Vestibular Neuritis- any recovery stories?

Cally 44573, been going thru the same thing, be 3 yrs in Mar. I was having a few days at a time where it was bearable but been having this Vestibular migraine for 33 days now. They were like lasting 4 days, then 8 then 19 now this one won’t stop. I have sleep on my couch propped up for the last 6 mos. Before that I was back & forth, bed to couch....Been everywhere, even Cleveland twice, tried 2 different Drs there & they told me ( very bluntly)I wasn’t getting a different  diagnosis. They saw everywhere I had been & all the different specialist that I had seen, just wanted to be sure, wasn’t ready to accept it, still not.... Keep in touch if I can help answer any question, I will & let me know if you come up with any thing, or have you taken anything that will stop the  nausea? Will give any or accept any help I can. Thanks... Rebecca. On Fb also as Rebecca Murphy Wells, IM & we can discuss things also. Thanks again...Hope it lets up for you. Sometime I just have to be very still & not move to get relief. 

I just discovered this thread. It’s a relief to see others describe what has been nearly impossible to describe. I’ve been off-balance since Dec. 2015. My symptoms and experience are a long story.

For now, I just want to tell you that in my case an exam by an optical-neurologist resulted in prisms being placed in my glasses. My eyes weren’t focusing together apparently. The prisms stabilized me when I’m on my feet, it made a big difference. I still have the awful swoosh sensations in my head when I move but I became far far more stable on my feet. 

In time I will read all of the thread and add to the discussion as I can. 

I’ve been off-balance since Dec. 2015. My symptoms and experience are a long story. 

For now, I just want to tell you that in my case an exam by an optical-neurologist resulted in an improvement: in prisms being placed in my eyeglasses prescription. My eyes weren’t focusing together apparently. The prisms stabilized me when I’m on my feet; it made a big difference; I nearly cried. I still have the awful swoosh sensations in my head whenever I move, but I have less pain in my head and I became far more stable on my feet with the prisms. 

In time I will read all of the thread and add to the discussion as I can. 

cally45573. My biggest relief has been the “Gravol” for the nausea. Was referred from someone on this thread, a couple of people told me it had helped them. So ordered it & it has been a life saver. Thought I was never going to get any relief but it sure helped. It is for motion sickness & I would recommend it to anyone. Ordered it from Amazon, 40 for $10 & 80 for $20 

Well worth it 👌 I have some hope now. 

Please let me know if you covered, and what treatment you had.

Sab

Hi,

I thought I'd write this post just to give some of those in this thread a bit of hope. It seems that all of these threads are always full of people suffering, and you rarely hear anything positive; which is understandable, because once people recover, they just want to get on with their lives!

I went down with VN/labyrinthitis at the beginning of 2016. Like a lot of people here, it seems that a cold virus brought it on initially. I was sitting down one evening at the end of the cold, got up and the room was just spinning rapidly from left to right, and I felt extremely sick. I went straight to bed, and was somewhat better in the morning. It didn't take much internet research to work out that I had labyrinthitis/VN, and I was reassured that it would only last a few days, or a couple of weeks. Things slowly improved, and at the end of 2 weeks, I was largely better, although not right, and then everything came crashing down again. To cut a long/very tedious story short, for 6 months it affected me horribly, and for the first year, life was made very difficult by it (which is a bit of an understatement). I would say that I am about 98% better now, and the last year or so I've basically been fine, with the occasional blip and a sort of gradual 'fine tuning' so to speak.

I found this thread, and similar ones very useful when I was ill, but after a period of time, you really need to stop reading these forums and just get on with getting better, living your life and trying not to think about it too much. If there's one person's posts on here you should definitely read however, it's Terrys, pretty much all the advice he gives is useful, and his experiences of the illness largely ties in with my own.

I have enormous sympathy for anyone who's going through this. To this day, I've only met one other person in the flesh who had it for as long as I did (although I've met a fair few who had it for the more typical couple of weeks/several days), and it is so hard to explain to people what it's like, as none of them really get it. Some of the side effects, such as the lag when turning your head in busy environments, are just truly unreal, and make it sound to others as if you've been taking magic mushrooms!

I also had huge problems with anxiety, which for someone who's never had any issues in that area before, was really difficult to deal with, as were people's attitudes towards it. There is a perfectly rational explanation for this as well, the amygdala which processes the fight and flight response, is also responsible for processing balance signals from the inner ear, so it makes complete sense that disruption to the signals coming into this part of the brain would cause anxiety issues.

To recover, once the initial few weeks have passed and the inflammation from the virus has died away, you really do just need to push yourself forward. I forced myself to do the vestibular exercises every morning and every night, and just generally forced myself to be active. Don't avoid crowds, try and get as much varied outdoor exercise as possible, and do anything you can to help your brain relearn and adjust to the new signals. You've seen toddlers walking around drunk as they learn to balance? The same is now happening to you (albeit in a slightly different way) and sitting round the house will not make it better.

You do need to be careful, I was in and out of work for the first three months, and in total, probably had about 6 weeks off. In the initial stages, I was overwhelmed with fatigue and felt very confused and just generally a bit thick. I used to have a nap at lunchtime, and then a brief nap after work before getting on with my evening. You can only push yourself so hard. Likewise, if you go too overboard with vestibular stimulation, you probably will feel awful the next day with a doubling down of the symptoms as your brain struggles to re-program itself, but don't let me kid you, you do need to push yourself, but just be aware of your limits at the same time.

I think it's hard to encapsulate in one post everything I experienced with this illness, but suffice to say, it was one of the worst things that's happened to me, and I had pretty much all the bizarre symptoms listed to some extent or the other. I did get through it though, and so will anyone else if you persist with working through it; do the exercises and do everything you can to stimulate and thus rehabilitate your vestibular functions. Do not neglect your social life. In my case it took about a year to mostly get back to normal, and probably a further 6 months to fully feel right again. It is a gradual improvement, which at many times is up and down, with two steps forward and one step back. Today, other than the very occasional blip, and some issues if I get very drunk or very tired, I'm essentially completely back to normal, and the only other person I know who had this, has had pretty much the same experience as me.

So don't give up! You will get better if you work at it, and it will just all seem like a distant dream when it's over. This is something you can fully recover from, it is not a debilitating disease that will change your life permanently.