As the title suggests, I’m new to posting here, and would write more, but I’m going through a bad phase with my symptoms at the moment so will cut to the chase for now.
I was diagnosed fairly recently with MAV by Dr S, and prescribed Pregabalin, which I am about to start taking. My main symptom, though far from my only one of course, is head spins at night. When I lie down in bed I have the strong sensation of motion, which makes sleep almost impossible and is by far the worst aspect of this nightmare.
I wondered if anyone had had any success with treating this symptom (or, indeed, success in general) with Pregabalin? I would also appreciate any feedback on what to expect when using this drug in terms of side effects etc. I am desperate to stop this feeling of motion in my head (which I think is always there but just much more noticeable when lying down) and also of course the constant exhaustion that comes from that. I also have bad neck/shoulder pain and I can’t decide if this is caused by, or helps to cause, my symptoms, but it definitely feels linked.
Thanks in advance for any help or advice. I have lurked here as a reader for a while and have found the posts invaluable in trying to understand and come to terms with my diagnosis.
Spinning sensation dimished but not eliminated for me with Amitriptyline. Enough to sleep though except on a really bad night. I’m positive is some kind of positional vertigo due to disturbance in inner ear fluid. When you are lying down the clot or bubble reaches one of your movement senses and you get that sensation.
Neck stiffness I got too, definitely linked, but eliminated with Amitriptyline. I believe it’s down to your brain switching to more reliance on your eyes so your neck gets stiff in an attempt to keep them steady.
Hi, thanks so much for that reply. I suppose Dr S has given me the Pregabalin because he thinks it is the best one for me to try first. However, I’m reassured to hear that you had similar symptoms and got some relief from the Amitriptyline. If I don’t do well on the Pregabalin then I have the option of asking to try the Ami instead.
I agree with you about the link to the ears, I get a feeling of fullness there and I’ve actually been hearing a slightly ‘bubbling’ sound in my right ear the last few days, just when my night spin symptoms have seemed to escalate a bit. I did have a bad ear infection about a year before all this hit, but I don’t know if that could be linked. GPs talked vaguely about Labyrinthitis etc but didn’t seem to know what to do with me apart from prescribe the basic anti vertigo meds. I did my own research to find a balance clinic. I don’t know whether it would be worth me trying to see an ENT specialist too.
Do you sleep kind of normally now? My sleep is really fractured and even on a really good night it would be no more than 5hrs, even though I feel like I need more like 10 to even try to recover from this. What you’ve said about the neck stiffness being caused by my brain relying more on my eyes makes sense. My eyes get tired and I’ve a pretty much constant headache. Do you, or did you, get blurred vision too? On bad days that seems to be a thing for me now too…not constant, but more of a momentary thing that then settles. All great fun obviously…
A whole smorgasbord of symptoms without meds.
Sleep for me goes in phases. When the ear is having a good run I get a full nights sleep. Other days not so good, but it’s night and day compared with how it was without medication when I’d regularly wake up middle of the night with a migraine and vestibular ‘attack’.
I think time helps too. I’m positive that for many this thing tends to improve over time. But it takes AGES punctuated with periodic relapses that wax and wane.
Btw I get a bubbling in the ear regularly too, usually on getting up in the morning after having been laid down for a good while. I swear this has got less over time and it’s as if it’s broken up into smaller bubbles.
I think it’s the taking ages and the relapse aspect that I find the most depressing. That and the sleep issue as it feels like there’s no escape. It’s stating the obvious, but I just want to be free of it once and for all. I tried to defer meds and just do VRT and the anti migraine diet, but clearly I have to start the drugs now. It certainly sounds like starting medication was the beginning of a turning point for you so I’m hoping I have a similar experience with the pregabalin. I’m worried about side effects and apparently it can cause weight gain, but I know I can’t go on like this (about 2 hours sleep last night and dreading another). All the things you,or at least I, can’t do now (eg drink alcohol) are also annoying. It feels like it just narrows your life.
OK let me lay this down for you:
Don’t waste any more of your life avoiding meds, if they work for you your quality of life will be mostly restored and you can get on with it, meet your friends, have some alcohol, even the odd coffee.
VRT does NOT work for MAV. MAV is IMHO a variable lesion which makes it IMPOSSIBLE for the brain to compensate until the condition settles down*
There seems to be merit to the diet regime, but a lot of the time it’s not enough.
The variability of the lesion guarantees migraines. The migraine is IMHO a natural response from the brain as if its metaphorically throwing its hands up and giving up on trying to compensate.
MAV is probably almost completely benign EXCEPT for its psychological impact. If it were not (ie there was serious hearing loss), it probably wouldn’t be MAV. The meds help you get the symptoms under control to a point where you can start to control your anxiety and depression.
ENT technology is SO UNDERDEVELOPED, they have NO IDEA what’s wrong with you BUT the symptom management is PRETTY GOOD!
*If you need pretty much proof of this they did a study using healthy subjects where they got them to wear special headsets. They used prisms on a headset to switch the eyes around and make turning right appear to be turning left and vice versa. They wore this headset during waking hours. Researchers wanted to see how long it took for these healthy subjects to compensate naturally. They did not do exercises. It took their brains 5 weeks to compensate and were able to walk normally, negotiate a maze and do tasks. When taking off these headsets towards the end of this study it took the subjects 3 weeks to compensate back to normal. Conclusion: the brain rocks so long as it has stable inputs.
Hey, thanks for that. You have definitely re-affirmed for me that medication is the way forward. To even think there might be a chance of getting my life back…
I agree the psychological impact is HUGE. The indefinite nature of the illness and the possibly trial and error element involved in medicating can seem overwhelming, but I suppose all the more reason to get started on something and take it from there.
The psychological response is the greatest challenge any sufferer faces and in my experience the meds were invaluable in supporting this process. I feel real sympathy for those who don’t find a medical solution because I know how hard the times were for me when I was not on medication (at one point I was thinking about, if not planning, suicide!) That said, I know my underlying condition HAS improved, so time can be on your side too … there IS HOPE!
One more point: consider seeing a psychotherapist, it can be very helpful, especially initially.
Propranalol worked for me - im not getting any vertigo or nightime attacks. Best to try and work out which areas are malfunctioning…is it ur ears/brain/with me im pretty certain its a combination of MAV from the brain stem and dodgy signals from my neck and back…ear testing was virtually nill with no eye twitching…if you can work that out it may give ur doctor thoughts on the correct medication for you…its the brain getting overloaded with bad signals from somewhere that is causing this…
I completely empathise in terms of how low this can make you feel. It’s the thought of living the rest of your life and things never getting any better.
I’m looking into the psychotherapy option. This whole thing can seem pretty soul crushing, and then the symptoms are so anxiety inducing. On a different forum, not so much due to using it for health benefits (…), I read that pregabalin can result in euphoria, so, you know, fingers crossed…
Paul…what dose of Propranalol do you take? Did you have bad spinning at night that’s now stopped? I was prescribed some by a GP (possibly at too low a dose) and I felt that it didn’t touch my symptoms much. To be honest, I didn’t really perservere with it for long, but maybe I should have.
I think I got my diagnosis of MAV mainly because of my prior history of migraines. I don’t get migraines as such now; it’s more the feeling of motion and a constant dull headache, like a tension headache. I’ve had no testing done on my ears at all so really that’s never been explored, but, as I said above, it does feel like there could be a link to the ears. I do often feel like I just wish I knew exactly what the hell is going on in my head. I find it strange to be suddenly aware of my ‘vestibular system’ when I never gave it a second thought before. Now I can’t be unaware of it, sadly, but that doesn’t mean I feel I fully know what’s happening.
Well I was so euphoric the day after I went up to 20mg of Amitriptyline I went for a 20km run (I normally do 5km) and ended up pulling a deltoid during sprinting and didn’t sleeping properly for a week from muscle pain! lol
Ha. For me running is a slightly masochistic pursuit anyway (generally only employed if I’m being chased or about to miss a bus), but 20km from 5km is pretty impressive, so you do seem to be on the right drug. I feel I’m doing well if I manage a few brisk walks a week (walking is not a big problem re dizziness/vertigo for me and I tend to feel a bit better outside) but I do feel an energy slump by evening the days that I do it. Mainly in the context of any activity pretty much exhausting me at the moment…
Walking is probably better for MAV, cos weirdly its harder, but running is good at killing anxiety!
Yeah, I find going on long walk on bad days is hard for like the first 10 minutes, then the symptoms tend to reduce.
im taking 80mg a day …one tablet in the morning and one in the evening…its a drug to be started off on one tablet amd move onto two if it is ok…coming off them slowly the opposite way…i tend not to get spinning during the night but have had a couple of vertigo spinning attacks while laying down a couple of years ago, I did get a few earthquake type vertigo attacks while sitting at my computer and looking down at my keyboard. If you read through the posts you will see one about a patient who recently saw Dr Suritheran and he explains why we get MAV - basically the brains capacity to balance itself is overloaded and the brain uses spare space to compensate…therefore our brain is working too hard to compensate and migraines , vertigo and all our other symptoms happen. Its all medical issues and nothing to do with stressing about the symptoms etc - although anxiety and stress dont help …our body naturally goes into fight or flight mode because of the overload so understanding of what is happening to us is key in trying to calm down and already overloaded brain positioning system.
Kitkat if you look down the posts and read - an Appointment with Dr Surethiran - that post probably explained MAV to me more than any other I have seen.
I am not familiar with the drug but definitely the symptom. I am most affected on right side and when I start to “swim” the first thing I do is lay very still and find a focal point to my left for just my eyes. I hold steady there and try not to panic. It would never have occurred to that panic would be part of MAV. Balance PT has helped w eye exercises.
I am on BP med (I forget) but I don’t notice that that has helped.
It sucks. And what is worse is the constant fear of IT happening (my worst 2 eps involved 24 hours of intense spinning and extreme vomiting). Also the concern that other people think you are exaggerating because, unless they are there for a full blown ep, it is hard to believe.
I find I can’t sleep on my left side (which used to be my sleeping side), nor on my back, or indeed my front. So that leaves my right side, and I’ve lately started sort of hugging an extra pillow which seems to help to steady my head a bit (this is on top of the 2-3 I use to prop me up as lying flat is definitely out of the question, although sometimes this seems to hurt my neck). Sigh. it’s all such a pain (literally).
Re my original question btw…I’ve been away (just catching up with all the forum messages) and so haven’t yet started this drug but am about to soon. Is no one else on this??