Constant MAV

Can anyone who has constant dizziness symptoms with MAV please describe them? Is it 24/7 or do you have “attacks” of MAV after certain triggers. Anything you can tell me about dizziness associated with MAV would be great. I really need to find a diagnosis

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Hi Coug…i have thought of this question many times before. I have motion 24/7 and without medication, watching my stress and diet… it would be worse with Vertigo episodes and at the worst feeling like i’m Deep Sea Fishing. We all know this is not just a headache issue but also the vestibular system is malfunctiong…or atleast this is what i believe. So if our inner-ear has some slight damage then i’m wondering if this is why we are always feeling motion and our equilibrium is off?? I don’t believe i’m having a Headache 24/7. But i do believe if the MAV symptoms increase to an uncomfortable level then it’s probably headache related. But a run of the mill day with some motion/dizzyness…then i believe this is the inner-ear not functioning properly.

This is only my thought. Would love to hear what other people think on this topic.

JOe

Click on the “MAV FAQ’s - answered by neurologists/ENT’s” section -

There’s a series of questions answered by Dr Rauch, then Dr Hain, then Dr Rauch answers a question about chronic MAV dizziness. It’s very informative!

Coug, my so called “MAV” comes in two forms -

  1. severe incapacitaing eposodic vertigo which has me unable to move for 4ish hours (until the valium finally starts to work). Fortunatley this doesn’t happen too often. I’ve gone from 3 weeks to 1 year between attacks over the last 2 and a half years. No known triggers for this.

  2. constant feeling of motion sickness, always there, all day long, no food triggers that I can pinpoint but many others such as lights, odors, movements of other people or things, watching things move on the computer screen, rocking chairs, sunlight flickering through trees as I drive by, my wobbly chair at work, pictures that are hanging crooked on the wall or just plain old breathing. Too many things to mention. A feeling that I am about to tip over, feeling like I want to hold on to walls as I walk, a constant fear that I will have a vertigo attack.

I talked to my doctor about these two asking him if they are related. He said after a vertigo attack it takes months to years for the body to heal from this and that is why I continue to feel the way I do (but I felt this way before the vertigo even started!). My ENG showed no inner ear damage, at least the part of the inner ear that is tested. From what I understand it only tests a certain part. I’ve asked for a copy of the report to be sent to me so I can see for sure what it says.

I have been dizzy 24/7 for 2 1/2 years. my dizziness is largely in the form of disequilbrium - feel like I’m on a boat when walking. I also have constant spinning in my head, not actual spinning of the room, but more of an internal sensation of spinning.

I wasn’t aquianted with that feeling before a couple of weeks ago lisa; it’s no fun at all.

for me symptoms are generally constant and usually I don’t have sudden attacks either, if things get worse they tend to progress. Howeer I recently had a surge in symptoms that literally came on overnight, for which i have little explanation. I am on a migraine-diet now + made some other changes in my life including regular (and proper) sleep-patterns, and I’m feeling better though still not entirely back to “base”.

I have not been diagnosied with mav and don’t have that many headaches anymore, altough I did at first. My symptoms are constant phantom-motion (never rotational) that generally is relieved when travelling in a car, watching tv etc. The new symptoms I got lately were serious motion and/or noiseinduced dizzies, like my head was a big sponge that absorbed all that stuff so it echoed around in my head sorta, and I also had a lot of ear fullness which I popped my ears constantly because of.

Hi Mike,
This is one big nightmare for us all…we are all different but my dizziness came and went, gradually at first ,then some days really bad , some days fine. Came and went very suddenly and clearly from one day to the next.I also had ear popping fullness like they were constantly blocked but never a headache.
Then it got locked in and became constant and severe for 5 months.
I then got diagnosed with MAV when I found the right doctor through this site. Since doing the diet and meds I have been gradually better. some days normal , some days slightly dizzy. It is like I can feel it slightly under the surface waiting to pop up, my body is still not clear or over it.
I hope you find the right course of action. The people on this site are amazing and still help me through this maze .
Best of luck.
Penny

Hi,
I have just got back from seeing Dr. Rauch, and he has said that I may have MAV. I have found it very hard to describe what I am feeling. Then when I read what someone else says, I yell at the computer
“YES that is what I am feeling” !! I feel like inside my head is spinning, when I turn corners I hit the door frame, and the pressure in my ears are ridiculous! Sometimes when I turn my head slightly, and turn my head back it feels like my head cannot keep up with the turn. I don’t feel nausea, and I don’t have pain. I am still nervous about what I have, and if it is MAV , but I am starting to see the light

Karlie

HI Karlie,

Did Dr. Rauch prescribe a treatment plan? Any meds?
Sounds like you are in good hands.

All the best,
Lisa

Hi Coug,

I am in a constant state of some sort of dysequilibrium, however, it waxes and wanes over the months and years to be being nearly undetectable to being very nasty. Even when “undetectable” probably because my brain has habituated to not pay attention, I can never hold objects totally still in my visual field. This I notice most when looking at small distant objects. The nasty periods occur when I am 1) low on an effective medication and 2) trigger this monster through various means such as sudden physical exertion, sleep disruption, stress, and occasionally foods. The latter usually produces neck and/or head pain and body aches and pains.

Scott

Hi Lisa,

Dr. Rauch has said that I should try the migraine diet. I don’t want to go on meds, so the diet will be my plan for now. I am still trying to figure out if this is what I have. I have read a lot of blogs and I can relate to most symptoms. It is hard to explain what is happening; sometimes I think I am nuts or making it up. But now I know I am not. It’s nice to know other people are dizzy too and feel like me!

Coug,
I also have what I consider constant MAV. I went back to another ENT last week and had another hearing test. He said I possibly have Menieres, MAV and Orthostatic Hypotension. I don’t think they are ever entirely 100% sure. Anyway I am dizzy daily. It is like I just spun myself around repeatedly or had too much to drink. I also feel like there is cotton in my ears constantly. If I go into a Department store it is brutal. The flourescent lighting and floor patterns mess me up. If I go to a stadium and the floors vibrate I have to brace myself. I had a vertigo attack in 2006 and was fine for almost 2 years after that. However, in 2008 I woke up dizzy and have been so ever since. I have had all the tests you can imagine and have tried supplements and diet. That has helped a little, but I sill remain dizzy. The ENT I saw last week has me dieting again and trying aleve when I feel a dizzy spell coming. I will try that for a month and if I see no improvement I guess I will have to go to the next step. I have learned a lot on this site!
Good luck,
laser

Hi

I have been dizzy (disorientated Is the word prefer) 24/7 for a little over 2 1/2 years now. I can really relate to MAVlisa as dizziness is largely in the form of disequilbrium , I to feel like I’m on a boat when walking and have constant whirling pressure in my head. Also a detached dream like feeling.The enviroment appeares to be constantly moving and shifting (not spinning) and can really jerk when walking or turning. It feels like my eyes do not work with my brain. Moving objects be it cars,tv screen,people walking by appear to blur and make me feel like I am falling. I had three spinning vertigo attacks upon waking in the first two weeks of this thing (none since,fingers crossed) that seems to have left me like this. I have had many vestibular tests including MRI with everything coming back normal. I still have no solid diagnoses and still no medication offered to me. I am due to see a neurotologic skull surgeon in two weeks and hope and pray he can give me some solid answers and some treatment.

So I had my surgery to remove the cyst and I had horrible spinning vertigo for 3 days straight with double vision and blurry everytime I opened my eyes. I was way dizzier after the operation, which makes sense because they were kicking up dust and messing with my vestibular nerve. The cyst and stretched the nerve up and over. The dizziness I had before the opeation is still there which kind of scares me but it has only been a week. I can’t expect results that fast. My nerve is in a new place and it needs to compensate for the change.

Do you guys who have MAV feel dizzy when you are lying in bed everynight? Do you actually see the walls moving around?

I hope you begin to feel better soon. In response to your question. YES. I feel like I am rocking(bed is shifting) when I go to sleep and have to sleep upright.This feeling was a little worse for the first two years and has gotten a little less extreme but still present everynight. Sometimes I wake up on my side and feel like I am falling up and down through the pillow and YES the walls look like they move. Actually I will just say the whole enviroment shifts,sways,bobs whatever you call it. Especially worse in the dark but ever present in daylight for me unfortunatly.

Hmm ok…because when i close my eyes, my head sort of spins. I actually see the room turning like true vertigo, not really bouncing as you describe. I dont really understand how a migraine can cause constant symptoms, seems like they might always be there but would wax and wane in intensity.

I have just weaned myself off of all medications for MAV, and the 24/7 has returned. On a scale of 0 to 10, 0 being what normal people feel, a 10 being a full blown vertigo attack, and a nine being a drunken bedspin, I spend my day on this scale varying from 1 to 5. Then I get attacks which will take me up on that same scale to between 5 and 8. For me, the constant dizziness is a constant sensation of motion, that can vary from a never ending fall, to feeling like I am floating away. Then you have to remember the room rocking back and forth, or just flat out leaning to one side. At a level of three or above, I start having problems with my eyes, starting with having to conciously focus to get my eyes to lock on something. At higher levels of dizziness, the nystagmus starts up, and if I relax my eyes, they will start bouncing back and forth. When I get to a dizziness level of 8 I can’t look at things while walking period as my eyes go into full flutter mode, twitching back and forth and I am unable to get them to lock in on any one thing. On my more acute attacks, my hearing also goes a little wonkers, and everything sounds like I am in a muffled echo chamber. I would say that my more acute attacks are minor meniere’s attacks, except that I have never experienced rotational vertigo.

coug,

The current ‘theory’ on the constant dizziness affiliated with MAV is a phenomena called constant migraine aura.

Hi Brian–

Could you maybe tell me if your symptoms wax and wane with you migraines? Does someone who has symptoms that remain pretty constant in severity and never wax/wane still perhaps have mav? Do you always have the rocking feeling? Its hard to find something to hold onto because it would seem that someone with ‘constant migraine aura’ would have times that it is worse and/or better. I can relate to that constant sense of motion within my body/head but I’ve read people who have Meniere’s/Labs that have the exact same thing. What’s your story in terms of the rocking? Do you have dizzy free periods and then an attack? How can you diagnose someone with MAV?

I also have MAV like symptoms 24/7 but with a small amount of medication it helps to decrease it. I just can’t believe i’m having a headache related problem all day long…i wonder if infact some damage has been done too the inner-ear due to the MAV? When your having a really bad day that might possibly be a migraine going on but just your run of the mill motion 24/7…i think it’s the inner-ear malfunctioning. Or it may have something to do with lack of Serotonin?? These are only guesses.

Joe