Response to Sue about severe headaches - Behçet's UK

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Response to Sue about severe headaches


I'm sorry you're struggling so much with terrible headaches. Some causes of severe headaches never show up on any tests or scans, even the newer brain perfusion MRI's. It's discouraging not to be believed or told that "everyone gets headaches" when you know yours are abnormally BAD.

Was your neurologist giving you injections for some form of neuralgia? Were the injections steroids, pain blockers, muscle relaxants, Botox, or nerve blockers?

Some Behcet's research suggests that Behcet's headaches should first be treated the same as migraines with triptans (prescription migraine meds), along with pain relievers, and possibly caffeine to reduce blood vessel inflammation and anti-nausea drugs as needed.

A short course of high dose prednisone helps some patients, but this treatment can't be used frequently. Other options could include neuro drugs such as Lyrica, Neurontin, Depakote etc,, as well as pentoxifylline and anti-depressants. If your migraines flare monthly, continuously active birth control pills might help.

The next step up is often drugs that treat your Behcet's inflammation systemically, such as the biologics Enbrel, Remicade, Humira, and that whole family of TNF inhibitors. More aggressive treatments would include immunosuppressants and chemo drugs.

You can do some online searches for Behcet's headaches and discuss these options with a physician who believes you and is willing to help. I really hope you find something that gives you relief. I suffered from Behcet's atypical migraines along with BD neuro symptoms for years, like you, trying all the above treatments. Eventually my headaches became milder and less frequent.

5 Replies

Hi, I too suffer with bad headaches. I ended up in hospital with a flare of BD and even in a quiet room with my eyes closed my head was still banging like a jack hammer. I had 3 different MRI scans which didn't show anything. After a week in hospital taking regular morphine, sumitripan, tramadol, paracetamol and having blood thinning drugs injected into my tummy my headache did settle. Have been left with what I can only describe as a fuzzy head. My sight has been going blurry at random occasions too. Have been home a week now and am glad to say that I am slowly getting better. I don't know what symptom is the worst out of headaches, mouth and genital ulcers, sickness & diarrhoea and abdominal pain, would say that the headaches are the most disabling though. Doc has said that if headaches become more frequent that a preventative might be my best option. Am already taking enough meds daily including Azathioprine and Colchicine. Good luck with your headaches. CG x x

Hi thank you yes I have to admitt the last 8 months I have been getting much worse with headaches and joint problems in shear pain most of the time and now unable to use my right arm properly due to pain.

I am hoping when I return to Birmingham I can be strong and tell my doc about the Nero doc here in Swindon the second doc was quite rude and cold to say the least saying that I should come off all my meds and that every one gets headaches. I was quite angrey by the time I got out she was completely different from the first nuro doc I saw. In October last year ended up in care unit were they first thought I had a stroke as my right eye was smaller and sagging I received letter from hospital stating diagnosis Venus sinus thrombosis and migraine below that, I gave the letter toy specialist whom said it wasn't that. So I just don't know just gonna have to digs heels in like us ladies do.

I hope u get help for ur headaches to.

Oh Andrea made a good suggestion lavender oil I have yet to get se and it could help u sleep.

Take care sue xx


I was hospitialised last year for a week with severehead pain. I had previously had an MRi which showed there was maybe some vasculitis, but this time my scan was clear. I am on Amitriptyline for my headaches which has helped but still get them. They dont debilitate me as much anymore but generally wear me down.

All my sympathies are with anyone who gets these effects. Especially when tests are clear and yet the pain is unbearable.




Hi . I also suffer from terrible headaches that force me to have to go to bed or not to go to work. The pain is so immense that I feel like I'v got a brain tumour or something. My neck also gets very stiff and painful and I feel as tho I'm dying literally.

This is a huge problem for me as I also have a very severally disabled daughter to look after also. My husband is fantastic tho he can't look after her all the time as he also needs to work.

When I feel I need to rest I do


thank you so much for your posts i would say about 98 % of those things i have tried i have even had cryogenics to the back of my head and marcan injection's to the back of my head and all a round my left eye and face . over the years it has never really never given up ( can i ask how do you know if you have neuro behcets ). i will ask my dr about some of the things you have told me and see what we can do

but i do thank you ever so much with your time and help ......if i could get ride of my headache and cronice pain i will feel just wonderful lol lol xoxox be safe my friends

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