Vestibular Neuritis- any recovery stories?
Posted , 157 users are following.
Hi, new poster here. Have been suffering with VN for 10 weeks. I was initially diagnosed with a gastro virus due to my main symptoms being dizziness, nausea and diarrhoea but after seeking private ENT consultant I was diagnosed with Vestibular neuronitis. I secretly suspected it was this but think I was in a bit of denial as all the stories on the Internet speak of long term chronic suffering and that terrifies the life out of me.
This condition is hell! I am dizzy and nauseous 95% of the time with lots of ear and head pressure. When I get really dizzy and sick I also get diarrhoea. I've lost a stone and a half in ten weeks as I can barely eat. It even plagues me in my sleep with dizziness making me wake up and feel horrendous, until I get up and move about which eases it a little. I have been off work since the start and need to return soon which seems impossible right now.
I have started seeing a physio and have been doing VRT exercises for a week which have made me feel much worse. I used to have the odd few hours where I felt okay but not in the last couple of weeks. Can it get worse before it gets better? Reading, writing, typing, watching TV all make me feel Worse too. I feel like there is literally no pleasure in my life right now and I can't even get relief in my sleep. I have two kids and have kept as a active as possible, caring for them and trying to keep life normal for them so I haven't been hiding away.
I don't seem to have had the acute stage at the start which slowly improves, I've just been the same for about 8 weeks and worse for the last two.
im scared I'll,never get better. I would love to hear from anyone who did get better after this time, or at least improved enough to enjoy life again or who was able to return to work. Did VRT help anyone out there and how long did it take for you to notice improvements? Sorry for all the questions! Any advice would be very welcome
Thanks
7 likes, 610 replies
roseann10971 cally_44573
Posted
This is a general question, but i do not know how to post a general question. Are there medications that can trigger this syndrome? This unfortunately sounds very similar to the horrible symptoms i am having, which started after i started taking these new medications for chronic pain:
BELBUCA
NUCYNTA
ZONISAMIDE
I have chronic pain and was on Methadone and Vicodin before, without having horrible side effects. But for the past month or so, i have had vision problems, horrible tinnitus, fatigue, dizziness, and temple headaches. I think these new drugs might be to blame. NUCYNTA lists side effects very similar to mine. But I stopped taking it over a week ago, and i really have not felt any better!
Now I am really scared!
nikki1978 roseann10971
Posted
Hello,
I'm sorry. I do not know about those medicines. I would call your doctor that prescribed those medicines and talk to him or her about your concerns. I hope you feel better.
petergcrow cally_44573
Posted
Quick snapshot of my story.
Right side "went" 4 years ago with 95% recovery...only problems manifest when walking in the dark and riding my bike.
Second episode on left side August last year. catastrophic at first....1week in hospital....drip....catheter, the lot.
4-6 weeks before able to walk without a stick .
7 months down the line can walk on flat surfaces, cycle in no or little traffic and drive, again if traffic light and distances short.
Main issue is mental fog when trying to use body and mind together. Its as if i dont have enough RAM with my other balance systems to work overtime (keeping me vertical) and think. Activity requires sleep time to recover.
External noise, movement, lights and odd wavy linear patterns set off my mental fog. I can see the world but it doesnt register....odd symptom.....to be able to see but not able see. Thinking breaks down when I fog....my murds get wuddled up.
Symptoms good if stay below my fog threshold.....typing this just brings on the beginnings of symptoms.
I can cycle, but not cycle and chat at the same time.
Still off work and decidedly wary about trying to work again.....my job is mainly mind, but does have some movement and LOTS of multitasking. (I am a GP)
Feel guilty about the work thing....and worried for my mental future. (and finances).
I can cope with the physical limitations....but worried for the intellectual side of my life.
On a positive.....getting slowly better.....(or am I just getting better at keeping my activities below the fog threshold)
best wishes to all of you living in the wobbly foggy world of bilateral vestibular hypofunction.
fred46459 petergcrow
Posted
Sorry to hear that, that sounds incredibly unlucky and rare to get it twice, and to have such catastrophic damage in both ears... Was it a virus that caused it for you, or something else?
I too have minor problems still, looking down at night while walking can get a bit interesting for example, but they don't really bother me, a bit like the inconvenience of wearing glasses or the twinges in my back from an accident years ago, it's minor and not something you really think about it.
petergcrow fred46459
Posted
hi fred,
no known cause....not part on another disease process .
as with you the balance problems are pretty easy to live with....i can cope with not being able to walk on soft sand.
my guess is another few months and the fog will receed
all the best
pete
fred46459 petergcrow
Posted
I wasn't as badly affected as you initially, but I do recall life still being very difficult around the 6/7 month mark, even though I was back at work and trying to live as normal a life as possible.
Things were greatly improved by the end of the first year, however, so hopefully it will be the same for you, and hopefully this will be the last time. you don't seem to be doing too badly considering.
With regards to the fog, symptoms seem to disappear at different stages of recovery for different people, so hopefully it will get better sooner rather than later.
SOcean cally_44573
Posted
Hello. I am in the same situation and it is awful. Did you end up recovering? I do not know how I got this and I am scared.
SOcean cally_44573
Posted
How is everyone doing now? Any recovery stories? just diagnosed at 31% hypofunction. Could use some hope....
petergcrow cally_44573
Posted
Hi Cally,
I think my vestibular function improved for 10-12 weeks and since then has not got any better.
I am better at living with the disability and fog less often. I lead a fulfilling but adjusted life. I use a cart to golf (don't always manage to finish the round), I cycle and walk on paths, I take an afternoon nap.
I am in the lucky position of having been able to retire and manage my time and activities.
I work hard at trying to stay fit....swim twice a week (breast stroke or free style with a snorkel), gym twice a week with emphasis on core and balance exercises and golf once or twice a week (mainly for the social contact).
I avoid busy places as best I can and wont drive anywhere new without my wife there to act as navigator and an extra pair of eyes.
The anxiety stuff is interesting...when symptoms are triggered my anxiety levels ramp up irrespective of whether I feel anxious or not...I think this is neuro-physiological rather than neuro-psychological. I think of it as part of the illness rather than my emotional reaction to the illness. Maybe a rationalization but it makes me feel better!
As far as the returning to work question...I was lucky, didn't have to. Quite bizarrely I have two friends with this, one is working the other, like me, was in a position to retire, so did.
Adaptation is the key..along with keeping sane...I saw a psychologist.
Keep in touch
Pete
james979 cally_44573
Edited
hi guys! I dont know if anyone is still active in this thread but I just really wanted to get some consensus from other Vestibular Neuritis sufferers.
I have had vestibular neuritis for a few months now.... at least that's what the specialists I have seen currently think it is - it certainly fits everyone else's experience perfectly. I just wondered - did anyone else develop chemical sensitivity with this?
I seem to have developed a strong case of sensitivity to even everyday household chemicals which makes my vestibular neuritis worse! I havent heard anyone else mention this specifically so I dont know I'd that's part of the disorder or whether it is something entirely separate. has anyone else noticed their symptoms getting worse when they encounter household chemical smells?
many thanks indeed.
James
elizabethwilde james979
Posted
Hi there James, I'm three months in and it is trigger for me. It can make me feel like I've taken a trip. Some times i feel I'm dying and going to stop breathing or have a stroke. Lights at the supermarket do it to me too. I hate it. I have a lot of weird symptoms with mine.
holly02163 cally_44573
Posted
hi im just under investigation atm as they think i have vm .can i please ask what mri's u guys have had to rule out any other cause as iv only had an mri without contrast but been really dizzy and weak confused do any of you get this ? if you could respond id be gratefull thankyou.
joshuapryce1987 cally_44573
Posted
Everything in this life can change it good ways and in bad ways, and it all depends on you and the steps you take and the seeds you sow.
taiwo57544 cally_44573
Posted
How are you feeling now ?