Vestibular Migraine - Can anyone relate to these symptoms?

Hello There I am new to this site. I have a few diagnoses but have had vestibular migraine added to them and would be really interested to see if anyone can relate to my symptoms as I am so desperate to find something that helps.

I am constantly dizzy but its not vertigo but a constant swaying feeling and if I am standing and not leaning against something or holding on to something solid I feel like I am going to fall over and have quite a few times. I also have POTS (postural orthostatic tacychardia syndrome) and low blood pressure so can feel faint too and the pots was originally thought to be the cause of my dizziness but I am now on treatment and my dizziness is still there. I do get headaches but not often but never lose the off balance feeling. When I stand its when I try to focus on something or someone that its really bad and I feel like I'm falling backwards. Supermarket lights I find make my symptoms really bad too as do places with lots of movement around me. Two specialists have said its vestibular migraine and I have tried propranolol, amitriptaline, pizotifen and serc but all have increased the dizziness and made me feel really out of it. I am now trying feverfew, Q10 and magnesium but its early days on them.

I haven't come across anyone with the same symptoms and sometimes wonder if it is migraine.

Any advice would be really appreciated.

Many Thanks

Jenny

22 Replies

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  • Hi Jenny 😆 welcome. I had constant dizzyness/ confusion and even memory loss on a few occasions.

    I was incorrectly diagnosed with hemacrania continua and suffered terrible multiple migraines a day for 19mths. Tried every dizzy tablet and every migraine med out there and so many alternative machines etc only to discover my jaw caused it all !!!

    I have TMJD have a look at the symptoms see if it's familiar.

    I'm sure someone here will be able to offer advice. Take care

  • Hi Cally

    That's really interesting thank you. I do have problems with the left side of my jaw and the last time I went to my dentist and had to keep it open wide while I was having a filling it got sort of stuck and made a horrible noise when I eventually closed it. I have hypermobility syndrome and the joint seems loose. Can I ask have you lost the dizziness and if so how did you get treated.

    Thanks Jenny

  • Hi Jenny, Yip!! I know that well 😆 happened to me on every visit to the dentist. I'd have to push my jaw side to side just to close my mouth again. When you close your teeth, run your tongue round your teeth, i could get my tongue between a gap all the way round, never once felt my bite was right.

    Your dentist can confirm if you have TMJD.

    I ended up seeing a maxillofacial guy who confirmed i had no cartridge on the left. I didn't grind/ clench, just stuck and made pop noise but only i heard it.

    Had a tmjd athrosentisis but it didn't work as my jaw is locked . Left me with a loud pop/ crack noise.

    Now in early days of a thing called cerezen and what a difference.

    My jaw is now straighter, my teeth close and the dizzyness left when this happened. I'm on my third week and so far so good 😆

  • Thanks Cally have been putting off going to the dentist as it was sort of scary so will definitely go and discuss now.

    Thanks Jenny

  • Definitely get it checked out asap. If i could turn back time i would try cerezen first. Avoid ops if you can.

    It has a money back guarantee too 😆

    Let me know how you go 😆 take care x

  • This may be completely irrelevant to you, but - I had a lot of dizziness with migraine and a neck injury, which became constant: it improved with several things: when I stopped taking aspirin; got my ear canal infections treated properly (although I still get slightly dizzy when my ear canals are blocked or get water in them); got treatment for B12 deficiency; stopped eating gluten. I still have migraine but with less dizziness, nausea and sickness.

    So you could try getting a test for celiac disease, B12 deficiency (Pernicious Anaemia) and getting your ears checked out, if you haven't done those things already.

  • Thank you, I am on a gluten free diet but have come across the B12 deficiency cause before so will definitely investigate.

    Thank you

  • Had anyone else in your family had same symptoms? I'd get your GP to refer you to a neurologist as it may be spinocerebellar ataxia, which is what I have with same symptoms among others x

  • So sorry to take so long to reply and thank you. I have a neurologist and this hasn't been mentioned I have had MRI's though which have shown nothing which is why vestibular migraine was given as a probable diagnosis. No one else in my family has anything similar either x

  • Hi there, I have been posting about this issue elsewhere. I relate to a lot of these symptoms. I have a form of vasculitis and that has caused my symptoms. I have had jaw pain, face pain, scalp pain. Feeling seasick and losing balance. Vertigo. A lot of symptoms. It can last for days on end and doesn't respond to conventional migraine treatments.

    I would want to be checked for vasculitis/auto immune disorder. I don't know if you have other health issues. Some of us have a multitude of symptoms going on but others have quite limited involvement. But if you are having these kind of migraines I would recommend seeing an immunologist or a specialist in vasculitis in order to rule out other causes of your migraine.

    There is such limited understanding of this area and it is often not on the radar of a gp. There is no blood test for it you see. And it is complex and rare. So often it is left undiagnosed or misdiagnosed as something else. I struggled for a long time to get a proper diagnosis.

  • Hi Magirose

    Thanks for your reply. Its very interesting because I do have vasculitis, sle and sjogrens. However vasculitis as the cause of my dizziness was ruled out as when it started as my steroids were increased to no avail and my crp and esa levels are normal. My vasculitis is thought to be under control and has been for a few years. I do have hypermobility syndrome also and POTS and it is this that was thought to have been causing my dizziness but now the medication I am on has got those symptoms under control bit the dizziness just won't go away. POTS is caused by a dysfunctional autonomic neuropathy which I do wonder if the damage from the vasculitis caused but so difficult to find the cause when there are different diagnoses.

    Can I ask what type of vasculitis do you have?

    Many thanks

  • Hi...this is the old problem. You are told your bloods are fine so it cannot be the vasculitis. I was told same. They would not offer further treatment. So I went to a different consultant. I am now on a medication regime which controls all of these symptoms.

    I was diagnosed with Behcet's 12 years ago. I took part in a drug trial years ago which was interferon alfa. It made me feel totally normal. Symptom free. They would not prescribe it again. I got worse and worse. They kept on saying my bloods were normal. But that does not mean there is not an inflammatory process still going on.

    I changed my consultant. He prescribed interferon. I have been symptom free basically for about 3 glorious years now. Had a wobble recently when we tried recucing interferon. First symptom to return is really bad vertigo.

  • Oh and by the way....interferon was increased again and symptoms went away within a week including vertigo. X

  • Thanks for that, I was on mycophenolate for 4 years which calmed my symptoms down as I had peripheral neuropathy, numbness, memory issues, extreme tiredness and purpura rashes/bruising. I am seeing my vasculitis specialist next month so will discuss.

    thank you

    Jenny

  • good please ask them about this....they are dreadful for not attributing these symptoms to vasculitis because your bloods are good but they should know better. I would also suggest to you if you are in London or an area where he does a clinic, there is a great guy called Desmond Kidd who is a neurologist with an interest in vasculitis. He diagnosed my problem as being related to inflammation. Great doctor. He does see people as a visiting consultant at other hospitals. Can't remember where but if you google him you'll find him. He writes a lot about these symptoms and how they relate to vasculitis. Good luck. x

  • Thank you for this, did your inflammation show up in an MRI? I have had a number of MRIs which come back as normal but a lumbar puncture some years ago showed CNS inflammation? Have just googled Dr Kidd and will see if I can get a referral.

    Thanks Jenny

  • This makes me angry to be honest....if you showed CNS inflammation you should be treated accordingly. Sometimes we get such poor treatment! No I have never shown anything on an MRI scan. All completely clear. But Dr Kidd said ...as we all know inflammation doesn't always register but we have to treat the symptoms anyway. Despite that he referred me back to my then specialist with that verdict. They did nothing. My lumbar puncture was likewise nothing to note. But I then changed specialist. For your information, and if it was something you were in a position to do, I got a referral to a Vasculitis unit in Cambridge and see David Jayne there. He has been brilliant and moving to a new hospital was the best thing I ever did. The treatment for this condition is so patchy. Some people who should really know better are not helping us.

  • oh and I should add, Vasculitis UK are a brilliant support group. They have a free helpline and are always able to give you good advice about where to go for treatment etc. They also have a great help group on Facebook if you are a user of fb. You can look them up and request to join. People on there are, like here, very resourceful and helpful. x

  • Thank you for your time and advice, really appreciated. I think I am complicated because I also have hypermobility syndrome and POTS and because my vasculitis symptoms were under control when the dizziness became a daily problem the issue was never clear cut. I also have very low blood pressure on standing just to confuse the issue further but my dizziness through POTS and low blood pressure feels like a faintness but the other dizziness is more like a constant swaying feeling. I have often been in contact with vasculitis uk thanks and yes they are brilliant. Thanks again Jenny x

  • Thank you for your time and advice, really appreciated. I think I am complicated because I also have hypermobility syndrome and POTS and because my vasculitis symptoms were under control when the dizziness became a daily problem the issue was never clear cut. I also have very low blood pressure on standing just to confuse the issue further but my dizziness through POTS and low blood pressure feels like a faintness but the other dizziness is more like a constant swaying feeling. I have often been in contact with vasculitis uk thanks and yes they are brilliant. Thanks again Jenny x

  • Hi Jenny! I read your post while searching for information from others on migraines and you mentioned having POTS. My daughter has been told she has POTS, OI or SVT. She started having headaches last summer so we went to her GP and then to a neurologist who prescribed all the usual preventive and abortive medicines and unfortunately she got no relief and some came with awlful side effects. After an MRI in January of this year it was suggested that she might have MS so after many more tests and blood work we continued on with follow up appointments then her second neurologist noticed her resting heart rate was high. He told us to keep checking it at home and prescribed propranolol but that was in hopes of preventing her migraines. She started that in February and her dosage now is 60 mg once a day before bedtime since May. No relief still. She was referred to a cardiologist for POTS. So far the cardiologist hasn't given us a definite diagnosis, just says she POTSY. I was wondering how you were diagnosed with POTS, what tests, any blood work, etc? She has only had a ECG and wore a heart monitor for a month which she recorded 2 events that came back as sinus palpitations. A friend of my has something called Inappropriate Sinus Tachycardia but anyway, the propranolol isn't helping with her heart palpitations either and she had horrible nightmares when she started the medicine which they stopped but now she bruises very easily. I guess my second question is how did you feel on propranolol and are you taking something else now for POTS? I'm really sorry this is so long. Just trying to find help for her in this aspect of her health plus she did get a definite diagnosis for MS in June.

    Sincerely,

    Cathy

  • Hi Cathy, sorry for the delay in replying, I will pm you later. Jenny

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