I have had problems with my balance fine the end of January. I'm just recovering now and feeling much better. Although not quite normal but a million times better. When I began with this I could hardy walk from one side of the room to the other. Felt very off balance. I have been waiting for balance tests since beginning of March and have got a date now next week. My concern is that I may never know what's caused it. I have had this before but I just had an mri scan which was clear but the consultant said inner ear damage. I am concerned that this time as I am having balance tests when I feel alot better that I may never know the cause. Or if you still have it slightly can it still be picked up. I wish I could have had my appointment sooner. Feel like I'm going to turn up like a fraud! Lol if anyone has experience of this I would be really grateful. I thought I was having a balance test mo the ago and when I got to the hospital it was just a hearing test.
Fine= since
Sounds like what I've been dealing with I've got labrynthitis right inner ear damage. I'm doing vestibular rehabilitation home exercises 3 times a day to re train my brain to work work properly.
Hi Michelle yes I do the exercises too. Have you had a balance test?
Yes I've had all the tests. Caloric test showed my weakness in right ear. I've had it since 1sthe February it's just awful.
You've had it as long as me. It is awful isn't it. Are you beginning to recover?
I'm not as bad as I was at first no but still not right really feel like I'm swaying most days it's awful. Did you have sickness at first?
A little bit of sickness but this time not so much very very bad headache at first. What about you?
I can walk now but I just don't feel right. At first i looked like i was walking on the moon. Now im not sure if you could tell unless i said although i do use a stick when im out of the house just to give me more confidence to walk on my own.
When I'm sat I sometimes feel like I'm swaying. But it's a lot less than at the beginning. And it comes and goes now. Some days are better than others.
I'm worried the balance tests won't find anything wrong . I don't want to always be like this even though it is a lot better it's not a feeling I want for ever. Worried that the test shoukd have been done when it was more obvious. What do u think?
Yeah athat's first I couldn't lift my head hardly of the pillow everything spinning and constantly been sick and had to have help to walk to toilet that lasted over a week then had a really heavy head for 2 months and feel off balance now I just feel swayed and my heads always fuzzy 😞. I was so healthy fit before I got this im only 30.
I know what you mean it just hits out of nowhere. I'm only 40. It's a dreadful feeling. I've not been able to work. How about you?
I know what you mean as well about feeling fuzzy. I felt foggy and couldn't remember things. I still have this but no where near as bad.
I'm back at work now but it's not easy at all. Some days I'm really spaced out and I forget stiff also.
Hi
Sounds like you've been through vestibular neuritis for a second time...just like me! Horrible isnt it? You experienced a damaged balance nerve due to a virus the first time. This will never heal but your brain learned to compensate. The virus then reoccurred and you experienced it a second time. Again, thankfully, your brain learned to compensate for a second time. The testing you will have will show the damage in one of your ears no matter when the testing takes place. Don't worry....you're not a fraud!
Best of luck to you.
Debbie
So my diagnosis is not the same as yours, but I had similar issue with sudden hearing loss in my left ear. Fortunately, it did not cause vertigo, but it can in some people. It came back in 72hrs with high dose prednisone. I also suffer from Vestibular migraine, but the drs say the current thinking on the sudden hearing loss is viral (some think migraine may also be a cause). They think it is linked to the herpes family of viruses, kind of like cold sores and shingles. Anyway, some people who have Meniere's disease believe the antiviral medicines given for herpes help their disorder. I am wondering for those of you with labrynthitis or vestibular neuritis- have the drs ever mentioned the use of antivirals? I asked mine, and he said there wasn't enough proof to show it worked or something to that effect.
Forgot to mention- I had the VNG tests. You have to follow the directions and not take certain meds before. I take meds for migraine and dizziness, and was told not to stop them. But then they did see some upbeating nystagmus at one point, but said it was most likely from the meds! LOL, so I don't know how worthwhile the tests were for me. Two MRIs of brain and IACs are fine, so neuro just said the finding was vague and basically meaningless. The caloric test is where they put hot and cold air or water into the ears to cause vertigo. Well my left ear (the bad one) had instant vertigo (means a normal result), but my right ear took many tries to get the spins going. I thought that was strange that my bad ear gave a strong response vs. my good ear!
Hi Debbie thank you so much for your reply you make a lot of sense!!!! Thank you its also very reassuring to know.
I wonder how many of us there are!! ☺
I have heard that about herpes and antivirals. But I'm not sure where from. Thank you so much for your reply ☺😊
My letter told me to stop all medication a week before. Odd they didn't say that to you. Perhaps they don't want to be responsible for you feeling worse, as I'm starting to. It is odd about your ear too. I don't know anything about it could they have previously made a mistake. ....am I understanding this right the do something with hot or cold air and it makes the room spin if your ears are working if not there's damage? I had not idea they did that it sounds quite unpleasant. But I suppose if it gets sone answers ( hopefully) then it will be worth it.
Yes, you are understanding correctly. I researched the tests quite extensively beforehand, and had myself worked up into a tizzy about the caloric test. If your vestibular system on that side is intact and undamaged, you will get the spins (and nystagmus). I was so, so worried about getting dizzy, but it was really for nothing. It was not unpleasant. It felt to me exactly like being on a merry go round- it wasn't my normal dizzy feeling. And it only lasts for a few seconds. I understand medical students do this to each other for fun or something.. Don't worry about it. About the meds, they said they wanted to see me in "my normal state", so not to discontinue. Even though the handout they gave me said to discontinue for 5 days. Oh well...