish I had the option of staying in bed...although sometimes when they are very bad which thankfully isnt often i cant even speak never mind get out of bed!!! so I totally feel where your coming from lesley!!!

Having alfie whos five, is the main reason for me trying my best to look as positively as possible at BD.. that and my part time job which I love..


Hi dawnie2750,

I was diagnosed a year ago, and it was the headaches that were proving one of the most difficult symptoms. No pain killer ever helped, but I used to put a bag of ice on my head and neck and this used to kind of numb it and make it more bearable.

The headaches cleared when I started treatment with prednisolone after I was diagnosed and began seeing a rheumatologist.

I also have the face rash you describe-so sore and itchy. This has recently returned, having cleared with prednisolone. I haven't found anything to soothe this sorry. I have this week decided to try applying the myrrh tincture which I have previously used as a mouth wash to help with ulcers, to see if that will help.

I'm still waiting to find an immunosuppressant that works for me (currently taking mycophenolate, just increasing the dose and jury is still out), still managing things primarily through prednisolone and now colchicine as well.

I had a CT scan on my brain to check for clots as headaches had been going on for so long. It was very straightforward and didn't involve feeling claustrophobic in a tunnel. Results came back clear, so the inflammation hadn't caused any damage.

Hope this helps. And hope you're feeling better soon. Some days I felt that there would never be life beyond the headaches, but I've realised with BD that everything seems to pass eventually.


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