I am so glad I have found this site. I have recently been diagnosed with VM by a Neurologist here in Melbourne. I had been previously diagnosed in Scotland (around 5 years ago) with ‘Uncompensated Labyrinthitis’ and have always believed it was this I was suffering from. It has come as a bit of a shock to be told it is actually VM but I am beginning to agree the more I look into it. I have been doing some VRT through a wonderful clinic in Melbourne called Dizzy Day Clinics and I cannot speak highly enough of both Dr Kate Murray and my Physiotherapist Mandy Lenwood. If anyone reading this lives in Melbourne, Australia I would highly recommend them.
I have been taking 0.5mg of Sandomigran for only one week so far and I certainly notice a difference with my symptoms however I think I will need to double this in a weeks time as it’s just not helping enough for me to fully benefit and get back to work, as well as looking after my young children. Some days are an awful struggle and even although my husband is supportive, it is difficult for him to fully understand…
I have ordered a copy of the book How to Heal Your Headaches and cannot wait for it to arrive in the post.
It will be so good to be in touch with other people who understand what I’m going through. Looking well makes it very difficult for people to truly empathise with my experiences.
I hope I can be of some support to all of you too.
This is extremely valuable Information for me…I just had my first episode of spinning, loss of balance, pulsating on right side of head in a peaceful museum I work in.It was terrifying to say the least. Was driven to the ER and did all tests and there all day of which they said I was an “enigma.” At one point in my hospital terror; I saw a white light surrounded by grey and I was outside my body. I felt peaceful at that point. Then sent home and to ENT and had that awful test that made me spin on purpose to get clarity on vertigo, balance, and hearing…Then to an expert doc who specializes in this. I was diagnosed with “non-localized peripheral Vestibular Migraine Vertigo” I also have high-pitched hearing loss. I, too ,am a swimmer like discussed on this site and was told to do certain exercises at home and not to swim. I am hesitant to swim yet want to try it out-- but scared to. I came upon this website as if it was what I needed at this moment. Scott; I must tell you that I am put at ease from your knowledge and Grace with others on this site. Thanks is not enough when you are not alone in this. I will continue to read your helpful literature and try to survive and recognize triggers. My expert doc in this dept. has me keeping a diary and exercises aimed at what we have. I wish the best and healing for all of you…
Scott,
I am new here, and i wanted to say thank you for posting this. I am getting ready to order the 2 books you suggested and the part you wrote about the Chronic Migraine described me exactly, especially about always having some degree of headache and the floor moving. I have never been able to put it into words when talking to a doctor, but sometimes when I take a step it is like I am walking on a sponge. Whenever I’ve said that in the past, they look at me like I’ve just said a bunch of words out of order and backwards. LOL I always kinda felt like a freak by the time I left the office. :oops:
Just found this site not long ago. Thank you for the Survival Guide! I have two daughters who have been suffering from vertigo (most likely MAV) since they were 12-1/2 (they are 15 and 17-1/2). They have it 24/7, 365 days a year. A severe migraine (with vertigo as the aura) brought on the oldest daughter’s vertigo. The headache left, but the vertigo stayed. Most recently a mild cold sent the youngest into a very bad attack over Christmas and has been sitting on the couch for the last week. Both girls take meclizine to regulate it. We live in California and I was wondering if you knew of a doctor in the San Francisco Bay Area that understands MAV to the degree that you do. We’ve tried other neurologists, but most want to do tests that would increase their vertigo and I won’t do that to them. They also have other health issues that would fall in the autoimmune category. Any help you could give would be much appreciated.
Hello dizzy girls, I was diagnosed with Mav 1,5 year ago, at age 29. My dizziness stayed more than 6 months 7/24 all the time. It was horrible, so I can understand what your daughters feel. I live in Turkey and for 6 months I couldnt be diagnosed. After 6 months I was diagnosed with MAV started to take cipralex and propronalol every day. and have a special diet - no salt, no caffeine, no nuts, no yeast, no orange -lemon. It’s been 9 months since I started to take these medicines and diet. now I can say that my dizziness has göne %99. sometimes I dont feel it totally, %100. It comes back very easily if I have stress, menstruation period or cold, or eat a pizza it only comes back when you have cold or menst. period.
I hope they can get better soon.
Thanks for the encouragement! I’m glad to hear that you are improving. It gives me hope that maybe we will find the right medicine for her and she can enjoy life a little bit. I wrote my comment a week after Christmas and she still is not any better. Will have to find someone who specializes in the proper kind of medications for teenagers. Hormones are mostly playing a role in this. But, this was her first ear infection ever and I am still in shock that it’s made such an impact on her. Thanks for your help and be well!
Unbelievable!!
After a lengthy period of time without any idea what was wrong with me, I went to an ENT who diagnosed me with VM. I skimmed through the Survival Guide triggers section and it read like my life story. I actually thought I was going crazy! I have trouble walking hallways of any considerable length because of dizziness. Certain patterns in carpets, wallpapers, etc cause dizziness. It was embarrassing to even tell anyone what I was feeling. I was put on Topamax so hopefully things will eventually start returning to normal. Thanks for posting this Guide. I don’t feel as crazy anymore
Wow!! So helpful, thank you so much!
I have been suffering for 2 years now and been from doc to doc without any help. Just now found an ENT who has suggested MAV and reading this post well… it all makes sense!!
I’m new to this forum thing but there seem to be so much useful info and so many ppl with the same experiences. Looking forward to reading though it.
Scott, thank you so much for posting this. I was just diagnosed with chronic vestibular migraine after 4 months of episodic dizzy spells, followed by chronic dizziness for the past 10 weeks. After jumping from doctor to doctor with nothing conclusive, finally one neurologist said my history fit perfectly with a person who has vestibular migraines. Through a lot of research (including this post), I definitely fit the profile, especially since i have a history of “regular” migraines. For now I’m on 20 mg of nortriptyline, and am doing vestibular therapy along with a migraine diet. I’m really hoping these efforts help—I just want my life back. I’m tired of having to leave shopping malls, church, grocery stores etc on a regular basis because of this. I know it varies for everyone, but does anyone have a time line for all this?? I keep getting mixed messages from the different doctors involved…one says six weeks, another says it could be a couple months. I’m nervous about returning to university in the fall, as I can barely get through a stress free summer day. It’s so difficult to be patient…
You have just described the last 3 years of my life. Good to know I’m not just going crazy. Bizarrely my attacks appear to occur in September/October time. Nothing last year but back with a vengeance this year. Currently off week this past week, back to the GP today. Anyone have any tips? Taking amitriptylyne, magnesium supplements and changing my diet.
Thankful for any help and advice.
This is such an important article. In the old forum it was pinned. I propose pinning it to the top here in the Discourse forum as well.
Thank you for all your hard work getting things moved over to this new platform. It is a huge improvement and a great benefit to the community that the history and user accounts remain usable.
This posting sums up EVERYTHING THERE IS TO KNOW about vertiginous and other weird migraines…I wish our medical profession knew more about this b/c the world’s best ENTs and neurologists in Houston, TX didn’t have a clue…I came cross the Heal Your Headache a 1-2-3 Plan book and it saved my life (literally).
this post should be on the HOME PAGE of this forum…seriously, please highlight it in someway…if this forum is about helping people, its clear that people who come to this site need to read it and may not make it through the many, many pages to find it
Scott, I’ve just read this and cried it’s so me I can’t believe . I think this all started when I was about 14, I’m 64 now. I can’t believe my life has been so dominated by this and until last year no one mentioned this VM to me. I will change my diet and will seek some medication and physiotherapy. Thank you for all this information . Keep up your good work .
This is a great review of the problem. Your summary is excellent and your links are very helpful. I finally found relief, after a 3 year search and a debilitated life, when I hooked up with a physician who followed the information from Johns Hopkins, the basis of “Heal Your Headache 1-2-3”. I have so much to share, including non-trigger finds at the market and my doctor’s name for anyone in the area, that I have written a small blog (no ads or gimmicks) that I will update weekly. I have included mvertigo.org in my Resources because it has been so helpful. Thanks for all you do for the community.
(www.vertigotalesandtastes.blogspot.com)
This is a wonderful review and full of excellent reminders. There is so much to remember that we always need to be reminded of all the details. Thanks for organizing this great, large community. (www.vertigotalesandtastes.blogspot.com
Thank you so much for this article and also for this website.
I have had VM for four years now and have only been correctly diagnosed for a few months, in this time I have lost the job I love in palliative care through absences from work. I was beginning to honestly think my life was not worth living and no one seemed to understand how horrible the symptoms can be. I never associated VM with my hearing loss, vertigo and terrible nausea.
However since seeing a lovely ENT specialist, I have been correctly diagnosed. I had kept a diary of my symptoms and so he could see that they came in clusters. He asked me to take all the trigger foods out of my diet and introduce one each week, well, I did really well for a couple of weeks and then tried to introduce chocolate back, the effect was immediate and I woke up the next day with the horrible symptoms back again!!! which have lasted nearly a week now in one form or another, after the initial vertigo and nausea,’ jelly’ legs, joint pains and a overwhelming fatigue.
However, after finding this website and especially this article, I have realised that if I eat a healthy diet and miss out the trigger foods, cut down on stress, then I can get my life back on track, I have read this article many times since I first discovered it and I must say that I am so grateful to you, it has been a real lifeline for me and when I do get discouraged I read it again !
I am determined to use the knowledge in this article to get better.
Thank you so much.
Debbie x
Thanks for sharing this survival guide. As you stated there is a lot of misinformation on the Internet on this subject. I have bookmarked this page and will refer to it regularly to help with treating myself.
I haven’t posted on here in a couple years because I was feeling “OK”. But now I’m getting worse again. I’m not really following the diet and have been of Verapamil for a few years. I am going to attempt the diet modification and I was wondering if Almond milk is considered acceptable? If we are not supposed to consume nuts then maybe this is a bad idea? It’s something that I have been using almost daily.
it only comes back when you have cold or menst. period.