The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

Positional vertigo

I’ve 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 don’t 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 I’ve been able to carry on with day to day life without many problems.

I’ve had a few dips, but they’ve been short-lived luckily. I’ve 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 it’s BPPV as this is much easier to deal with as it’s transient when it happens and also I’ve 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.

It’s so disappointing to go back downhill again, and I’m scared it’s the start of really bad things again.

Hi Beecleaf

Sorry to hear your not feeling great.

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 ‘swimmy head’ sensation when I lay on either ear flat. Also if I lie flat with no pillows. I can also feel like I’m falling etc. It’s horrid. When I sit up, it’s 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 doesn’t. It seems to get worse or stay the same the longer I stay in the same position.

It’s 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 can’t be of much help. I’m probably asking more questions than anything! All I can say though is you’re 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 don’t know anything else that causes ongoing positional vertigo for months, without nystagymus (not sure of spelling!) Etc.

Anyway, I hope you’re feeling a bit better.

Hi,

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 don’t 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.

Hi Aussiegirl,

Thanks for your reply. It’s good to know I am not alone, although I would rather you weren’t suffering with this as well!

I’m not really 100% sure of whether it’s MAV or BPPV. The time I definitely felt sure it was BPPV was after my MAV was pretty stable (on pizotifen…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 wasn’t positive on the Dix Hallpike at all, yet still got positional vertigo. At it’s worst it was really bad vertigo (like I’d drunk ten pints of beer and spun round on the spot for a few mins!) where I literally couldn’t 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 I’d been at sea in choppy waters for a week!).

Right now I’m 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 it’s probably MAV again. But I can’t really be sure. It’s just so difficult deciding whether to keep trying the exercises or not. I’m 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 won’t take much to provoke things!

Thanks for listening :slight_smile:

1 Like

Hi Nubs,

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 it’s fairly mild. I also have pulsatile oscillopsia (my vision bounces with my heartbeat) and I still haven’t really worked out if that’s vestibular in origin or central. When I was at my worst even loud noises (such as made by an MRI scanner) provoked nystagmus, so I’m thinking that must be ear-related?

I think this might be that although I’ve 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?

Thanks again for your input.

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 don’t notice is as much. I’m 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! :nauseated_face:

Same!!

I’d say it’s pretty common symptom. Certainly one I’ve 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 GP’s offer of Citalopram I embarked on six months’ 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 ‘sessions’. I remember I started in April 2015 and after about four months seeing huge increase in the ‘vertigo on turning over in bed’ symptom. When I discussed this with the VRT therapist she immediately diagnosed I now had BPPV on top of the supposedly unlocatable ‘ear’problem 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 I’d 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 couldn’t believe how many. I subsequently read of a woman who ended up hospitalised as a result. Horrendous. Helen

1 Like

I’m bored of this exacerbation already! :woman_facepalming:t3: tbh though Helen I can’t really remember when I used to turn over in bed normally… 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 It’s unlikely Ill win :eyes:

VRT? Jesus no chance! I can just about get around the house… something I dont want to even entertain is the prospect of those kind of exercises and I’ve been much worse than this in the past! I think they should scrap them bloody horrid things! :triumph::nauseated_face:

1 Like

It is possible that those exercises do help people with BPPV. I don’t 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 wasn’t 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 ‘Dizziness’. The very symptom I was trying to clear up. I didn’t appreciate at the time that Dizziness is listed in nearly every PIL as possible side effect.

Wonder what’s exacerbated your symptoms? You haven’t 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

1 Like

Well thats fair enough! Guess what? I was also prescribed anxiety meds and didn’t take them although I did go along with the GP because I trusted her… 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 I’m 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 :roll_eyes: I read somewhere that the more a person exercises the quicker the Botox wears off and I’ve been back at the gym in recent months enjoying working out again…

My mom sleeps with multiple pillows with her head propped in a certain direction (left or right, can’t 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.

1 Like

A post was merged into an existing topic: Bebop’s mum’s progress

This topic was automatically opened after 35 hours.