Vestibular Neuritis 8 months later report and heads up post

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?

Hi Hun....well first day (I had 3 short spins) got into Drs and he said BPPV which is the crystals getting loose in the ear. Went back 2 weeks later in tears and he said he didn't know as no more spinning Vertigo, so he did an MRI referral and ENT referral. These appointments were then a 6 week wait. In the meantime I self diagnosed Vestibular Neuritis. Finally went to ENT who said I might be right but needed MRI result first. Anyway MRI was clear. ENT wrote to my GP and said as long as MRI showed nothing else it was probably Vestibular Neuritis. So GP and ENT agreed with my self diagnosis lol. I'm now going to ask GP for Neurology referral but that can be a 4 month wait 😩.

I am much better now than what I was in weeks 1-9. It was bloody hard going though. Symptoms: head whooshes where it feels like inside my head is constantly moving (subsided now but still there just not as constant), difficulty around shops due to too much visual stimuli and constant dizziness (not spinning Vertigo) plus feeling off kilter when walking. To reiterate now in week 14 or 15 there's much improvement but I'm still aware of issues just in a much milder form. I find symptoms worsen again during lead up to period but only for a day or two. Some people recover quickly, some take months, a few will take years 😩. It's all to do with a virus which I didn't know I had getting into the inner ear, so it depends on how much nerve damage I think as to speed of recovery. The more you force yourself to do, the quicker the brain learns to compensate. I've not been given exercises but feel my daily life is enough what with work (part time in an office) and dealing with kids etc...I'm a single mum with no support network, however oldest is 19 and drives me to work and back. It's been hell but it does slowly improve, you must keep doing things despite feeling awful. It will get better over time but keep active 😀 X

Melanie...you need to push for an MRI to rule out anything Central like MS, tumor etc (most people with these conditions will have had one and the majority come back clear). It's a process of ruling things out. X

Try not to panic (easier said than done) and stay off the big fb support groups for these conditions...trust me they will scare you...don't do it because I did). 3 months is a long time away so you may have recovered fully. If you have residual symptoms or still minor symptoms you may find that sort of environment hard going. Your husband will just have to understand you have a condition! Any condition is classed as Chronic when you hit the 3 month mark (it just means long term). I remember my boss saying "it's weird, you don't look ill" My reply was "I'm ill enough for an MRI referral"....he has shut up now 😂😂. It's an invisible illness so yes it's frustrating that people truly don't get how you feel. Honestly I've shed so many tears over this and having anxiety hasn't helped. But I have to think back to how I was in the first 2 months to how I am now. I'm not fixed, I can't walk as far as I used to (I can drive but don't, due to anxiety) so that's a bummer and if I do too much I know about it, so I'm more restricted and have to think 'can I do this, or go there, how will I be? But this won't beat me...it can't for my kids sake...I still worry though x

TO be honest Melanie you really need,to see a specialst, as GP's,dont know this stuff whatever country you are in. I'm in UK.  The best person to see is. Neuro Otologist. After going the GP, ENT,(Twice) route, plus Audiologist, Neurologist, i learned this!  A Regular. neurologist mainly deals with the Brain, not Vestibular system which is what causes your symptoms. Imhave the same, 'drag' when you move yr head, noise sensitivity (Do,you have tinnitus, ear ringing?), flashing lights.  All this is basically got the VS system isnt n Sync with the brain, eyes,and ears and all these other senses are 'trying' to,compensate, so the. BRain ends up,with 'mixed messages'.

yes also know  about  ppl,saying you look,fine, and i'm in my,late 60's fgs. Its what they call an 'Invisible illness'. You should,go i to the Vestibular Disirders Association (Veda)? They have a lot of info and you can print  things out to show your husband for eg so he 'gets' what this whole thing does to you!

Ooh Gillian I'm uk. Diagnosed with VN left ear. Ive recently been getting Tinnitus every now and again in my right ear though. It's not constant, had one 5 minute bout today, nothing yesterday! It must be connected somehow? I'm a bit worried now. Waiting for a GP call back as I couldn't get an appointment this month fgs 😩

How ridiculous you cant get an appont't for whole of May? Where do you live?

yes timnitus is often involved, but not the cause. Just another symptom. When you get the call back,just say you want,to be referred,to a consultant that deals with Vestibular Vertigo. that you've researched  and a Nuero Otologist is advised.!

No Gillian I don't have ear ringing thank goodness. I am sensitive to sounds phones bells etc.... my biggest problem right now is the head pressure and nausea. I started taking a multivitamin. my energy level is zero. I am trying to move around today and 2 hours of working and I'm done I feel awful like flu like and I just want to lay down. I wonder if I have to be referred to a nerotologist? Or can I just call one? That would probably save some steps.

Julie, are you still unable to drive? I do drive short distance no more than 8 miles. I hate it but sometimes I have to. On the onset I went to the ER because I thought I was dying. They did a CT of my head and said no bleeding no tumor. They said I have BPPV but I made a appointment with a ENT and he told me he doesn't deal with vestibular issues ( great)! But he did tell me I don't have BPPV because this cause this is mostly positional laying down etc..,,, wish it was BPPV that way the eply would help me.

I'm in Lichfield, Staffs. I expect I could have got a different GP at the surgery but I want the same one I started this hell with, not flit between Drs 😡

I was like that for a long time, but when i was investigating other poss reasons for this problem, i saw an Holitistic dr who deals with thyroid probs as that can induce dizziness,to.  He got me onto a regimen of supplements a my energy was zero like ,you. I just wanted to sleep (Plus lying still helped the dizzy stuff). You meed,to up,your Vit C, B12, Magneium (V.important one, most ppl are,low,on this and dont even know it),  

Vit D, another definite, but get the liquid one which absorbs.  SAme goes for B's .Multi vitamins are pretty useless..Co Enzyme Q10 for energy deffo!! I take a good Omega oil capsule, and Zinc. 

The only way you can get to see a Neuro Otol. Without a GP referral first is privately. But as you are in the US? Not sure how that works,over there.

Ooh don't be wishing it was BPPV, there are many people who really can't get rid of it and that's spinning Vertigo. It also has a really high reoccurance rate 😩

Just strange that the occasional Tinnitus is in my good ear, I'm totally lost in that one. No call back from the GP today 😡 I don't even know if we have a Neuro Ontologist in our surrounding hospitals. I can't travel far as I don't drive due to anxiety.

Your right Julie. I don't want BPPV either. I know what you mean about the anxiety. I have it all the time. Makes me feel like I'm having heart problems. That's what made me visit the emergency with dizzies and chest tightness trouble breathing all that good stuff. I heard that there is a anxiety med that helps a lot of people get through this. Are you on anything like that? Mabe bring it up to the doc. It's only as needed so you could take it only when nessesary that way it doesn't slow down your compensation . I believe the name was Ativan.

I am also hating to switch docs. The one I see this Friday is a new one so I will have to go through the blood work and all the same stuff all over again ughhh. My other doc just wasn't helping me any. Two visits and all I got was eye doc appointment (20/20 vision by the way). And a sleep study which I am not participating in. I sleep just fine it's staying awake dealing with life that's the problem 😂

Melanie that question is on my list to ask the GP about a med I can take as and when needed. I've tried the antidepressant way a couple of yrs ago and lasted 6 days due to the side effects 😂 hell I felt worse and had to work, look after kids etc so that was it I stopped taking them. I've heard of propoponal or something like that, I've heard of the one you have mentioned too. I don't suffer anxiety daily but once I start worrying about something my overthinking, and the what ifs spiral out of control and leave me in a mess for a few days.

I did wonder why a sleep Dr. Bloody hell the first 8 weeks I had this I slept like a log 😂😂😂. I've never had bloods taken either...I know it's my ear! You're right though day to day life is the problem 😂😂

The hospital,in Leicester is under an hour away. Can u not go by train? I dont drive either and have always travelled to my appointment s on public transport or train.

i could possibly go by train to Leicester, it's just hard with work and kids. I'm sure I've also heard that they don't take referrals from outside of the county now due to long waiting list 😩

Yes i understand.,it would mean taking a day off,work and getting help,with yr kids.  I am surprised though that you've heard they dont take referalls from out of the county as in his blog he mentions seeing people,from everywhere. It's a shame as apart from him and one in Kent, there arent any others that are much cop!

Hi. I was just wondering how you are doing? I was going through some of our posts. Are you any better? I really hope so!!!!!

Hi Melanie....I'm now 4 months on and functioning at about 75 percent now. Improvements but it's been slow with lots of tears. I'm not 'constantly' dizzy in my head anymore thankfully. In fact at home I'm mostly 90 percent ok. I drop to 75 ish when I'm at work or out and about due to movement lol. Hopefully I'll continue to improve so I can go out for longer with my kids without symptoms no matter how mild or moderate. Oh to be 100 percent again and put this hell and worry behind me. It's been hard as a single mum with no support. My anxiety has been awful, my 'what ifs' are off the scale. I'm trying so hard to stay positive. How are you doing? X

That's great to hear about 75 percent out and about. I think I am definitely improving but so slow. I'm about 40 percent. Still bouncy vision and head pressure 24/7 but has improved some. I had a MRI of the head and neck to rule anything else out and is all clear. Next step ENT. Woohoo! Anxiety is the worst. I get weird heart beats with mine. Sometimes I look at other people and get so jealous that they feel normal. I still remember my normal and want it back!!!! Did you ever have any pain in your ears at all? I can hear fine no stuffiness but I feel a pain deep in there at times. I have two months until my vacation I am still not working although I do drive not far though. I too feel more comfy at home. I have noticed that I am terrible in the dark. What about you? I can't even walk well in the dark it seems everything intensifies. I know what you mean about kids. It's so tough to try and be normal for them but we have to. It shall pass!

Every day I look at people too and wish I could feel normal like them...Im actually jealous of other peoples ears 😂 (Got to laugh at that). I sit here often thinking 'what have I done to deserve this?' I didn't even know I had a virus! I have had the odd very quick pain in my ears, no stuffiness either. I also get the odd vibration sensation in my right ear which is my bloody good ear!. It's not constant and can last from a minute to a couple of hrs maybe once a day or so. I don't think it's Tinnitus though so not sure. I've not tried walking in the dark but I can't stand on one foot with my eyes closed, i wobble all over the place (no idea how good I would have been doing it before this though lol). Spoke to my GP couple of weeks ago over the phone as I couldn't get an appointment with him and he just told me to see how I get on over the next few months!!!! Well I've managed to get an appointment on 6th June to see him. I want to know why he doesn't see the point of any other referrals! Surely I should at least see an audiologist who I assume would do some balance tests to see what percentage of damage I have? These GP's obviously don't appreciate how much this affects life or they just don't care! There can be a lot of improvement in 2 months so I hope your vacation goes well. How long have you had this for now? X

Friday was 7 weeks. Funny how you know exactly how long it has been 😂 7 weeks and 2 days. I know GP are like well you don't have a tumor you'll be ok. What about quality of life? A woman posted on patient that her 12 year old son has this and said he dissent want to live anymore. How terrible and my heart goes out to her I would hate for my child to experience this. I also know about feeling like you can't live this way I thought like that the first month but now I'm p*ssed 😡 and I will get over this😂. I got something in my eye the other day and without thinking stood up threw my head back to put drops in and nearly busted my butt!!!!!! I get the weird numb sensations like someone is touching my ear but they are not. That one freaks me out!!!!! I also get that sensation from my good ear too!! How do you know which is your bad? I'm thinking the one with pains is my bad. They sent all the time but that ear just feels odd. There was a guy on patient that said his lasted 8 months and he is 95 percent. I could handle that just as long as I knew this would be the day I get better. It's the scary stories of years that I stay away from. He also said his anxiety stayed which I'm sure is true because he is scared of it coming back I would too!!! Mabe we will be 100 by Christmas so we can do some real shopping!!!! Right now it's in and out quick as I can 😂

7 weeks and 2 days 😂 almost 2 months in. I am retyping this because I may have put a bad word in my other post so if they post it excuse the duplicate. Yes GP are like you don't have a tumor so your fine. What about quality of life?

😂😂😂

Ah well hopefully by the time you get to 4 months like me, you will be at least 70 percent ok 🍀🍀 x

Yes Julie I hope so and mabe you will be 100 . So weird I have been having this weird sensation like someone is touching my ear it's so weird . Keep in touch ok? I will also

Yes I'll keep in touch.

I'm on a small support group on fb if you are interested. Very friendly and supportive..no horror stories. It's Vestibular Disorders Support Group UK (I know youre not UK but there's a few others who aren't too) x

Julie if your GP doesnt play ball with you on 6 June, you are entitled to a second opinion. Tell him or her, that you want this,then make an appointment with a different gp,in the practice. But this time you  say 'I NEED to see an ENT. Not, can i, that you WANT to. They cant refuse! Stay way feom discussing anxiety as he'll just try to fob you off with something else. Stick to your guns, exaggerate a bit if you have to. 

I've seen ENT, he just told me everything I already knew from Google ffs! The only test I've had was the hearing test which is fine. I need an audiologist referral for the tests that show percentage of damage etc. To easy for them to say a virus and leave you to it 😡 X

Oh yes remember now. Just said ENT as a starting point for most ppl.  Well then get yr gp to refer you to Audiologist then. Dont take no for an answer!

I've literally got to demand it. I mentioned Audiologist over the phone a couple of weeks ago and he didn't feel the need...just told me to see how I get on over the next few months 😡 X

Yeah well, you can cut,to,the chase on that saying you know how,long it takes,to get an appointment and yo Cannot, cannot,,! Possibly wait until Xmas to see  professional (!) who will be able,to carry out the PROPER tests that you need! Am pretty sure they cant say no!

Exactly....I intend to go in all guns blazing. If he doesn't refer I'll find another GP! The fact is I could totally recover by the time I see an audiologist in which case I could cancel if I wanted to so someone else can have my slot! Just frustrating that he seems to think it's ok to play the wait and see game! I'm a single mum ffs who works and has no support network, dealing with this on top (I will say I'm functioning at 70 percent now 4 months in) X

Yes well dont tell hom the 70 pc bit. They'll clutch at anything they think is positive! He doesn't see you trying to cope with yr kids etc and work! Then if you play on that too much they try and and say yr anxious and need anti depressanst. So,I now stay away from saying too much in that regard. imjust play on the physical which is all they,re interested in! Bloody silly we have to,play these games, but that's the system, not like in the old,days when drs really cared!

I totally agree with you there Gillian! I'll see how it goes x

Yes u're,clued up! Fingers crossed. It,s the squeaky wheel that gets,oiled as they say !