I’m new here and have been given a diagnosis of MAV. I’ve had a constant vertigo sensation for five months an have all the tests that everyone else on the board has had. I literally woke up one morning with this and it’s never gone away since. I had several other diagnoses that were wrong before my doctor said MAV. So far, it’s the only thing that closely fits, but I’m still not sure that this is what I’m dealing with. I’ve had few migraines in my life, maybe a total of three. I’ve always had trouble with motion sickness though. My vertigo sensation almost totally goes away when I’m moving, like in a car.
My question is this - my vertigo sensation feels different from what I’ve read from others. It’s not lightheaded and I never feel like I’m going to faint. I feel like I am moving all the time. Sometimes it’s spinning, sometimes rocking, sometimes I feel like I am being gently pushed on the back of my neck. It’s contsant but varies to different degrees depending on the day. The weird part is that it’s rhythmic. It sometimes feels like it’s in sync with my heartbeat. I’'ve had a heart workup done and all checked out OK. When I ask doctors about this, they always tell me it’s all in my imagination and I need to relax. I’m just scared and not sure what to do next or who to ask for help.
Does anyone else feel like this? I’ve never posted before and I don’t know anyone else who has this. Just feeling kind of alone.
Hello operagirl. Welcome! I too woke many years ago with out of the blue vertigo, never having had it before. Most of your symptoms will sound very falmiliar to those of us on this board. MAV tends to vary so much between individuals and I’ve come across so many varied types of dizziness associated with it that nothing would surprise me any more. Personally I’ve never heard of rythmic vertigo as you describe but my guess is that someone on here will have done and will be along to reassure you that it’s all part of the wonderful MAV spectrum! And no need to feel alone anymore. We all understand the emotions that accompany this condition and are here when you have questions or worries.
Sorry I can’t be more helpful with your main query but just wanted to say hello anyway.
I have UVL. In addition to this, I have MAV. I know my MAV is responsible for my dizziness if A) it gets worse around fluorescent lighting or bright lights, B) I can HEAR fluorescnet lighting and C) noise makes my head buzz and/or D) lights and sound have the potential to churn my stomach contents.
I don’t associate all-out spinning to my MAV - but that’s purely based on my own experience. I’m blaming my inner ear for that one.
Before the meds and after my attack, my symptoms were constant though some days were definitely worse than others.
Past four days have me dealing with clear mini-attacks. I’m thinking migraines. That…and the lights are making me nauseous right now as we speak.
HI Operagirl,
Welcome to the forum. Your symptoms definitely sound like they could be MAV related for sure. I am sorry you had such a poor response from your doctors so far. The best advice would be to find a neurologist or neuro-otologist that specializes in MAV (or at least migraines or dizziness). If you tell us where you live, or basic area, maybe someone on the board can recommend a specialist you can see that can better direct you in treating your condition.
There is help out there and unfortunately many doctors don’t know about MAV and dismiss our symptoms.
Operagirl you are not alone. I too woke up oneday out of the blue spinning and been exactly the same since 24/7. All the symptoms and sensations you describe I too experience. I have probably ony ever had 2-3 migraines in all of my 29 years just like you. Funny how you mentioned a moving car. That is the only place in two and half years I also feel somewhat normal. All of my tests have comeback healthy and fine but I am still living with whatever it is.
I have been told it may well be MAV and your symptoms sound exactly the same. Keep searching and keep strong.
Operagrl - I can also relate to what you wrote. My symptoms also came out of the blue. I do have a history of typical migraines, but was never dizzy a day in my life before this occurred. Additionally, I and many others on this site experience some relief in a car. I hope you get some answers and relief soon. keep us posted.
Lisa
My symptoms are similar to yours, except the heartbeat part. I only a 2-3 times experienced mild spinning (real vertigo). Much more, I felt/feel like I’m leaning, rocking or being pushed gently. Like yours, it was also pretty much constant, but varied in severity. But, it just never synched up w/ my heartbeat. Only a few times have I felt light-headed, but it has happened and may have been caused by something else. I now get breaks from it, unlike the first several months.
I, too, have a history of being motion intolerant since childhood, and this has even lowered my threshold. Now I get motion sick very easily; when I’m very symptomatic, visual stimulation – people walking in the mall, cars going by, TV – will quickly make me worse. I have a family history of migraines, but for the first several months, I had no headaches, nor a history of migraine. Now, I do.
I very much doubt it is in your head. My GP acts a bit like that, but my neurologist is completely different, admitting that our current level of technology and knowledge is such that the symptoms are real, but we can’t yet identify the cause.
I guess you’ve had your inner ears tested. I know that superior canal dehiscence can cause one to be chronically off-balance and also hear internal sounds like eyes moving or heartbeats very distinctly.
Following a strict migraine diet, getting to bed and rising at nearly the same time and avoiding stress when possible, all coincided with a reduction in my symptoms (after about 2-3 months).
(By the way, I’m currently listening to La Traviata.)
Thanks for the welcome everyone - I can’t tell you how much your encouraging responses mean. In response to where I am, I am living in Denver, Colorado and would be grateful if anyone knows of a doctor in my area who specializes in MAV. I’ve seen 9 doctors from general PC to ENT and no help so far.
I have the exact same symptoms as you!..a constant motion feeling that seems to go along with my heartbeat sometimes. I too only feel normal when I’m moving like in the car. No doctor can figure out what it is except maybe MAV. This is my second time dealing with this and I have looked for alternative solutions. I am getting some relief from a NUCCA chiropractor. I see you say you are in Colorado, here is a link to a good chiropractor that has done research on dizziness related to a neck injury: erinelster.com/ I never had neck pain or anything but when I went to the chiropractor and they took x-rays they saw that the top 2 bones in my spine, atlas and C2 were significantly out of alignment. Please check it out. You really have nothing to lose, the treatment is painless and gentle, you don’t even feel it. Let me know if you decide to try it. It has helped me so far when nothing else did.
My question is this - my vertigo sensation feels different from what I’ve read from others. It’s not lightheaded and I never feel like I’m going to faint. I feel like I am moving all the time. Sometimes it’s spinning, sometimes rocking, sometimes I feel like I am being gently pushed on the back of my neck. It’s contsant but varies to different degrees depending on the day. The weird part is that it’s rhythmic. It sometimes feels like it’s in sync with my heartbeat. I’'ve had a heart workup done and all checked out OK. When I ask doctors about this, they always tell me it’s all in my imagination and I need to relax. I’m just scared and not sure what to do next or who to ask for help.
— End quote
What you describe here is real close how I feel when I am dizzy. It’s a constant motion feeling, which direction I can’t tell. I use light headedness to describe it because it is the only thing the docs seem to understand. Never experienced spinning, sometimes it is rocking, sometimes it falling but most of the time it is just a constant motion feeling. I have had the shove sensations as well, I can’t say a gentle push, because that invisible hand that is shoving just pushed me out of the line I was standing in. I have never experienced a synchronization with my heartbeat, but that is understandable since migraines are based off of blood flow. I can’t word the logic thanks to brain fog, but I think you get the jist.
Forgot to mention that I also feel better when driving, so long as the traffic is flowing.
I’ve been to a GP, an ENT, audiologists and a neurologist. I think this is common for people on this forum – to see several Dr’s.
I don’t know of Dr’s in your area, but you should definitely be seeing a neurologist or neurotologist. The ENT should be one who specializes in “dizzy” patients. At least he should have you do a VEMP, ENG and hearing tests. The hot/cold water portion of the ENG made me dizzier than I ever thought I could be, but it subsided in 2-3 minutes. I feel very sorry if people here suffer that level of vertigo on a regular basis.
I have the exact same symptoms as you!..a constant motion feeling that seems to go along with my heartbeat sometimes. I too only feel normal when I’m moving like in the car. No doctor can figure out what it is except maybe MAV. This is my second time dealing with this and I have looked for alternative solutions. I am getting some relief from a NUCCA chiropractor. I see you say you are in Colorado, here is a link to a good chiropractor that has done research on dizziness related to a neck injury: erinelster.com/ I never had neck pain or anything but when I went to the chiropractor and they took x-rays they saw that the top 2 bones in my spine, atlas and C2 were significantly out of alignment. Please check it out. You really have nothing to lose, the treatment is painless and gentle, you don’t even feel it. Let me know if you decide to try it. It has helped me so far when nothing else did.
Lizzy B
— End quote
Lizzy can you explain what type of help you are receiving. Chiropractic is the one thing that I have not done. Since not one of the meds has helped me, there must be another way.
Thank you kindly,
Sally
The treatment I am receiving is upper cervical chiropractic. They perform a gentle adjustment behind your ear that you barely feel. You have to make sure it is a NUCCA doctor because I have tried other types of chiropractors and they have not helped. What kind of medications have you tried??
Thank you. There do not seem to be any NUCCA chiropractors near me but I live in a rural area.
I have tried:
Klonopin, Ativan, Valium
Topamax
Ami, and Nortrip
Verapamil
Celex, Prozac, Wellbutrin, Lexapro
Neurontin
And others I forgot. Unfortunately, I have a very difficult time. Only Ativan gave me occasional relief but tolerance built up quickly. And yes, I did try to get to theraputic doses but get to the point of being totally incapacitaed when I do. Wish I could try Nori again.
I can certainly relate to your symptoms. My condition also started with out of the out of the blue Vertigo…i woke up one night in the wee hours of the morning. I had approx 6 more of these episodes over a 3 year period and the last one brought on the chronic rocking motion. Every time i had these night time vertigo episodes i would also experience severe vomiting. Also, i have never out grown motion sickness…like yourself. Curvey roads in mountians, certain carnival rides and boat rides are very difficult to deal with. Also…i have a constant Squeezed Tension like feeling in the right side of my head and if i listen carefully i can feel a Pulting like feeling on the right side. I take one pill of anti-anxiety medication to help calm down the motion and tension. Also take one tab of Verapamil.
What makes my condition worse is…LACK OF SLEEP, MSG, ALCOHOL, CHOCOLATE & CAFFEINE + STRESS. But Lack of sleep is the worst!!! On my worst days i feel like i’m Deep Sea Fishing. It’s down right awful! The positive part is i have made a fair amount of progress over the years but i’m still far from 100 percent. I would say i’m around 60 percent. I can only work part-time…and have to keep my life very simple…little or no surprises. Feel like a very fragile individual.
operagirl: i know it’s discouraging when doctors tell you “it’s all in your head” or “anxiety”. don’t give up. find a headache specialist. they are much better equipped and don’t make you feel like you’re crazy.
i am on nortriptyline 10 mg, try to sleep enough, and so far i am ok, have a 5 mo old son, still work full time. i have good days and bad days with feelings of floor bouncing and moving, feeling of swaying, etc. no rotational vertigo since my one and only episode at onset of labor with my son.
your symptoms do sound very familiar.
Thanks everyone for making me feel for the first time in 5 months that I am not loosing my mind! I’m still spinning 24/7, but I “Feel Better” just knowing that there are other people out there who understand.
Today we have a storm so I’m feeling a bit worse - I guess that’s part of this? I have stared taking 10mg of amitriptyline, no effect yet but I sleep better. I am also seeing an acpuncturist to see if that won’t help. I know it might be a long shot.
Lizzy B - Thanks for the idea about UCCA, I will check it out and see what this doctor has to say.
Wave - I love that you were listening to Traviata, my company did a production a few years ago and it was beautiful.
I guess the part that has me still feeling scared is that my spinning/rocking feels like it’s synced with my heartbeat. I’ve had two EKGs, worn a 24-hour holter monitor and had a echo-cardiogram done and all was normal (as was all my hearing, caloric, MRI, EEG, etc. tests). The comment about the blood flow makes sense though. Trying to hold down a full time job at the same time isn’t easy, but I try to look at the positives and keep going.
Thanks again everyone for all your encouragement and feedback - it has helped more than you know.
Wow Lizzy, two hours each way, that would set me back right there. I guess in two hours I could be in Albany. I didn’t even think about traveling that long to see someone. Does the travel make you worse after?? More rocking, etc.
Hey Sally,
The traveling does make me feel worse for a few minutes after I get out of the car (more intense rocking ). You probably feel that way too. Good news is I don’t feel the rocking in the car… : ) But after I get my adjustment I always feel better. You live in NY? I grew up near NYC. There is a really good NUCCA doctor in Rochester and someone in Buffalo. There is also somebody in the NYC area but I tried him and didn’t like him that much but many people have had a lot of success with him. How far away are you from any of those places? Those are the only ones I know in NY. Something else I forgot to mention…what you said about the blood flow and how the motion feels like it goes along with your heartbeat…after I get my atlas adjusted I immediately feel this incredible heat on the left side of my neck. The doctor explained that the heat is the feeling of the blood flow returning to the area where it wasn’t getting as much before.
My best guess is that maybe my dizziness pulsing feeling is caused by a LACK of blood flow to some nerves that is causing some inflammation (hence, the pulsing feeling along with your heartbeat). I only say inflammation because the only other thing that calms down the dizziness for me is taking a big dose of prednisone, which treats inflammation. Have you tried that yet. Problem is you can’t take that forever and it has nasty side effects.
