Iāve been doing fairly well lately, without the symptoms like constant rocking I had a few years back. Just the occasional day feeling a bit off balance, and I donāt tolerate things that challenge my balance very well, such as anything that causes travel sickness, and walking in dim light or on uneven ground. But really I had pretty much got back to normal in that Iāve been able to carry on with day to day life without many problems.
Iāve had a few dips, but theyāve been short-lived luckily. Iāve also had a few bouts of BPPV over the years. However, as I also get positional vertigo from MAV I find it really hard to tell them apart. Also my migraines headaches have been really bad the last few weeks.
For the last few days I have been getting vertigo on turning over in bed, and lying down/getting up. I was hoping itās BPPV as this is much easier to deal with as itās transient when it happens and also Iāve had good success with Epley manoeuvres and Brandt-Daroff exercises in the past. Unfortunately when I have positional vertigo due to MAV doing any exercises/manoeuvres just makes me loads worse.
So I decided to try the Brandt-Daroff exercises. Big mistake. Instead of just having mild vertigo due to movement, I now feel really rough and sick and unsteady several hours later. I would expect to perhaps feel a bit worse for a few mins after doing exercises, but surely it would quickly settle down?
So my questions are:
Does anyone else on here have MAV and episodes of BPPV?
And if so, how do you tell for sure which it is, when the symptoms are so similar? When I had my awful MAV episode that lasted many months back in 2010 it still started off like BPPV (with transient episodes related to movement) although it got much worse and became a constant thing.
Itās so disappointing to go back downhill again, and Iām scared itās the start of really bad things again.
I get a lot of positional dizziness with my MAV. It can last ongoing for months at a time (many months) then seems to go away for a while. Even when I have my worst attacks, my vertigo is much worse in particular positions yet during the attacks, I have been tested for nystagmus and I have none. The neuro and ENT both feel the positional vertigo is central (MAV) so not my ears. So yes, I get a lot of positonal MAV vertigo.
My MAV positional vertigo feels more like a severe āswimmy headā sensation when I lay on either ear flat. Also if I lie flat with no pillows. I can also feel like Iām falling etc. Itās horrid. When I sit up, itās like I have a fishbowl head that takes ages to catch up.
Can I ask, how you tell the difference between MAV positional vertigo and bppv?
I have been told bppv fatigues over time if you stay in the position. My mav positional dizziness doesnāt. It seems to get worse or stay the same the longer I stay in the same position.
Itās so horrible and I hope you find some relief. Are you on meds? I am on topamax 50mg (started on 50 last week) and I feel a bit worse at the moment. I initially started on sandomigran but had to stop as I felt like a zombie. That seemed to help my positional vertigo I think.
Have you ever found anything to help in the past? Sorry I canāt be of much help. Iām probably asking more questions than anything! All I can say though is youāre not alone and I have had 2 top specialists put my positional issues down to MAV.
Every now and then I still freak out and question my diagnosis, although I donāt know anything else that causes ongoing positional vertigo for months, without nystagymus (not sure of spelling!) Etc.
I had many episodes of bppv before the MAV became constant. It definitely was bppv because it was finally cured by a fifth attempt at an Epley where a specialised PT put me much further back and for longer than anyone had before. I had a really strong reaction with nystagmus etc and she said it might be a particularly big and hard to shift crystal. The positional dizziness was much less after that but the MAV still conjures up echoes of it from time to time. It is particularly bad turning over in bed and turning round too quickly while cooking, in the bathroom etc. I donāt think there are any crystals left, i think it is the MAV exploiting a weakness.
The bppv may also have been secondary to another inner ear issue such as VN as I have permanent damage to the vestibular nerve. So i have peripheral and central issues which is maybe why I am finding it so difficult to resolve. I think aussie girl is right and the way to assess whether it is down to crystals, is if it gradually settles after a minute or so. MAV can strike in so many forms and masquerade as so many other illnesses that it is very difficult to differentiate between the two, especially if you have nerve damage which is being aggravated by the MAV. I tried VRT to resolve the residual dizziness but it was hopeless and I was told I had to get the MAV under control first before it would work.
Thanks for your reply. Itās good to know I am not alone, although I would rather you werenāt suffering with this as well!
Iām not really 100% sure of whether itās MAV or BPPV. The time I definitely felt sure it was BPPV was after my MAV was pretty stable (on pizotifenā¦which I think is sandomigran maybe?) as I only got vertigo on laying down, getting up and turning over in bed. And it resolved itself it after 10-20 seconds, even if i stayed in the same position. I had a Dix Hallpike test which was positive, and in fact I could provoke nystagmus just by turning over in bed. That time when I had an Epley done, it totally sorted it out. I also think I had genuine BPPV at the start of my MAV, but for some reason it triggered off much more than just BPPV, and by the time I got to see a consultant, I wasnāt positive on the Dix Hallpike at all, yet still got positional vertigo. At itās worst it was really bad vertigo (like Iād drunk ten pints of beer and spun round on the spot for a few mins!) where I literally couldnāt move my head off the floor at all. This would go on for ages, and the only way to relieve it was to lie totally still. This could go on for an hour or so. After that, I would still get the falling feelings you are describing for months afterwards, alongside general problems like feeling I was constantly rocking, and a severe intolerance to anything that provokes travel sickness (I went on a bus journey for a few mins and when I got off I was staggering about like Iād been at sea in choppy waters for a week!).
Right now Iām just getting mild spinning vertigo on turning over in bed, along with the swimmy head/falling feeling when I lay down or get up. As trying the exercises made me feel ten times worse for hours afterwards, I am assuming itās probably MAV again. But I canāt really be sure. Itās just so difficult deciding whether to keep trying the exercises or not. Iām scared of making myself much worse again. Today I do feel better than when I posted my message last night, so things are setting down again, but I feel really delicate, like it wonāt take much to provoke things!
Thanks for your reply. Your situation struck a chord with me, as I think I also have vestibular issues as well as central issues. I have some kind of vestibular damage to my right side, although I think itās fairly mild. I also have pulsatile oscillopsia (my vision bounces with my heartbeat) and I still havenāt really worked out if thatās vestibular in origin or central. When I was at my worst even loud noises (such as made by an MRI scanner) provoked nystagmus, so Iām thinking that must be ear-related?
I think this might be that although Iāve been lucky and had it under decent control for a couple of years now (until the last few days!) I have never felt that I am going to be totally free of it or totally cured.
By the way, I feel exactly the same as you when turning round quickly. I notice it a lot when I am cooking and turning from one side of the kitchen where I am chopping stuff to the other side to use the hob.
Sorry I lose track of what meds or treatments people on here are taking! Would you mind telling me what, if anything, is helping you?
Hi Beechleaf
I realise this is a fairly old post but I wanted to revive it as I am having dizziness turning over in bed also. This is mostly very frequent although sometimes I donāt notice is as much. Iām having a flare in symptoms atm and so was hoping others may chip in here if they experience the same? I find if I turn from left to right I would get vertigo so I turn from left to on my back and have to sleep like this for a while before turning on to my right! Had it pretty bad last night- maybe I went straight left to right without knowing!
Iād say itās pretty common symptom. Certainly one Iāve experience a thousand times before, during and well either side of acute attacks/relapses/breakthroughs. For me at least a strong indication everything thresholds are very low and MAV is full on. After my MAV went 24/7 chronic dizzy in late 2014 and I refused my GPās offer of Citalopram I embarked on six monthsā intensive VRT (big mistake) which ENT said might help even though they could find nothing wrong with me. Initially I seemed to experience some slight improvement so I continued, 50-60 minutes a day in five separate āsessionsā. I remember I started in April 2015 and after about four months seeing huge increase in the āvertigo on turning over in bedā symptom. When I discussed this with the VRT therapist she immediately diagnosed I now had BPPV on top of the supposedly unlocatable āearāproblem she was treating me for and prescribed the
Mentioned in the lead post on this thread. Much like @beechleaf, once was enough,
And How. So, Kirsty, be warned. Your symptoms are exacerbated MAV Iād say and will settle when the system becomes less hypersensitive again.
Interesting thread you picked up there Kirsty though. The instruction sheet I had for those exercises told the patient to do them a huge number of times repetitively. I couldnāt believe how many. I subsequently read of a woman who ended up hospitalised as a result. Horrendous. Helen
Iām bored of this exacerbation already! tbh though Helen I canāt really remember when I used to turn over in bed normallyā¦ I always have to compensate to some degree, I suppose worse now because of the upset.
What made you swerve the Citalopram? I think Its looking likely I will need a higher dose of Ami I know @LucyLabrador is at 90mg of Nort now and she is seeing better days but still with setbacks. Headaches are there in the background it seems. Almost asif they have some intention or are threatening me. Ill take it onboard given I know Itās unlikely Ill win
VRT? Jesus no chance! I can just about get around the houseā¦ something I dont want to even entertain is the prospect of those kind of exercises and Iāve been much worse than this in the past! I think they should scrap them bloody horrid things!
It is possible that those exercises do help people with BPPV. I donāt think any of those manoeuvres and that includes the Epley are of any use to MAVers. After all they are designed for peripheral issues like ears. MAV is considered by specialists to have a central origin.
The Citalopram? Because I knew she was prescribing it for Anxiety and I knew that was not what was causing my dizziness. I had no idea what was causing it but I knew it wasnāt that. Also, being very naive at the time and having never had any drugs long term beforehand I read the side effects listed and the very first one listed was āDizzinessā. The very symptom I was trying to clear up. I didnāt appreciate at the time that Dizziness is listed in nearly every PIL as possible side effect.
Wonder whatās exacerbated your symptoms? You havenāt bern taking any new painkillers which could stop the Ami working or swigging strong coffee? Dropped the Migraine Diet maybe? Something must have changed or maybe it is the Botox worn off. Helen
Well thats fair enough! Guess what? I was also prescribed anxiety meds and didnāt take them although I did go along with the GP because I trusted herā¦ not quite enough to take the pills though. I was always predisposed to anxiety as a child and throughout my teenage years. Turns out now that infact it was ADD instead. We are where we are and Iām glad to have a Dx.
I dropped diet a few months ago with no trouble still not having cows milk but I do eat food with Milk listed as an ingredient. Botox most likely? 11 weeks in and it all starts up again. Usually the actual migraine headache not all this motion sickness for weeks on end! Thats MAV for us eh?
Hate coffee anyway so thats fine. Still on decaff max 3 cups a day I read somewhere that the more a person exercises the quicker the Botox wears off and Iāve been back at the gym in recent months enjoying working out againā¦
My mom sleeps with multiple pillows with her head propped in a certain direction (left or right, canāt remember which way). If her head inadvertently turns the other way then she gets worse symptoms. She mentioned this to me many months ago when we were sorting out what she had. I believe she currently still sleeps this way.
In my case Iāve always thought that too. The BPPV attack that was my introduction to VM was exactly that. Iāve never had stand alone BPPV and agreed who would be so unlucky as to develop two such similar conditions at the same time. I always think such dx are just a cop out. A medic hedging his bets. Stand-alone BPPV does exist. I know somebody who has had it for over 50 years and still experiences it regularly now.
Or were your migraines always a result of an underlying vestibular weakness/instability and only recently the vestibular aspect has become more obvious?
Unfortunately, it is probably impossible to tell.
My point is also that you arenāt just a migraineur for no reason, there is some underlying aetiology which is causing the migraines.
65% of the brain is involved with vision and balance and as a correlation and prediction machine it seems reasonable to propose that vestibular sensory instability could negatively impact the normal operation of the brain if it is struggling to cope with uncorrelated fluctuating responses that are hard to map to stimuli consistently.
The brain is running a biochemical, electrical algorithm to tune itself and I suspect it is possible there are scenarios in which this algorithm can be pushed beyond functional limits that may result in migraine.
I fully accept causation might also go the other way (migraine ā vestibular deficit) but I donāt think anything is certain.
tbh though Helen I canāt really remember when I used to turn over in bed normallyā¦ I always have to compensate to some degree, I suppose worse now because of the upset.
I read somewhere that the more a person exercises the quicker the Botox wears off and Iāve been back at the gym in recent months enjoying working out againā¦