Vestibular migraines

Thank you so much, so I have a very large fibroid (I'm talking melon size) currently under review but have had various scans of it and they don't think this is to blame, causes a back ache at times but didn't even know i had it til I went to the Drs for the light headed, dizzy and odd feeling, other than that nothing. I am obese but again not been linked to that and when it happened was losing weight, hit a plateau now because the dizziness is hampering me. Had hearing tests all fine, balance tests showed I have bad balance but he puts that down to the vestibular issue. I haven't told anyone but am reaching the end of my tether with it and feel like I'm losing the will to do anything, I can't look forward to anything just in case you know!? Cheers for the help

I can't help but wonder if it's something like lupus or something my symptoms seem to be so widespread not sure whether to go back and ask for some more specific tests as I just don't feel I've got to the bottom of it.

Yes could be. For me it is Behcet's ....similar. i can tell you where to go for diagnosis. Let me know if you are in uk or elsewhere. X

Sorry I mean I have Behcet's but for you could be Lupus or another form of vasculitis. X

Yeah I'm in the UK, I had a particularly bad but this week just when I thought it was starting to calm down. It was very debilitating at first so I was coming home from work. Just started one day as my head was spinning and I went all hot

Yes I get your symptoms. Do you have any fkushing on face or upper tors do you have problems of dryness...eyes...mouth? Do you have ibs type issues or any skin issues?

The flushing would indicate Lupus. Dryness could suggest Sjrogren's or ulceration Behcet's.

You need to have your inflammatory markers checked as this indicates inflammation. You need to have ana checked but you certainly need referred on to a particular specialist. Probably an immunologist would be most help to you.

If you are anywhere near London a referral to Dr Desmond Kidd at the Royal Free in Hampstead would be ideal. He is a visiting specialist elsewhere too.

I have flushing which seems to make its way up from the pit of my stomach to my face it's the oddest feeling, ibs like you wouldn't believe, fine for weeks but then on a particular day out of the blue I've rushed home from work sometimes because I just can't cope! You must be the only person in the world who has said they understand these symptoms!

Yes flushing I understand I get it but don't have Lupus. Does it feel like top of your head is about to blow off. Goes up through you?? I am laying bets you have Lupus. X

And wondering if heat makes it worse? Humid weather? And also the IBS.....bloating windy stomach. Randomly....not associated with particular foods?

Not so that I've noticed with the weather. I began a food diary at the start of the month on the instruction of the ENT consultant but I've noticed zero pattern, was tested for coeliac too but it's not that, tested for diabetes too but not that. The ibs is more like bad diahorria litreally all of a sudden, only perhaps once a month, all the above things come and go and are never all at once, I feel like my doctor thinks I'm crazy and has once before mentioned that I could be stressed! I know my body, and I feel like this is something in me as opposed to the whole balance thing, surely that would cause me joint pain and aches and the rash I had.

Yes it all sounds so familiar to me. The only thing is I feel awful in hot weather. But that is different for lots of fellow sufferers. I know lots of us who react to cold weather. Some of us unaffected by temperature changes.

Anyway...I recommend you ask for a referral to a vasculitis specialist and try for a proper diagnosis. You can start by asking your doc to check your inflammatory markers and ana. They are indicators for auto immune disease.

I also suggest you speak to Vasculitis UK they are great at reommending specialists in your

Sorry in your area.

By the way...blood tests are often inconclusive. Scans rarely show anything. This is a super difficult disease to diagnose if this is what you have. This is why your gp can't diagnose it.

Hi Amanda. This could also be linked to auto immune dysfunction as that quite often attacks internal organs like the gallbladder. You should discuss this with your endocrinologist. Though to be fair, I saw one who was unable to diagnose Behcet's for me even though I had all the key symptoms. 😑

I actually have gallstones forgot to mention before, do you think they could be causing me this much grief? I have been having a couple of pains in that area but everything else seems to be so widespread!

hey my sweet, the gallstones convince me even more you have an auto immune disorder going on. Auto immune disorder attacks the internal organs. Gallstones can be one of the gastrointestinal manifestations of auto immune disease. I just don't think this is causing all of your symptoms. As you say, too many widespread symptoms to be related to that. 

Problem is no one will ever say that to you. At time of diagnosis I was seeing an endocrinologist at the request of a specialist who was trying to diagnose me. He came back with IBS. He had nothing to say about my condition. All tests were clear. When we discovered I had Behcet's and I pointed that out to him he said he had never seen anyone with Behcet's and wouldn't know how to diagnose it! 

This is the problem you'll be faced with. There are only certain specialists who can diagnose these sorts of disorders. Blood tests are usually little help. And brain scans will usually be clear. It is not a neurological disorder. The structure and function of my brain is 'pristine' according to a neurologist. 

The problem is the symptoms are caused by inflammation in the blood cells. That doesn't show up on scans. This is why it is normally diagnosed on history. Very difficult disorder you are dealing with. 

By the way we have endless discussions in our help group online about 'do you think this is related, do you think that is related'. The answer is probably yes to everything. 

Since I got an effective treatment guess how many symptoms of disease I have now? Absolutely none. I am often a bit more tired than other people. I can live with that. 

IBS symptoms, migraine symptoms, joint pain, by and large fatigue, tinnitus, blepharitis, horrific migraine almost continually, dizziness, bloating, muscle pain, pain in back, neck....all of this has been gone for three years. I have had some breakthrough symptoms recently which is flushing. I'll take that any day after what I was suffering before and hardly able to stay awake for 6 months when I was at the height of my 'unwellness'. 

Thank you you've been very helpful! I can't believe how long it's been going on, I was angry at the time that it had gone on longer than a month and here we are a year later and it's making me so sad. I think I will go back and lay it all out on the table again and ask for one more reassessment before I ask to see a different doctor, had quite a bad vitamin D deficiency before and even that was never linked to anything, all my symptoms seem to be being treated individually

yes that is what happens. Vit d defficiency another classic sign. What you must do is just point blank ask for a referral to someone who can rule out Lupus as a cause. You have a right to that. Can't remember if you're seeing a specialist or not. If it is your gp then ask them to refer you on. Say you have a complex history. Explain all the symptoms you have. If you have joint pain demand to be referred at least to a rheumatologist. They might see you have something inflammatory underpinning this and yet they are not even always great. 

Yes!!! It can cause pains all over your stomach as well as back and chest pains. Migraines also! I've been undiagnosed forever and my GI believes this is causing everything! i also have been running high temps! Do some research on gallbladder symptoms as well as gallbladder migraine. It's worth seeing you're doctor about!

I think that even if gallbladder stones could cause those widespread symptoms I wouldn't be confident it would cause the flushing like Lupus. I think that everything would need to be ruled out and would ask for auto immune disease to be ruled out too. x