Yes, and it ruled out acoustic neuroma (phew, that’s life threatening!).
The challenge with MAV is there is a lot of uncertainty. There is no identified aetiology, for example.
You can start to solve that by seeing improvements if you take the advice people offer like trying the diet, supplements and trying the meds.
Your biggest challenge now is a mental one (not helped by your daily symptoms). For that you need support. I really recommend you go back to your medical professionals and request counselling support to help give you more fight. I did it and it was fantastic!
Ive beenndping 3 yrs of it. I need vm help. Ypubeatbwhatever now do youbfear you’ll re lapse again. I was symptom free for 1.5 yrs and it came back. Im.worried it will turn into md. I want to know how to heal. Step by step x i had an mei in 2015 do i need another. Did you wber get night vertigo in sleep on replaps??
Unlikely. If they’ve ruled out neuroma once, it’s probably not worth going to have another. The only people qualified to tell you for sure are the doctors though.
Have you been to a ‘balance centre’? A specialist place where all the staff are experienced with vestibular patients?
I used to get vertigo when lying down, yes. At one point at the moment of lying down I’d get it. That went away. I have more recently only had nystagmus when lying down, but only minor, didn’t bother me much. My relapse this week was purely neurological … felt a bit ‘odd’, nothing dramatic. My relapse went in 4 hours. It used to take 2 weeks to recover!
Because for me with MAV, they work! I hate meds generally. I’ve never taken any med long-term in my entire life until MAV hit me. Since MAV I broke my left shoulder and I only painkillers about four times with that total. I hate meds really BUT…
With MAV and no meds I got worse and worse. Far worse than you I suspect. I was in bed, unable to open my eyes, constantly nauseous, unable to stand up for weeks on end, unable to take any light, had to live in the dark for many months and I felt I had no choice.
MAV is a medical condition. It’s not supernatural or magic and a fairy with a magic band doesn’t come along and make it disappear overnight. For me medication was the only choice to get back my life.
Yes. When I first had MAV my attacks were quite short. Never longer than 72 hours. Then they would go away and I’d have months until the next one so was ‘symptom free’. Unmedicated my condition got worse and was chronic - with me 24/7 for several years - but with the meds symptoms reduced eventually and over the last nine months I’ve had some totally symptom-free days sonetimes three in a row. Many days now I have days with just an occasional symptom. So,
I’d be scared these days, NOT to take them. When you ask your doctor for them as @dizzy3 says ask for some that cover both anxiety and MAV because I think perhaps your anxiety is what is causing much of your current confusion. Helen
Ok well ill write it all down. Currently have the neck massager on as my necks in agony. Here we go, 10 yrs or so ago of my memory serves me right got it in my sleep. Say neurologist at a hospital he said i have bppv tests and put waternin my ear was hell. Never again.He said no chocolate 3tc. I did so for a long time. It xame ot wemt and i could function . Always stuck around but ate whatever i wanted aside from chocolate caffiene . Then 2015 my bf of 8 yrs left me and my best friend passed away. And had a car accident. I had finished work lent lback in bed amd felt like i fell back into a hole. Boy did i panic. A month later i was at a hair salon went to pick up my bag and boom. It felt like bppv but ill never know now. My journey began. From 2015 to emd of 2016 i deveoped severe panic disorder and agoraphobia from the vertigo. I developed irregular heart veats called ectipic seen a cardiologist 4 tines in 2 years. So there Wasnt a day that went buy i wasnt dizzy or had episodes but to this day cant seperate if it was sever panoc attacks as they male u so dizzy but pretty sure it was vestibular as i was so sensitive. First stop a neurologist. He said i has vestibular neuritis but no tests were done just am aggresive epley and mri. Then i saw an ent he said anxiety. I was in there a total of 5 min he was an idiot. Then i saw another ent . Twice within a yr apart. He did hearing tests and put wires in my ears to see if i had fluid. All clear. Diagnosis was remnants of bppv. Then i saw a neuro physiotherapist. I saw her 2 yrs of vrt amd she sent me to a top otolaryngologist he said vestibular migraine. Saw him twice. Did vng tests he prscribed me valium amd said it would supress but inwanted to heal not a quick fix. So i went to a another ent and did 4 hrs of vestibular testing in September 2018. All normal. she said vm and tmj sent me in my way . I still wasnt satisfied. Saw another top neurologist specilising in vestibular disorder and he too saod vestibular migraine and looking at all my results and his findings. In rhis time in have been seeing my chiropractor who is a functional dr specialist in balnce disorder. He has sent me away for 12 weeks amd said to focus on diet take b complex vit d and magnesium. All of 2017 until August 2018 i was sympton free. Aug 2018 being my 3rd scary attack in 4 years was differemt i woke up sverrly swim heaed. Lasted 10 hrs. I wemt hospital he said bppv a week later it happened again and they sent me hime as i refused meds. I just always fear its something sinister as new symptoms pop up. Then 3 weeks ago the vertigo in my aleep started got a mini attack in sleep. I woke up and still do sweating. My eyes were in agint rhe next day. Felt cloudy vision wemt optometrist they said severe dry eyes. So i do drops. As of 3 weeks ago Im trying eat more as everytime time i get dizzy i freak out as i also fainted 3 months ago .I have alot of stress in my life unwell mum and abusive environment but i cope. Im.also aneamic and have hypothyroidism controlled by meds. Now im left with whoosing sounds in ear left predominantly chronic tinnitus vertigo in sleep right now. Why was i ok and it is back.
There are lots of disappointing doctors The problem is partly science has not determined why VM/MAV etc. occurs. We do know however a few things that help. Please read through the links I gave you and keep hunting for a doctor who you can work with to optimise your care.
I saw 4 doctors. My circumstances were personal. I was diagnosed with MAV by one, MAV or Hydrops by another, Hydrops or “something central” by the 3rd and then Secondary Hydrops after PLF by the last one.
In any case my symptoms are basically described perfectly by MAV.
I got better with time and patience, by giving up caffeine, by giving up heavy gym and raising my head in bed. It’s hard to know for sure what helped and what just seemed to help.
I’m far from fully recovered (my hearing is still dulled, my tinnitus is persistent), I lack the level of confidence I once had, but I know longer dwell so much on it, I have zero anxiety, almost no depression and can do most things now.
Hahaha,sorry to laugh, but 3 pillows forever is not the worst outcome Go buy three gorgeous comfy pillows! (I use two then one, the last one on my upper back). Over time things have improved so I can sleep flat but prefer not to in case this is helping me.
You could also consider an electronic recliner. I almost considered one for a while, but it ended up not necessary.
Yes, absolutely I believe so. So it’s really important you get stress (and anxiety) under control. Consider counselling and life changes to reduce stress. Go on long walks amongst nature. Do activities you love.
Some stress is unavoidable though.