Hi, I have finally been diagnosed with vestibular migraine last month after 5 years of dizziness. My symptoms get worse with all the usual triggers, stress, certain foods, being tired etc, but also looking down for instance doing dishes. My legs stiffen, my heart starts pounding and my dizziness increases. Also while out getting down stairs, on an escalator, getting out of a lift. I wonder if anyone else has the same experience. Can you have MAV and BPPV at the same time, the docs have always said it was not BPPV because there is no nystagmus. All creating a lot of anxiety. I thought the symptoms of MAV varied in intensity and lasted from a few hours to weeks, mine are always the same and constant.
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We’re not doctors so cannot diagnose. However BPPV is’positional’, it occurs in certain positions which vary between individuals. I was misdiagnosed with BPPV for twelve years by several different doctors and one VRT therapist so I doubt some of them can tell anyway! BPPV is short lived, seconds at a time but can recur. There’s no real treatment for BPPV so if you’ve a VM/MAV diagnosis I’d just accept it and try to treat it as suggested and not worry too much. Looking down is often a trigger for MAV and seems to be one of yours too. I remember getting out of a hospital lift bent over double and only just standing. MAV is classed a ‘variant balance disorder’. MAV’s very variable though. Symptoms change all the time and intensity varies with triggers I guess. It’s all very individual. Some people can go snowboarding with MAV, some cannot stand up let alone walk. There are no hard and fast rules I’m afraid. Anxiety will make symptoms far worse. Don’t think anybody would argue there. That could account for a pounding heart and increased dizziness. Helen
Thanks Helen, I am at the stage where I cannot go out alone, supermarkets are a nightmare, I tried going to an exhibition and had to hold on tight to my husband as my legs did not seem connected to my brain and the slightest head movement was disorientating. It took me a while to accept the diagnosis but now I am following migraine diet and doing VRT, trying to stay positive and hope things will improve. Not keen on any medication. Stress seems to be the major trigger for me as my symptoms almost completely disappear when I am on holidays.
Conservative therapy is worth a good go but there may be a point at which you have to dive in to get your life back.
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Yes I guess nobody is happy taking pills but if they work and get you back to your normal life it’s great. I have tried 2 kinds of antidepressants. With the last one escitalopram 10mg I was in orbit for 2 days! I feel that my brain is confused enough at the moment and do not feel like playing chemist with it to try to find what might work.
Yes, finally after 2 years I can use an escalator without any issues. MAV has been a constant daily struggle for me for 2+ years. It can be episodic like you mention, or it can be a chronic daily thing like many of us have. The struggle is nearly over for me. I’m almost fully recovered, but prone to relapses so I gotta be careful. The biggest improvements for me have been medication and lifestyle changes.
I see that you tried an SSRI (escitalopram). I also tried an SSRI (Paxil) before I was diagnosed with MAV and I had awful results. It made me very afraid to try any medications again for about a year. I was also tired of playing chemist with my brain. But eventually I did try a blood pressure med (Verapamil) and then an anticonvulsant (Topiramate) with good results. If you’ve been suffering for 5 years, I’d highly consider migraine specific medications, not just antidepressants, And start on a tiny dose. That’s what I did with both Verapamil and Topiramate. There should be a dose that is so small you won’t feel anything, and then slowly you increase, giving your brain/body plenty of time to adjust.
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Thank you for this, I am glad you found something that worked for you and it is encouraging to know there are different classes of medications that might be worth investigating. As I never take anything (a Paracetamol is an event) I seem to get the side effects multiplied by 10 if I do. I took some blood pressure pills years ago and could not live with the associated hair loss so reduced it by changes in lifestyle.
Yes, and most of us would say that on this forum including me. MAV people are super sensitive to meds because our systems are in a constant state of hyper-awareness and fight or flight. And I also think some of us only need like 1/5 the dose that the doctor prescribes. But we follow the doctors advice and have a bad experience and then we give up, never thinking that maybe the dose was simply wrong. I actually think that if I would have taken maybe 2mg instead of 15mg of Paxil I would have done pretty well on it.
Anyways, I hope you find some relief! It’s definitely awful to be dizzy for so long, not being able to go into supermarkets and such. It feels hopeless and like its never going to get better, but you will see all the stories on here of people that do get better!
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When you get around to moving down the meds route check out Dr Hain’s www.dizziness-and-balance website. He has both a flowchart of preferences and very detailed info on many drugs used for MAV. While you are there. Check out his info on VRT in MAV cases. His site is the most informative I’ve ever found. He’s in good position to assess as his clinic footfall, in Chicago, is big. If you are UK based the commonest first try preventatives used are probably Propranolol (betablocker) and amitriptyline (AD). Helen
You really opened my eyes, I had no idea that MAV people were so sensitive to drugs, I thought it was just me. And I will definitely keep your advice in mind for the doses, it makes a lot of sense. I remember I had to take some benzodiazepine once (unfortunately one of the few drugs I coped with) and I was doing OK on a quarter of the dose but it is very hard to come off it.
Yes the loss of independence in everyday life is hard to take, mundane things you did not even think about are suddenly out of reach. But I am so glad I found this forum, the success stories are inspiring and the kindness of the people is so appreciated.
Hi there. Sorry you are suffering it is a really horrible condition. I have suffered from headaches from a child, first migraine attack at 22, and my first attack of verigo from the age of about 26.Migraines are on both sides of my family but I am the lucky one who gets the vertigo. I was only diagnosed by an ent specialist in March 2017 with MAV and probably had it for years without any treatment. I am the first to admit that I absolutely hate drugs but I am on a low dose of Propranolol. I tried amitriptyline for something else years ago and it didn’t suit me at the time. I am also on a drug for another condition. I also take supplements. Looking down makes me feel worse too, and ironing is horrible, who likes it anyway! Try some magnesium and B2 and hope u get some relief. R.
I have just looked at Dr Hain’s website , there is a lot of very useful information there, will have to revisit and explore. Liked all the info about what works or not, supplements, medications, triggers etc. Thank you.
Don’t forget to check out his section on VRT and VM/MAV while you are there.
Hi there, Thinking back I think I have probably had this for a long time too before starting feeling very dizzy. I always used to think the pain in my head was from my sinuses but apparently it is often misdiagnosed migraine.
I also tried amitriptyline before escitalopram and it did not suit me either. Your symptoms seem very similar to mine, ironing is now nearly impossible (yippee!) doing dishes, cooking, drying yourself after a bath, anything which involves looking down or up. Dizziness causes anxiety and anxiety causes more dizziness and the problem is that after 5 years it is a well established pattern. Sometimes I just think it is all in my head and I am overreacting to anxiety but as Onandon03 said earlier if you have a diagnosis, best to go with it.
I am taking magnesium and B2 and will keep in mind the Propanolol, if I may ask what dose are you on?
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Regarding Propranolol dosage, I’m sure somebody on social media will tell you they took a few 10mg tablets and made a complete recovery! From my experience that wouldn’t be the Propranolol. That would have been a Latter Day Miracle. Propranolol takes ages to kick in for most people, and I think you will find the usual migraine dose of 80-160mg daily is needed, and most probably the top end of that, Just my experience. Read up on archive, KathyD, was on 240mg for four years to achieve success. Check it out. Helen
Your so right about looking down even looking down to put my slippers on the right feet send me in a spin!!! So…is it the head tilting that causes it…or is it our ears and eyes?? Or all of them???
Jo
If your brain is using your sight for balance because other parts are giving it conflicting gooboldigook it is working in relation to the current horizon they see. Looking down is tantamount to standing on your head. You’ve lost your ‘balancing’ horizon. Not my theory but a psychologist who gets MAV told me. Seemed feasible hyposthesis to me. Helen
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Yep I get that occasionally when closing eyes and attempting to turn in shower. Probably better off than most.
Hi there. It is horrible isn’t it. I am on a super low dose of Propranolol one 10mg a day after tea sometimes more depending. Helen is probably right that it probably doesn’t do anything! I can’t tolerate anymore and it might help with anxiety. Anymore makes me feel really lightheaded but everyone is different. My neck has worn discs so that makes me feel dizzy and looking down at times is difficult. I find it hard to focus but I am super shortsighted. I have a lot going on and have have had issues for years with dizziness. Are you in the UK and what tests have you had? R.
That is the most common sense explanation I have ever heard, I was convinced it was the crystals in my ears.