At my appointment with my first oto-neurologist I was told that the reason why so many of us are mis-diagnosed, not believed and considered to be suffering from anxiety is because VM has only been in the neurologists book of accepted diagnoses for a year. Prior to that it was accepted by some neurologists but dismissed by many others. The neurologists who understood the disease and treated many patients had to apparently fight very hard to get the diagnosis accepted and placed in their go to diagnostic book. I hope this helps those people who are struggling to get the correct diagnosis. It has certainly helped me to understand why I have had to wait for more than eleven years to receive help.
Cynics might call it flavour of the year. Or decade. ENT medicine seems to suffer from fashions because diagnosis is so tricky due to the limitations of scanning etc.
I’ve said this before but whatever you think of the underlying reason for these symptoms (and in my case I’m more convinced by the ‘secondary hydrops’ explanation) at least symptom management is usually effective for most.
I’m with James…I don’t care what you call it - it’s all about symptom management for me!!! But this does explain why there seem to be ‘so many’ people with MAV out there right now. Certainly I think this forum gives a wonderful overview of possible treatments.
Glad you are continuing to improve, James, and also that you are finding the help you need, Margaret. I know all about being fobbed off as ‘neurotic’ - even if it was’nt put quite that way!
Thank you for your replies. My point was that if VM wasn’t a recognised disease then the doctor’s would dismiss it as anxiety. Now it is a recognised disease they have information and guidelines to follow. Hope that makes sense!
I totally get your point, Margaret! I suffered ‘dizzy spells’ from the age of about 20 …I’m now 68. Back then, I was fobbed off with nasal congestion, ‘woman things’, etc for 10 years before I hit on an ENT who diagnosed Meniere’s. When I asked how come no-one else has been able diagnose, the reply was that little was known about it by GP’s!!! Seems the ‘ignorance’ has just moved up a few specialties since then. So grateful for the internet!
Yes sure Margaret. The more doctors are aware of how to treat this constellation of symptoms the less suffering there will be.
You sound as if you and I have trodden the same path as I have finally received help aged 67!!! Where do you live? I am in Suffolk, UK. Hope you don’t mind me asking, I am curious to know how widespread the problem of being diagnosed is.
My dad has a friend who is from Norway and she was the only person in the country diagnosed with it. She had it for a year. She said shs woke up one day with it, then woke up a year later and it was gone. How crazy!
That’s interesting… my symptoms started literally overnight. Went to bed normal one day, woke up feeling completely different the next morning
I was initially diagnosed 18 years ago with MAV in 1999 at Johns Hopkins here in the States. I consulted with a Dr. David Zee, a brilliant neurologist.
The diagnoses at that time was not in vogue with most neurologists and otoneurologists. I questioned this “migraineous vertigo” . So, it’s interesting that your neuro stated it’s within the past year that MAV is now recognized. It’s been recognized for years within vestibular research labs.
I’ve posted before that I have been suffering for 40 years with this dizzy beast. 40 years ago I was told I was an anxiety ridden teenager looking for attention. It was a nightmare. My grades in school suffered terribly as I developed cognitive issues. No one mentioned migraine, even though I suffered greatly as did my Father with painful migraines.
I believe it us a continuum. Migraine damages inner ear over time, causes hydrops in some, like myself as well as hearing loss and tinnitus. I think that MAV is over diagnosed in some. I also think Menieres is also overdiagnosed .There are still physicians who refuse to give a MAV diagnoses as they believe it does not exist and those who overdiagnose MAV.
Very difficult for those patients who suffer and do not get the correct treatment…
I wish that would happen to me.
What meds or supplements are you on now NYGAL? Have they made you fully functional? I’d love to compare notes. I’m very functional now but some days are harder than others… mostly stress is my trigger. xx
Hello Margaret, I am in South Africa. Certainly back in the 60’s & 70’s we were not up to ‘international’ standards, although my ENT at the time had been to America to further his knowledge about Meniere’s.?? Until relatively recently, I very seldom heard of anyone with similar problems. Plenty of folk with (regular?) migraine, and it has been suggested to me by migraine sufferers that that was my problem.
Perhaps it’s my age now, but it seems everyone has had or knows someone with ‘dizzy’ problems, but most seem to be cleared up quite quickly, I’m guessing blood pressure, low sugar or similar problems. I have also heard of several claiming a cure from the local ENT who does the Epley maneuver, but he did nothing for me, except lighten my purse.
During those first 10 years of being blown off as basically neurotic (my all time favorite diagnosis being - “have a baby and you won’t have time for dizzy spells”), I had truly got to where I thought maybe I was actually bringing these on myself, and was therefore a bit mentally deranged!! Once I was diagnosed with Meniere’s and had a reason, though no cure or real help, I just learned to live with it. Then suddenly during last year, following a ‘normal’ break after 4 months of hectic Meniere’s episodes, these new symptoms appeared, which totally match so much described here, though thankfully not as bad as some!! My GP felt it was’nt migraine related, so I just left it at that and experimented with supplements etc. on my own. I am a little skeptical of the medical profession in general these days! At present, I am almost 100%, - suspect it is just a remission, but keeping up with the supplements and hoping or the best!
I do remember reading somewhere that there were more REPORTED cases of MAV in Britain than elsewhere, but it was posseted that this was possibly a diagnostic glitch.
That is exactly why I posted my message so that people in the UK at least know that VM/MAV is now a recognised/certified disease so that they know they can push to see an oto-neurologist who will know where to look for diagnostic criteria and treatment options. I hope this knowledge will soon be worldwide so that all the needless suffering that has been going on through ignorance will stop.
I am on 25mg if Nortryptiline, 300mg of neurontin and 10mg of torsemide. I was diagnosed both MAV and hydrops. Though second opinions have disputed the hydrops diagnoses. This trio controlled me quite nicely after an exacerbation this past August. The past 5 days have been rough for some reason. I attribute this setback to a very bad diet this past month. Way too much chocolate and sugar . I became too comfortable and thought the drug regimen would negate any of the chocolate “cheating” . I was wrong. Back to a strict regimen and hopefully will get me back to baseline.
I can’t take magnesium, gives me awful stomach issues Which is highly recommended for migraine. I am functional compared to others but I don’t like this "lightheaded/heavyheaded feeling. I’m almost tempted to throw a meclazine or bonine the mix to see if it takes the edge off. How About you ? Stress seems to be a factor for you? I’m not sure I’m affected by stress, although I suppose underlying stress can be sneaky!
Hi NYGAL! neurontin helped me too- Gabapentin. But I’m trying to find a supplement regime that works well since I’m hoping to have kids soon so that’s why I stopped it. I am good on 600mg of magnesium a day (800mg is when the GI symptoms seem to kick in for me) and 300mg of CoQ10. I’ve been using the Trader Joe’s brand which is slightly less expensive than others at Whole Foods. St Johns wort helps to some degree as does feverfew but today I’m just on magnesium and CoQ10 and feel find under fluorescents for the most part. One thing that I think did help a lot is starting to eat meat again. I used to be a vegetarian and wonder if part of this was cause by B12 deficiency or Vitamin D deficiency. No idea! I am really glad to hear that you’ve got your symptoms controlled! Stress and too much caffeine are my biggest triggers. I’ve got to learn how to meditate I think xx
Hi. I also was looking for answers for years. It must have been 20 years that I was told it was an inner ear problem. but my episodes got worse and worse, longer and longer.
A couple of the last times I thought I was having a stroke and needed a hospital. but of course the thought of being driven to the hospital which is a half hour away was horrible, since I would be spinning and possibly heaving all the way there.
I decided to pursue the problem relentlessly until I could find something to do about it.
Went to Froedtert Hospital which is Medical College of Wisconsin and underwent a series of ear and hearing testing. One of the things I had been hearing was the possibility of Miniere’s Disease.
The tests were kind of bad since they make you dizzy to see if they can figure out what it is that makes you dizzy.
After several days they had me come back for results and the ear people told me that it was not Miniere’s. The woman I spoke to said she felt strongly that it was vestibular migraine. But she also said that many physicians did not believe in that diagnosis and that my next step should be a neurologist.
The neurologist talked to me for about 10 minutes and suggested that I needed bio feedback training.
Around that time I was going to see some people about a glass project… my husband and I are glass artists.
I knew that the husband of the woman I was seeing was a neurologist. And I asked him if he thought I could possibly have vestibular migraine.
He said he was extremely interested in that and I should come to his office.
We talked for quite a while and he told me there might be a medication I could try and the next time I had an episode I should call his office. and he would prescribe it.
I did and he prescribed sumatriptan.
After a couple of hours the spinning stopped and I was tired but fine.
I have had three episodes in the past year, used sumatriptan each time and each time it worked for me.
I believe the trigger is stress and now I am working on that problem.
but anyhow, the sumatriptan has been a life saver for me.
That is good to hear that you have a rescue med that works for you. Hopefully many more people will be seen by neurologists who understand the disease in the future. We are all different in how it affects us but there are symptoms that are common to all of us so we just need neurologists who can think rather than just dismiss our symptoms as stress.
I am glad to hear that the diagnosis is official now. My doctor is an oto-neurologist at the University of California Irvine Medical Center and he has followed the research completed at Johns-Hopkins for many years. I was lucky to finally (after several year ) find him. He was adamant that I had “Silent” migraine and that I needed to follow the protocol of: diet, trigger reduction and if needed, medication. Through trial and error, I have also found that histamine foods are a trigger for me. It makes a difference if I significantly reduce tomatoes, potatoes, eggs, berries and other histamine foods. I only recently figured this out. I seem to be under control but it does take a lot of work if you want to be off medication. Keeping a food journal is essential. It is reassuring to know that the medication is there when I need it. Hope you continue to do well. I do not think I will ever be carefree. And I can never have coffee, alcohol or more than small portions/tastes of many other foods. But it is wonderful to have the vertigo under control. Good luck. (vertigotalesandtastes.blogspot.com)
I am the same with tomatoes, potatoes, aubergines, sugar, caffeine and alcohol, all on the no list for me. Even though I am really careful I am not out of the woods yet and need nortriptyline as well as something to make my stomach work as VM has also given me gastric stasis. I am just so glad that neurologists now have a diagnostic and treatment tool so that more people will be helped more quickly. I have a feeling that neurologists who qualified a while ago may not be as clued up as the recently qualified ones so I would think if you have a choice go for the newer model!!!