Hi all, I will try to be short. 8 months ago I got struck by typical syndroms of Vestibular Neuritis (I didnt know then what it was and never heard of it so I panicked a bit). Typical smyptoms (dizzines, lightheaded, sleepy, wanted to vomit, problems in abdominal part etc). Only first day I experienced 2 short and strong vertigos. First few weeks were like hell as you all can imagine (some of you also get through this). On top of that I was going on summer holiday in that state as I didnt want to spoil the vacation for my kids and wife. Hell on earth tbh. Only after 4 months I "fully recovered" (smyptoms were weaker, gradually as time passed away). Last few months the situation is much much better, I still have (from time to time, let say every 2 or 3 weeks) vsymptoms but that is in really small "doses". Almost that I barely feel that...
What is VERY IMPORTANT to know for all the NEW PATIENTS. This thing is not a super serious illness. You wont die from it. It WONT last forever in 95% of cases (note: the older you got struck the less chance there is). So all you need is to prevail and to be strong (mostly in your head since the illness is influencing our brain, our mental state). The center of it is an inflamed inner ear which is responsible for our cener of gravity..this is why the symptoms are awful....So dont worry you will be getting better. Worst part for me is that my doctor told me the smymptoms usually last not longer than few weeks which ofcourse isnt true at all. For most ppl it can last much longer. This I learned on the net reading articles from doctors who are experts in VN.
If you want you can tell me your experience, ofcourse..
All the best and hold on..
Hi...thanks for this post. It's given me hope. 5 weeks ago I had 3 short spins in a day. Straight to Drs who said BPPV. 2 weeks later went back to Drs who said as I'd had no other spins it's not classic BPPV so now have to go to ENT (and have an MRI just to rule out anything else other than ear). I now just have a sort of whoosh feeling in my head and just generally feel of kilter, like I'm wobbling or my head is wobbling. I also sleep well now lol. I've been so worried about this as a single parent of 3 with no support network. Anxiety hasn't helped and I don't walk as far as I used to (having to rely on son to drive me to work). I really hope I improve soon.
I have been recently been told by the neurologist that I have damage to the vestibular nerve. Therapy to help live with it so I don't feel the effects It can improve on it's own
but no time limit for it to occur. I am not able to drive because I never know when
the dizziness will get worse. What a horrble thing to have
You're very lucky, I have had it for 7 years.. some people,have it shorter, some even longer than me. Too many variables to generalise i'm afraid.
I have vn too and did caloric testing which showed 24% damage. I'm on month 10 and 95% better but struggle with anxiety now and like u I also have a few blips with issues but they are short lived.
Mine started in April last year, woke up to the room spinning around me. Felt really dizzy for a good three months. 9 weeks into it I got tinnitus which is still there all the time. I struggled in busy stores but push myself to just do it. Did you do any vrt?
Thanks for your post, Tvrdi.
i'm into week 6 and not enjoying it much at all. I'm in my 50s and so I expect the recovery will take longer. I work in a busy medical clinic and dealing with the dizziness - worse by mid afternoon - can be challenging. I walk every evening and do vestibular exercises to try and retrain my brain. I even have a practice balance beam! It really takes a lot of determination and patience (don't always have enough of that). I also get anxious at times. Anyway, I am still surviving and continuing to push through it. I think the hardest thing is knowing when you should just rest. My mantra right now is that if it makes you dizzy, repeat 5 times. Haha.
Thanks again for your positive post.
Best,
linda
What a great message to help people who think they will never get better with this. I had the same experience as you. I have had 3 epeoisode over the past 4 years and I alwasy got better and symptom free.
I didnt get VRT...I also experienced tinnitus at the later stage of VN though it is more common with labyrinthitis...but that got away...
That is really strange as usually VN is one time experience, in its full strenght, ofcourse. But experiences are very different. I have a friend who had stronger symptoms than I did but he recovered after just 4 weeks...
btw folks sry for my english, its not my native language
I forgot to add that some exercises can be found on the net. Im not sure if they help and didnt do them. Our brain is "good enough" to compensate for the "loss of information" after the inflammation of the nerve of the inner ear which is responsible for our balance. But the brain needs time and the recovery depends of the damage done.
Yeah i didn't do vrt either. They don't know what caused my tinnitus but it still hasn't left
Sorry Melody,
just read your earlier posts. Sounds like you are doing all right for the most part. That's good!
I seem to struggle with visual issues now but it's not dizziness or anything my eye sight just feels so strange. I have also started a low dose anti depressant as I know anxiety can mimic symptoms
Look up Vestibulopathy with visual Preference. I also take anti d's now. Was against for long tome, but really help anxiety stuff.
Is there anything I can do to help that? Ent seems to be sick of me lol. I also was against them but hoping it helps as I have a lot of stress related issues now like tmj
I loved your post! I have been on my journey for 4 weeks and counting. Lost my job. I got really light headed at work one day and I have never been the same. I don't have or never have had spinning room feeling. Mine is a weird visual thing. Worse when moving my head left to right or up and down. Reading a book is definitely out of the question. When people are around me I can't keep up with the conversations. I do not go to restraints or stores because that is awful as well. A friend of mine is a balance PT and has told me what I have VESTIBULAR NEURITIS. She gave me some eye exercises but idk they make me feel worse. Headache nausea etc.... I feel like I am in a different world 24/7 from the time my feet hit the floor until I go to bed. I just stare out the window at everyone living their lives without me.
Melanie.....why have you lost your job after only 4 weeks? That's not right, you have rights over sick pay etc surely! I'm in week 14 of VN but there is progress it just takes time. Some people do get over it in a few weeks but I think for the most it's longer. VN is caused by a virus that has attacked the inner ear (I don't even know when I had the virus as i wasn't ill at anytime). It depends how much damage has been left to recovery. I managed to keep working in an office part time but it was hell for the first 8-9 weeks, so was shopping in supermarkets etc and walking in open spaces but I've made myself do these things despite being uncomfortable. I still have daily symptoms, still don't walk to work like I used to as it's 2.5 Mile but I'd say I've gone from 40 percent when it first hit to 70 percent in terms of improvement maybe. Im waiting for a call back from my GP (can't get an appointment to see him, all taken for this month) to refer me to a Neurologist to see what they say as I've had no tests yet other than a hearing test with ENT but i suppose that this will probably be a four month wait for appointment 😡. It's an emotionally draining illness and frustrating (I have kids to look after and no support) so I understand how you feel x
Hi Julie! Well to clarify I guess I haven't lost my job entirely. I managed a store (30 hours a week) but now I find it impossible to do. I didn't realize how much thinking and physical my job was until this. So I am just considering I have lost my job because of the length of some of these recovery stories. I am having so much trouble with the simple things. I have headaches daily that radiate all over. Also something's up with my neck on top of all the dizzies. I guess I'm in that stage where I'm like something else is wrong. A friend of mine said she is sure I have VN. She specializes in rehab therapy for this. ( do you do any rehab?) they make me so much worse I feel like. I truly envy you for continuing work and also having children to keep up with. One of my kids is in college and the other is 10. I think one of the hardest parts for me is everyone asking me everyday or so if I'm better. Ummmmm ya I wish. To everyone else I look great!!! So I'm sure some may think I'm putting on a little. Is your dizzies all day? I read where some only have episodes. I wish. Mine is constant not room spinning but when I turn my head it's like the whole world is going frame by frame in slow mo. My legs are also weak ( I used to go to the gym 3x week) not anymore. Yes drs can be so frustrating you wait to get in then it's like you are no better off then when you went. Went to my first GP twice and he sent me for sleep study and eye doc . Blood work good. Eyedoc good. Didn't go for the sleep study because it is an hour drive away. So I will not be seeing him anymore Ive got a appointment Friday with a different GP so more blood work all the same stuff I'm sure. Have you had any diagnose yet?
Sorry I re-read your post and I see that you have been diagnosed with VN. Have you read some of the posts of people saying 2 years or even 4 years and still going. Wow I wouldn't be alive by then just because I have no appetite anymore dizzy and food don't mix. I have lost 10 pounds in one month. That's why sometimes I think it's not VN who knows? My husband is really into drag racing it's his life. Every year we go for 3 days to an all day racing event 3 hours away we book hotel and tickets 6 months in advance. It will be in august. Even at 100 percent it was tough all the walking and the heat and we are at the track for two days. Noise all the time. It is so fun but thinking I won't be able to go and my husband will be secretly mad at me and probably go anyway and then I will be sad at home. I have still got 3 months. What do you think?