Behcet's Syndrome Society
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Am I going mad?

I've been been dignosed wit behcets for 6 years it goes up and down. Myajor problem at the moment is callapsing about 1 a weeks and feeling constantly dizzy. The severity goes up and down but it's always there always worse with a big ulcer flare up.

The callaps is a strange thing it's not fainting, as I am consious but I callaps down to the floor my legs go and I can't do anything or talk for about 10 min's until it passes. It's horrid and scary and makes life difficult as I can't really go put by myself. The only thing I would say gat makes all this worse is head movement turnin my head I also get nerve problems down my arm when this happens too. Even crossing the road can leave me really dizzy.

Nobody seems to be able to come up with an answer I am beginning to thing that the mdical profession think I'm mad.

I was wondering if anyone has experienced this or knows anything ???


22 Replies

Hi frisky,

This sounds really scary for you when it happens :-( Have you seen a neurologist and had an EEG and/or any other brain scans?

Joanne Z.


Yes I've had mri and have small amounts of white matter but nothing to worry to much about. I have bad migraines and that showed up in thr mri.

I'm booked into see a nuroligist soon. I hope someone somewhere can just let me know what's going on...

Thanks xxx


I'm glad you're seeing a neurologist -- it sounds like some kind of neuro issue to me, but that's up to the experts. Hang in there!



Thanks xx


Hi Anna

Sorry to hear from you under such worrying circumstances. I agree, I would see a neurologist even if it is just to be reassured.

Cheers Lesley


Hi lesley. ..

Thanks it's very scary and I'm going to be referee to neurologist .. x


In my worst of flares I had a two really bad dizzy spells: one where I was driving and the entire world flipped upside down and I barely was able to find the brake. Lasted about 30 sec to a min. the second when I got out of the shower and walked to my bedroom I just fell over into the wall and couldn't get the world be be straight. held on to the wall for dear life and then it passed after a minute. I know for a fact I had ulcers and at the time I had a yeast problem in my body and I had just gotten done eating a large amount of bread (baguette). We ultimately decided later on that because I had thrush for about a year off and on with severity that the yeast was making me dizzy and I would get dizzy if I ate a lot of carbs.

just a thought. good luck.


That's intestine as I know when I cut put cars I feel much better generally it's just so hard especially when I feel so rough not to go back to go old comfort food.

I don't think the callaps have been brought on by too much carbs that I noticed but I will take note in future.

I do know that if I have anything under laying it definitely triggers them.

Thanks for your help

Anna x


That sounds very scary. Please let us know what the Nuerologist says.

I think I saw an old post of yours about taking LDN...Was that you? If so, I'm curious if your still taking it?


Hi thanks. No re ldn it worked well for about 8 months then it stopped working so I gave up as i was getting bad again and needEd stronger pain killers and you can't take any opits.

I would recommend it because for a while it was great and I feel really good.

Thanks. Anna x


Same here, it worked for 8 months then slowly stopped working well . I've been off of it for about a year and a half so I want to try it again. I'm trying to stay off the pain meds, but between Behcets and chronic migraines I'm at a loss of what to try next. I love Ldn just for the lack of side effects. I tend to be hypersensitive to most meds so I always get the side effects, I wish you well...keep me posted.


I also get server migraine and the ldn helped me with migraine really well I did t get any while I was on ldn.

The side effects for me were sleep related I don't sleep well anyway so it wasn't that bad. I had insane dreams which were quite entertaining.

Good luck let me know how you get on.

I think I may try ldn again see if the brake will kick start effect again.

Good luck

Anna x


Thanks for your feedback. I also had vivid dreams which were not too bad. That got better as time went on. I'm currently having issues with my GP, he doesn't want to write a prescription for it. I want to take LDN instead of Imuran. I'm just so tired of all the side effects of the meds.

Good luck to you and I'll keep you posted as well.


Same thing happens frequently to my daughter. No one can tell us anything including her neurologist. Off to Mayo we go


Hi Frisky. I have somewhat similar symptoms, in that I am dizzy nearly constantly and at times have to hold the wall for a short time. I usually end up sitting down or leaning against the wall for a bit until it passes. I did fall over on two occasions which was not real fun. I have seen the neurologist on two or three times and to date there is no resolution. I also have white matter and evidence of swelling showing on the MRI scans. I wish I had a solution or answer for you but I do not.

Can I ask you if you have any issues with your ears?


I do have problems with my ears and have had bouts meniars in the past. I was wondering if it was a more extreme version of that. Xx


Behcets lesions on your brain. Have a CT or Mri


I've had mri and it just white matter mederate changes from the previous one 3 yrs ago. Nobody seems to be that concerned about it so I'm guessing all normal.


Do you have Kaiser ?!


Kaiser... :) I have dealt with them in the past. For me, the doctor called me at 7:30 AM Saturday morning with test results when I showed with MRI white matter lesions. She thought it a big deal and sent me packing to a cardiologist who put me on all sorts of meds. They explained to me that its not common in younger people but it is more common in older 70+ (or there about) adults.

I tend to wonder, since I have been scanned multiple times with no resolution, if its something related to my ears. Also my hearing is affected to a limited degree. I will be looking at "bouts meniars " soon. Maybe this is an answer.


Hi Frisky, when you had MRI did you also have MRA that shows the blood vessels?

Included I had MRI upper spine because I had neck pain. Showed loss of lordosis, so straight neck instead of normal curve. Showed bulging discs & facet joint arthritis.

Oh also had Flexion/Extension x-rays of neck.

I presented once at ER after an episode of sudden onset global weakness, no dizziness, no loss of consciousness. They treat this like you have had a stroke or stroke-like episode & therefore admitted me to a 48 hr assessment ward.

My first brain MRI was to investigate long history of headaches & migraines. Plus family history of father with vascular dementia.

I have a few non-specific hyper intensities too. Consistent with migraines but also seen in people with high Blood Pressure my Neuro said.


I was diagnosed with behcets disease in 2010. North western Hospital did the biopsy. I get ulcers in mouth, tongue. throat, vaginal area , inside lower stomach I get inflamed ulcers size of small balloons. hurts when i talk, swallow try to brush teeth, hurts when i urinate excruciating intolerable pain!!! My muscles hurt, i feel week at times, I was walking straight ,& started walking to my left uncontroling, I have seen with me eyes black dark spells. I applied for disability on Dec. 22nd 2015. I am working part time. I have no other means for money to take care of my 2 young children. I am so worries i cant continue working part time! Im also afraid I am going to get denied! Im also on meds for depression ,& anxiety. I have a letter from my psychologist stating my diagnosis for behcets syndrome, my mental state because of the debilitating disease,& my limitations from sitting , walking, lifting, talking,ect... that she said. I shld be entitled to recieve disability benefits. I hope Doctors took good notes because a doctor, a gynecoligist, & a gynecoligist specailist also seen everything thats been going on with me. Has anyone going throught the process, or has already been through this know what percentage of having behcets, & getting approved for disability benefits are? Sincerely, Ann Marie Witting-Gonzalez

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