Has any body suffered a seizures with behcets.
Last week I had 3 hours of server fitting and taken to a and e at my local hospital who were totally hopeless. It took seveal hours before I saw a doctor be which time the fits had calmed down.
Frustrated and scared of this new episode.
Yes. I'm so sorry you're going through this 
I included a short section on seizures in my latest book on Behcet's because I had hallucinations for about a year and an EEG showed "seizure-like activity" in my brain. My doctors didn't agree on how to treat it, so nothing was done. The hallucinations stopped on their own (I saw very bright-colored, changing geometric patterns with my eyes closed; the patterns looked like complicated oriental carpet designs).
Here's what I wrote:
(from pg 46, "Behcet's Disease: MyModernHealth FAQs"
amazon.co.uk/Behcets-Diseas... )
"Types of seizures include tonic-clonic convulsions (also known as grand mal seizures, affecting the whole brain); partial seizures, including simple focal seizures where the person doesn't lose consciousness and stays aware of his surroundings; complex partial seizures, where the person may or may not remember the seizure itself; and myoclonic seizures, which are very fast jerks or twitches in a single muscle or group of muscles. These myoclonic jerks can happen to people in everyday life, too; on their own, they aren't evidence for a neuro-Behcet's diagnosis.
"Depending on where a seizure begins in the brain, any of the following symptoms may occur: abnormal muscle contractions; staring spells with or without repetitive body movements; turning of the eyes that can't be controlled; abnormal sensations like numbness, tingling, or skin-crawling feelings; hallucinations; rapid heart rate/pulse; and dilated (big) pupils."
Some BDers with CVT (cerebral venous thrombosis, a blood clot in the brain) may also have seizures.
Sorry to hear about this. Do you live in England? The centres of excellence have neurologists who specialise in behcet disease and its complications. It free for your GP to refer you there. i found Dr Kidd in London centre very good. Not the cosiest manner but very knowledgeable and kind which came through in the letter he wrote.
By the way, Joanne
I was very interested in your reply. I too have had episodes of seeing geometric patters when I shut my eyes, especially when I have been ill in hospital, in the hazy half light you get at night and have an infection also. Drives me crazy as I can't sleep but feel desperately tired. One whole night was like a very early computer style game - blue circles red crosses, green triangles in different patterns. Thought it might be a variation on Charles Bonett syndrome which is associated with much more visual loss than i have. Another time it was a much more elaborate pattern, as you describe.
I put it down to eye/brain problems/ Apparently lots of uevitis patients report blue and red flashing dots which the eye professor thinks is the retina firing off signals to the brain. I get these too when my eyes are playing up but not the repetitive pattern. Interesting that drs looked into this for. I've got a problem with my optic nerve in the brain section, rather than the eye so if I see a neurologist i might be brave enough to mention this. How brave of you to raise it. i wonder if anyone else had had this kind of problem?
best wishes to you both,
Sian
Hi Sian,
I'm at work right now and don't have all my info with me. But I actually discovered the answer to my hallucinations when I was reading Dr. Oliver Sack's book "Migraine." According to his research, the intricate, swirling, brightly-colored geometric patterns seen with the eyes closed (like my situation -- and yours), is actually the deepest of the three or four migraine "levels" in the brain. You don't have to have a headache with it -- I never did.
I actually cried when I got to that section of the book. The full description in the book of what I was seeing was spot-on. Up until then, my docs thought I was crazy and didn't know what to do with me until I pushed for an EEG. And even when they had the results (which indicated "seizure-like activity"), they didn't know what to do with me or what was causing it.
When I spoke with a neuro-ophthalmologist (Pamela Chavis) at one of the ABDA medical conferences, she said it was most probably caused by a lesion in a particular part of my brain. She named the area but I don't remember it right now.
I've only heard from two other BDers in the last 10+ years who said they've also seen these geometric hallucinations with their eyes closed. So I guess we're "special"! (But I already knew that 
All the best,
Joanne Z.
I thought I'd read about that in Oliver Sacks' book "Migraine" 
Interesting.
I have only ever had one seizure & I was very ill at the time with pneumonia & a very high temperature. It was a one minute tonic-clonic (Grand Mal/Generalised) conveniently in the Dr's waiting room so she came out to help me & was able to describe it exactly. When I came to, she was there speaking to me & I think they had me lying on the floor? & I had no recollection of it other than her telling me what had happened to me & that she was going to calling an ambulance to take me to hospital.
I think they did a CT scan & it was OK. Over the phone a Neuro said I wasn't allowed to drive for 3 mths in case I had another seizure.
Now I do fear I may have another. I am not on any medications for it I suppose b/c I haven't had another?
Scary thing was I had driven myself to the Dr's, so could have had the seizure whilst driving. I'm not yet diagnosed with Behcet's. Just got other diagnoses...CFS, chronic Mycoplasma infection, fibromyalgia, widespread arthropathy C-spine, facet joint arthrosis, lumbar spine, degenerative disc disease, patellofemoral OA, spondylosis, kyphosis, treatment resistant chronic depression, food intolerance, chemical & environmental allergies & sensitivities.
It's REALLY scary when your body does things you have no control over
You have so many different diagnoses already... it's probably impossible to say what caused your seizure, or predict if you'll ever have another one.
I know how you feel, though... having more issues like this is always in the back of my mind. Hang in there!
Joanne Z.
thanks Joanne.
Really? How interesting! I will read up on the link.
Last year at the opthomologist that I see every 6 months, I mentioned that when I close my eyes it is like looking into a kaleidoscope every time! Difficult to fall asleep with the bright yellow/orange colors swirling like mad behind my eyelids! Is this similar to how you would describe your experience?He had no clue what it could be. This went on for 6 months + .
Thanks Joanne!
Gen
Thanks so much for your reply, Joaanne .
I do actually have a problem with my optic nerve in my brain rather tan my eye and a neuro opthamologist is getting involved in my care.
The fist night I had this geometric thing was a truly aweful experience (and I have had a few - it was definitely up there with them!).I was in hospital at the time so couldn't get up and do something else. In the end i had a double dose of buccastem which is good for sickness and dizziness which i was experiencing more and more (sometimes used in migraines actually as well) and this knocked me out for a couple of hours before all the activities of the ward started at 6.00! Drs were sympathtic but not very knowleadable about what had ahappened.
Luckily for me I rang the RNIB to order some puzzle books with large text and they were able to reassure me that people with eye problems get all kind of weird eye things at times. When it happened again I was less frightened, but still exhausted by it.
It was so geometric - very weird.
I could look out for the book and if you want to pm with any further info that would be great.
best wishes across the ocean!
Sian
I had one big seizure experience in 2013. It scared me to death. I've never experienced anything like that in my life and I thought childbirth was scary!!!!
Basically I Had tests done and the neurologist found 4 lesions on my Brain. I can't remember all the names of the tests? I have been on daily seizure meds and suffer headaches/migraines, I have a terrible fuzzy memory all the time, I feel like this seizure caused most of it? My neurologist just retired so I'm seeing a new Dr. Oh what joy!!! He's going to test me again. I actually had an EEG Monday.
I also get the flashing lights when my eyes are closed at night. I think that's maybe connected to my uveitis.
I wish you well x
Written on my cell🤓
Omg I get the flashing lights at night too... I can only explain as a brainstorm...
Thanks for your reply.
The local hospital were rubbish and almost treated me like I was making it up!!!
Like I have the energy to fit for 3 hours!
Sorry to hear how useless the hospital were with your seizures. It must have been really frightening for you.
I haven't suffered seizures with my neuro-Bechets (yet), but many other neurological symptoms.
I see Dr Kidd at the Royal Free and the Centre of Excellence. I like him. Yes, he's to the point but empathetic and a very good consultant.
Ooh, and I sympathise with sight problems. I'm gradually losing my visual field in my right eye. It's very upsetting. They haven't told me what they can do about it (if anything) yet. They did say I have at least three new brain lesions, so maybe it's one of those causing the problem!
Wishing you and everyone on here well.
CD (Sam) xx
Hi Sam,
I've met Dr. Kidd a couple of times at Behcet's conferences in the US, and he's one of the best BD neurologists I've talked to so far. You're lucky to be able to see him. I finally gave up on finding a good neurologist for BD here. No one wanted to take my neuro issues seriously. Luckily I only had a year of problems and then it stopped on its own (no meds). That was a long time ago, and the neuro stuff hasn't happened since. Fingers crossed!
All the best,
Joanne Z.
That sucks. So sorry to hear Joanne. It so hard to find a good neuro that'll take your issues seriously.
I have been very fortunate to be getting to see him. He's a good'un!
Hi everyone on this thread and also those who get visual disturbances.
Just found this article on the internet. i thought it was very interesting at explaining patterns etc.
migraine.blogs.nytimes.com/...
I now have more confidence to discuss all this with the neuro opthamologist so thanks everyone.
Best wishes,
Sian
my son has not had seizures thank God, but I am always on the look out. I am scared for him all the time
Hi Sam,
I suffered from one seizure that my boyfriend, now husband unfortunately witnessed. I have no memory of it. The doctor says the way it was described was a tonic clinic seizure. I do have a history of migraine with aurora, but they were unable to find a cause for my seizure. I went for Eeg, and MRI, but no luck. I was started on antiseizure meds anyways. Still have issues with my migraines, but haven't had another seizure.
Does anyone else suffer from this?
Did anyone get thrush prior to Behçet’s diagnosis?
Newly dignosed with Bechet's
Please help me guys :)
Well, you don’t look ill.
