Behcet's Syndrome Society
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Blackout balance problem

I want to know if anyone else has experienced this problem. Yesterday while out shopping as was having a "good day", I looked up a top and suddenly went black, I was only our a couple os seconds, but when I came to I couldn't get my balance or stop feeling extremely dizzy. The episode lasted about 2 hours, basically I fell asleep then when I woke up I felt ok?

I've woken up today feeling normal???

Last week I was advised to double my normal steroids dose as had been suffering badly with everything inflamed.

Was very scary, so was wondering if anybody else had, had anything like it.


15 Replies

Hi Anna Hun,

Look Hun, I don't want to worry you but I have had the type of blackouts you describe here.

It turned out that I had idiocyncratic intercranial hypertension which translates into a surplus of fluid (in my case water) on the menengis which is the covering of the brain between the actual brain and the skull. THIS IS VERY DANGEROUS. I was extremely lucky to have had a consultant who spotted this quickly and put me on very strong doses of water retention tablets which worked quickly and the blackouts stopped. The actual blackness part was due to the liquid pressing on the optic nerve and the pressure made it all black. That also improved rapidly and I recovered very well apart from some leg problems that would be of little interest to you in this instance.

I don't know enough about how these things actually work or if other bodily fluids do a similar sort of thing or even what they would do to sort it out but it was just impressed upon me by the specialist that this was a serious warning signal and should it reoccur for any reason, YOU MUST seek help ASAP.

Like I said....I really don't want to frighten you but PLEASE find out what is at the bottom of this sooner rather than later. Okay ? Better safe than sorry in this case Hun !

Take care, big hugs xx


Will the excess water show on MRI? Because I've had a brain MRI & it showed all was normal


Hi Hun,

Just picked up your reply to this post that was four years ago.

In reply to your question, I believe the answer is NOT NECESSARILY.

Because mine was caused by water, there was just enough inside my head to show some inflammation but it is hard to differentiate between swelling and water in this area.

If you have a problem like this then time is of the essence and you need to get to see someone very quickly before it gets out of hand. Please don't try to self analyse these types of things as the consequences can be very serious indeed so PLEASE go and get to see a neurologist asap to put your mind at rest okay ?

If you cannot get immediate access to a neurologist directly and you are experiencing blackouts like this then go immediately to your local A&E department and they will get you looked at quickly which is the most important thing.

Sorry I can't be much more help to you.

Take care,

X xx


Thank you for your reply. I have been now seen a nurologist and and migraine specialists... I have now been told it's a form of vascular migraine causing these problems, it's good to have ananswer and it toik awhile to find and answer. The problem is everything that goes wrong gets put down to behcets GPS don't seem to see past that. Being a vascular problem it's all linked in together.

Thanks for you message.

Anna x


Great news Hun !

So glad you found the answer to what was happening to you. I often think that is the most frightening thing of all and once you get an answer that makes sense it all seems to seem much easier to cope with. It is our own imagination that can often get the better of us in situations like this and we start imagining all sorts of nasty things don't we ? I know I am one of the worst ! Lol.

Take care and stay well okay ? Mwah !

X xx


Thanks, I feel have a rare illness is like wondering aimlesslyin the dark. It's so scary when you know so little bit mich more tjan most gps and a&e staff know less and doctors hate it if you know more.

I hope you're well at the moment and enjoying the excess of chocolate..

Anna x


Thanks I will call an ambulance if it happens again. I've had MRI brain scan and also seen an eye specialist recently. They came back pretty much ok, other than having migraine.

Am also seeing get behcets specialist next month and will tell him..

Thanks for for you help.

Anna x


i been having blackouts for 10 years ih has all been blam on behcets but latley it has been invastigeted by pro fortune it turn out is mnicturation snycope mean hart is geting slow bet wihiule pasing water i have so many fainting episod i hane split cin and i have lose most of tooth gl bur investigate


My OH gets that, Micturation Syncope tends to be more common with tall men that go for a wee during the night. he was advised to sit down as he passed urine.

He does get syncope at other times too, when he is tired or dehydrated.


Hi Anna,

I have exactly the same problem to the point where I can't look up even as far as to get something from my kitchen wall cupboards. I had a Doppler scan done on my neck (carotid arteries) and was told that they are very twisted and when I stretch my neck to look up they kink like a hosepipe would and stop the flow of blood to the brain. I often get extremely shaky afterwards and have to sleep to get rid of it. Go and see your GP and have it investigated as it might not be something as simple as mine. I hope all goes well for you, let us know what the doctor says. Take care, Sal x


Hi Anna

I to have been having "blackouts" recently this is new to me too. I have had two to date one getting out of the bath, which due to my mobility problems my husband has to help me in and out so fortunately he was on hand to catch me, very scary for him though. I didn't call an ambulance either as I came around quickly but did visit my GP the following day. He advised an ECG but unfortunately the ECG machine was broken and has been for a while now. The second was during the night after I got up to use the loo, I was fine walking to the loo and fine walking back from the loo, when suddenly I got very confused thinking where the light was then suddenly down I went again. Again just like the first black out I was sweating profusely and had a really bad headache and felt totally exhausted for the whole of the next day.

We (my husband and I) went back to GP and this time an ECG was ordered. I went back for the results yesterday he said that my heart was "sluggish" in parts whatever that means and has referred me to a cardiologist. Not saying this is anything serious as the blackouts are not that frequent, but it is always wise to get this checked out. My GP said if it was to happen again then to get an ambulance not just to go into hospital but as the carry all the up to date equipment, they can see any problems as they happen not waiting until the next day to see a GP. Logical really, like you I am reluctant to call an ambulance (thats for ill people lol), but I think if it was to happen again I would consider it.

Take care and make sure you get checked out.



I have a similar problem to 241sal063

If I raise my arms above my head to get something out of a cupboard or stand up having been on the computer for a while. I go very dizzy and get a feeling of preasure up my neck and into my head and a wooshing sound in my ears. I feel like I am going to pass out but never actually do....not had it confirmed by tests but it is thought to be coming from the neck.

The other blackout type symptoms I had some years ago was TIA's which are a sort of warning for an impending stroke in the brain. I lost part of my eyesight and memory after this happened and was finally diagnosed with neurobehcets about 1 year afterwards.

It really is something you should get looked at and not left until it happens again as you may be in a situation where it could cause something far more serious...such as crossing the road or driving, walking upstairs etc.

Even if you just get it logged with your G.P so if it does happen it will be taken more seriously when it does.

I hope it doesn't, but it is always best to be prepared



I have had blackouts for a number of reasons over the years. Not frequently but it has happened. I sometimes get them after I have had a high carb based breakfast (even plain toast, or porridge will do it....only eggs stops it happening, or not eating at all), then go out shopping. The going in and out of shops in the winter from freezing cold to hot, can cause me to feel faint and overheated and then sometimes I get a drop in my sugar levels (this was tested before) and it turned out I had hypoglycaemia.

Other reasons for me blacking out have been dehydration, lack of nutrition or very high fever. Sometimes it has been medication. Occasionally it has been something to do with my menstrual cycle.

My Oh blacks out with micturation syncope (standing then passing urine) when he has a fever, when he is dehydrated or very hungry, and has had a couple of unexplained blackouts that were noted down as fits.

There is such a variety of possible causes for blackout symptom, that it needs checking out at the time it is actually happening or very shortly afterwards.

You might scare yourself assuming it is the worst of all possible reasons, but until it has been checked out there is no reason to assume it is the worst. Perhaps you need to make sure you have someone with you when shopping, just in case it happens again. And might not be a good idea to drive a car or anything like that. I would keep a note of exactly what you ate, what activity you were doing, and what meds you were taking at the times it happens.


My syncope episodes were caused by extremely low blood pressure (70/40). My doctors had to adjust my medication doses and schedule to stop me from blacking out. The first time it happened my symptoms sounded just like yours, causing hours of extreme fatigue even after the doctors gave me I.V. fluids. I've blacked out at my daughter's school (embarassing her), in a restaurant, in a grocery store, and almost while driving once. It hasn't happened in a couple years, probably because I'm having problems witih high blood pressure now.


It sounds like it is vasculitis at work. Does it happen just during a flare? If so, then it would indicate it is the Behcet's causing it and that you need anti-inflammatories or treatment to tackle the root cause of Behcet's. I get this too and have been told it is intracranial tension and pressure caused by Behcet's. Behcet's is now classified as variable vasculitis.


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