Behcet's Syndrome Society
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Cluster Headaches

Well, I went to another neurologist for a second opinion. No one is really sure what in the heck is going on with me. I seriously need a Dr. House!! LOL But, he did figure out that what we thought was Trigeminal Neuralgia causing my facial pain was actually cluster headaches. I read up on it a bit, and it fits me to a tee. So we started a med for that, hopefully it will help prevent them, as it is a god awful horrible pain.

But, it got me thinking. Reading about them, it say they are caused by vascular dilation, but they don't know exactly what causes the dilation. I wonder if it is all related with the vasculitis aspect of behcet's.

I also have damage to my nervous system and we don't know why. So more MRIs to come, maybe a spinal tap. Of course, my guess is neuro-behcet's, I'm presenting like MS, but without any MS lesions. This would be a lot easier with a diagnosis of Behcet's already.

I am going to bring in a bunch of printouts from the BSS for my rheumy next appointment and hopefully he will actually get me a diagnosis, since we've ruled out everything else and I am pretty textbook for behcet's, including pathergy test. Otherwise I'm going to have to go on to rheumy number 3, whoever that may be!

2 Replies

Hi Wendy

That is interesting as I was hospital a few years ago and was diagnosed with Cluster Headaches. I still get headaches now with facial pain. I had a brain scan over 2 years ago and it showed signs of Vasculitis. I was in hosptial again last year for severe head pain but scan was clear. It would make sense that it is all related and I totally sympathise with you for the facial pain, mine is so severe tha tI cannot even bear anything touching my hair at the side of my face! Does that make sense to you. It feels like someone has slapped you really hard across the face or severe sunburn but 10 times worse.

I hate to say someone else understands as that means someone else is suffering but it is good to be able to talk about these things!

Good luck with number 3!





I was diagnosed with Cluster Headaches about 15 years ago, maybe a couple more. This came on top of the migraine diagnosis I've had since I was 10 years old.

It seems logical to me that it's BD related because, as you say, of the vasculitis. It's all very interesting though.


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