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Vestibular Neuritis- any recovery stories?

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cally_44573
cally_44573

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

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  • ash82
    ash82 cally_44573

    Posted

    I have been searching the net for answers and can across all your posts and this is exactly how I feel.

    Please bare with my story as I have some question I would really appreciate if anyone has answers.

    I'm 35 My symptoms began during a viral infection I received. Back in Feb. I like the trampoline elegy but the only way I could previously describe it is an Off balance feeling , nausea, headaches, brain fog, fatigue & tension in the neck / shoulders.

    After a month or so I started to get slight anxiety episodes. My mental health had always been excellent before this.

    But how could you not when you feel like your seriously ill all the time and doctors keep telling you it's a viral infection.

    I have been trying to manage still going to work which is tough as I work away and fly in and out of work.

    I have found a physio that has been a god send and managed to work for 4 days straight for the first time after seeing her twice.

    After seeing her a couple more times I then went back to work for 9 days. I saw a physio at work twice but he was unable to give me the same treatment as my original physio. Day 7 I fell to bits. I ended up flying home early and saw my physio 3 days in a week. But haven't been able to get relief like I have had before.

    After eventually getting an appointment I have seen a neurologist just over a week ago. All MRI , CT and Doppler scans were normal, My VORs were abnormal. The neuro's diagnosis was peripheral vestibulopathy rooted by the viral infection causing inflammation of the vestibular apparatus and or vestibular nerve. So basically an educated guess ??

    He has prescribed magnesium to be taken twice a day.

    He did say the neck and shoulder tension was the body's way to try to potted itself and to keep having phsio as it will help with recovery.

    I went back to work 2 days ago, I went to bed early after work as I had just flown in and was tireder than normal. I woke an hour earlier than normal and couldn't sleep so decided to go for a walk. I don't know how to describe it but I felt different. Went to eat breakfast and didn't feel hungry forced my self to eat toast which tasted to me like cardboard. I went to work that morning and felt absolutely terrible. With all the normal symptoms intensifying. Emotionally felt lower than normal. My whole headspace & brain fog felt like something had changed. It's the only way I can put it. Later that evening my taste buds and some appetite did come back. But other symptoms are still the same.

    My doctor was away so I went to a different doctor this morning. She wouldn't listen to me and tried to cut every conversation short then proceeded to say I was agitated. Well no kidding!!! Your a rude b*** .Anyway she has said I have anxiety and has given me a script for it.

    I don't know if I agree with this or not. Think I'll get a second opinion.

    Ok my questions

    Has anyone experienced anything like this. Going to sleep and waking up feeling in a totally different headspace. The brain fog is worse My eyes are tired and puffy I feel like I've had very little sleep. I slept 8 hours!

    I understand the brain is coping with the change and working to correct it. So there's a lot going on. But to go to sleep then wake up feeling different. I look at this and it sounds crazy but different is the only way I can describe it.

    Is this normal?

    Also I had been given some medication to help with the vertigo as the doctors keep calling it. It made me feel strange so I didn't take it again.

    Has anyone had any luck with this type of medication. Does it kill all the symptoms? The things that really effect me are the fatigue and brain fog. The rest I can learn to deal with.

    I have always been a firm believe to treat the cause rather than the symptoms but I'm at the stage now where I will try anything.

    Thanks all for reading. Hope you have a speedy recovery.

    Ash

    • jasmine13533
      jasmine13533 ash82

      Posted

      Hi Ash,

      You and I are really similar.  I was 35 when I literally went down at work and had to be taken to the hospital in an ambulence because no one know what was happening - I had all the tests, everything was negative and after a few days managed to go to my family doctor partly because the pain in my ear was so bad.  So, yes, it was a viral infection for me, too.

      I stayed home for about 6 weeks, but started working from home after 2 (even though I could stand up for more than a minute or two at that point).  I can't even imagine going on a plane at that point - it took me about 18 months before I did that. 

      I think it's important to distinguish the syptoms from your damaged nerve and possible symptoms from anxiety.  It took me a while to do that.  Anxiety messed with my appetite and sleep, and exhausted me even when I did slept, which just made the weird detached / vertigo symptoms worse.  I was so frustrated because my mind is usually so quick and I was forgetting words and it was taking me forever to write a simple email. 

      Physio helped a lot - even when she just did tension release and not exercises but it definitely takes time and depends on how bad your symptoms are.  

      I'm by no means a doctor, but from what I understood from my condition is that the damage to the nerve is permanent so there is only treating the symptoms.  The dizziness meds didn't work for me, the only thing I took was anti nausea meds (Gravol here in Canada) because I was getting motion sick all the time.  But my pysio also told me that anything that supresses the diziness also stops your brain from compensating.  She also told me that anzxety is a really common side effect especially for people like me who are "high functioning" and never had any limitations before.  Not being able to do the things which came easily to you definitely has a huge impact on your mental health!

      I know hindsight is 20/20, and it's almost been 3 years since I first got sick, so all I can offer for advice is that it does get better but it does get better slowly and being patient / adapting is not easy.  But the fog will life and you will feel like yourself again.  I was told to look at improvements year over year rather month over month.

      The one thing I do regret is forcing myself to get back to "normal" to soon and too much.  Working full days and more at a high stress job made me feel proud that I could push through despite feeling terrible, but now I realise that I probably could have gotten better faster if I just focussed on getting better.  I was so exhausted all the time all I did was go to work and every evening and weekend I was like a zombie.  But I know you have to do what's best for you.

      So, I totally understand your frustration!  If there's anything else I can try and answer let me know.  I did feel like I lost 2 years of my life BUT now that I'm totally feeling myself again (except for going to down stairs and when the weather pressure changes), it's definitely helping me not take simple things like being able to roll over in my sleep for granted...Just know it'll get better.

      Best of luck and I hope the fog clears soon,

      Jasmine

    • laura51775
      laura51775 jasmine13533

      Posted

      Hi Jasmine,

      Just wanted to say thanks for going out of your way to post such incredibly helpful answers. They bring me a lot hope. I'm 9 months into VN and VM. Some days are harder than others, but hearing about your recovery helps.

      L

    • josh30539
      josh30539 laura51775

      Posted

      Hello, just wanted to give give a little support as well. I've been dealing with VN for 18 months now and do want to say it takes time. My first year was hell. I couldn't work or drive let alone be in a car for more than 5 minutes, it wasn't until about a year I was fed up with staying at home not doing anything that I started doing VRT and slowly being more active. Going to store around the corner, walking for 10 minutes riding in a car as long as I can without pushing it. Eventually I got to the point where my dizziness wasn't as intense where I can do more for longer amounts of time. I just started working again which has been about 5 weeks now and does feel hard at times but I try to push through without over exerting myself. I feel like I still have long way to go but the best part is I'm able to do a lot more now. So it does take time and patience but does get better. Just try little things to push your body. You will get through this

    • jasmine13533
      jasmine13533 laura51775

      Posted

      Hi Laura,

      If what I went through can help others I'm happy to do what I can!  Hang in there.  9 months seems like an eternity, but try and think of how much better you were than nine months ago and how much better you'll be 9 months from now smile

      Jasmine

    • laura51775
      laura51775 josh30539

      Posted

      Hi Josh,

      Thanks so much for that. Really needed to hear that. So many Drs and practitioners seem to be ignorant about the duration it takes for some people, so your post makes me feel normal or like I'm on the right path. Your description is so accurate. What is actually the hardest for me right now is depression setting it. It's hard when you can't do things like exercise that actually help depression. I'm already on an SSRI but not quite cutting it. Did you struggle with mood?

      So glad to hear your story and that you are doing well now!!

    • josh30539
      josh30539 laura51775

      Posted

      Hi Laura,

      Sorry for the late response. I did struggle with mood pretty bad. I was always active at the time, not just in the sense of exercise, but i use to always go to concerts and visit family and friends and take occional trips to L.A. or Vegas so not even being able to see some of my favorite bands that were near me or travel always got me down. I couldn't attend some friends or families birthday parties. I couldn't see my cousin get married so I was down for a long time. But i did have great support at home which helped get me to where i am now and always remembered i am better now then i was December of 2015.

    • ash82
      ash82 jasmine13533

      Posted

      Hi Jasmine.

      Sorry for the late reply. It's been a tough 2 weeks.

      Thanks so much for your reply.

      Very similar situations.

      I ended up figuring out what set my symptoms to extreme. I had physio treatment at my work the day before. My usual physio had given him instructions on what treatment she was doing. At the time my work physio was really apprehensive and I actually asked to him to stop as I felt he didn't know what he was doing and it felt really weird. Shooting pains ect.

      When I spoke to my usual physio she believes what he did was like opening Pandora's box. So after 4 physio sessions and a week later I am back how I was feeling before seeing the work physio. Anxiety is still more than before but it's eased a lot and is self manageable.

      Definitely learnt my lesson there.

    • ash82
      ash82

      Posted

      I know I am only 5 months in but I would like to share a few things that I have found that really helps me. With not only the symptoms but also mental wellbeing.

      My physio: I went to acupuncture , Bowen therapy , remedial massage, even a different physio. Some helped more than others but nothing really stuck.

      I was recommended to go to my current physio just by chance. (It was only because my acupuncturist said to get my inner ear checks and recommended her). She has been an absolute god send. I noticed the improvment the first time I got treatment with her. Don't get me wrong. She hasn't magaically healed me but she helps ease the symptoms a lot. Try different physios until you get one that can treat you. They all talk the talk but proof is in the results.

      The other thing I would highly recommend. Is going for a walk every day. Most days I really can't be bothered i a feel like absolute crap but I have made myself and I have noticed an improvement in the way I feel. Mentally and physically.

    • ash82
      ash82 jasmine13533

      Posted

      Hi Jasmine.

      I forgot to write a question i had and have just noticed you can't edit your response.

      I would classify myself as high functioning. I also have a high functioning job. I guess that's what's so frustrating as at times when the symptoms are at their worst it is hard to concentrate & I don't feel very high functioning at all. Hahaha

      Did you find that the fatigue was only due to your anxiety? Or did you think both were the cause. The thing with my symptoms is I don't actually feel Anxious anymore but still get anxiety symptoms which make it very difficult to determine what symptoms are stemming from what.

      Thanks again for your response.

    • laura51775
      laura51775 josh30539

      Posted

      Thanks Josh! Yes, not being and to travel or socialize properly and actually enjoy things is a bummer. My focus right now is trying to find some little joy in things despite feeling like crap all time. But ya, time and patience is key. Take care.
    • josh30539
      josh30539 laura51775

      Posted

      Yes anything helps. Reading, listening to music, walking, having friends over. For me that's what started keeping my mind positive. Im here to help if you or anyone else have any other questions.

    • jasmine13533
      jasmine13533 ash82

      Posted

      Hi Ash,

      I can so identify with what you're going through.  I was SO frustrated.  I was so used to firing off emails on complicated topics like it was nothing, and all of a sudden I was struggling to form sentences - and worse - making basic spelling errors...I would laugh when my doctors / physio would call me high functioning.  I just thought I was being a "normal" person.  I guess it one more of tha many things I've learned going through this...

      I would say that the VN left me more exhausted than the anxiety - depending on the day.  The way my physio explained it to me helped immensely in me understanding why.  Because your brain is literally trying to figure out which was is up and is getting constant mixed signals, it's in a constant state of feeling threatened, and therefore a constant state of fight or flight (which is the same thing that happens with anxiety).  She said it was like your brain was seeing a tiger in front of you ALL the time - so it's freaking out about the tiger and kicks in all your defense mechanisms to figure out what to do.  Because the damage to my vestibular system is permanent, the point of the physio isn't to make the tiger go away - it'll never go away - but to have your brain no longer be threatened by the tiger.  It no longer interprets the mixed signals as a threat and therefore remains more calm.  Because it's this constant state of high alert which exhausts you. Again, same as anxiety. I had no idea that your brain working overtime all the time could be so pysically exhausting.  And that's also why, if you're like me, you forget words and start misspelling things because your brain is exhausted. When I first got VN I wasn't anxious at all either - I actually only got really bad anxiety about a year later when I was a bit better.  So initially, all my exhaustion was VN based. 

      It's so, so hard to have this stupid nerve in your ear control your life. It sounds like you're doing everything you can, and I know patience is hard, but it pays off.  And I definitely don't take being able to shoot off emails for granted anymore...

      Hang in there and let me know if you have any other questions!

      Jasmine

    • muhammad62667
      muhammad62667 jasmine13533

      Posted

      hi jasmine13533

      pls tell me.do u still have vn?how did u manage to treat it?did it go away?

    • laura51775
      laura51775 josh30539

      Posted

      Hey Josh/Jasmine,

      Hope you're both well! Wanted ask did you have a problem with exertion? And/or how did you get back to any exercise? I feel about 60% better but still could not exercise. Possibly gentle yoga on the horizon. Just wondering if this is normal? Exertion seems to exacerbate all symptoms.

    • josh30539
      josh30539 laura51775

      Posted

      For sure exertion does amplify the symptoms. I havnt been able to exercise fully yet just light walking and exercise bike. My work is pretty physical so I do get a workout of sorts from that and I do feel slight exhaustion and fatigue. Short answer yes, but your body will get used to it over time.
    • laura51775
      laura51775 josh30539

      Posted

      Ok, thank you! Can I ask what kind of work it is? How long were you off for? I'll have to get back into 8 hours a day on the computer eventually rolleyes

      Also wanted to ask if you got 'fog'/derealization with yours? (Was yours VN?) Mine has been here the whole time and feel like it will be the last thing to lift. It's just the worst hah.

    • josh30539
      josh30539 laura51775

      Posted

      I work in office facilities. Prior to that I was a lab assistant at a semiconductor company. I was off for a year and three months. I could have gone back sooner if the doctors knew what was wrong. I did have brain fog at first. It wasn't until I started getting more active like going to the store walking to the park when it started to go away. And I agree with you it was bad.

    • josh30539
      josh30539 laura51775

      Posted

      Anytime. if u have any other questions concerns don't hesitate to ask. Stay strong

    • jasmine13533
      jasmine13533 laura51775

      Posted

      Hi Laura,

      Yes exertion made it worse so I just stuck to walking (my PT also suggested the stationary bike and told me to avoid the treadmill). I know this sounds counterintuitive but I found swimming really helped - maybe because half floating means you brain doesn't have to work at balancing so much?? I didn't have enough balance to do regular yoga and downward dog still terrifies me, but I've practiced yin yoga steadily and I think it really helped - gentle, helps with anxiety and just the tiniest bit of balance which was enough to challenge my brain without being disasterous.

      I worked in labour relations at the time so at a computer but demanding mentally. I went back to work after 2 months which was way too soon but oh well...

      Good luck! Hang it there...once you're over the worst of it which it sounds like you are, you'll be able to do more and more - probably without realizing it smile

    • laura51775
      laura51775 jasmine13533

      Posted

      Interesting that you mention the treadmill. I was back at work after 3 months, (and although I probably shouldn't have been I was functioning pretty well) when a physio did a full on cardio test on me on a treadmill. It trigger a MASSIVE set back. Couldnt get out of bed for 3 months and took me 6 months to get back to where I was. Super traumatizing and have a lot of anxiety around exercise, so yes, no treadmills!! Hah. But thank you, getting ready for a bit of yin and gentle hatha.

    • kim34950
      kim34950 josh30539

      Posted

      HI Josh, how are you doing these days. I got this over a few months ago and started vrt a few weeks ago. Some improvement. I get body aches after working out too much. It doesnt really make me all the dizzy though, i actually feel better and more balanced when I leave vrt. Ill have a new trainer next week who has knowledge on VN. Im still on medical leave at work, not sure i can work until i feel better than this. Do you have any suggesstions, any meds that work best and that you can take during the day? Please let me know...
    • josh30539
      josh30539 kim34950

      Posted

      Hi Kim, I'm doing the best I can. that's good the VRT is helping. If you feel you need more time before going back to work you should take the time. No need to rush back. I kinda wish I did but work seems to help me more. As for meds sorry i dont have any suggestions for that. I was taking sertraline and before that nortriptyline which both didn't seem to do anything so I told my doctor I want off meds. That's when I decided to push myself a little and get more active. I do take Vitamin B12, D, and Magnesium.

    • kim34950
      kim34950 josh30539

      Posted

      HI thanks for your response. Are you on the facebook group for vestibular support? If so, please write me on there. May i ask how old you are? Im 42 and live in Florida. What kind of work do you do?
    • josh30539
      josh30539 kim34950

      Posted

      I'm in a group called life is full of hurdles. Not sure if it's the one youre in bit if you give me the name of the one you are in I'll join. I'm 28, live in California and work in Office facilities

    • kim34950
      kim34950 josh30539

      Posted

      yes i joined a few others including that one. Im in vestibular disorders support group and vesitublar hope. Im posting now in vestibular disorders if you want to add me as a friend on there...I keep in touch with some people and speak to them over the phone sometimes too. Its nice to meet others who have this as its easy to relate to whats going on. 
    • laura51775
      laura51775 josh30539

      Posted

      Hi again Josh/Jasmine,

      Me again smile Wanted to ask - did you find your recovery not super linear? 2 steps forward 1 back? I get these bouts of bad days that seem to last 3-5 days, and then go back to better days. These spikes are getting less intense but keep coming and usually can't find a specific trigger. Just curious about your good and bad days while you were recovering and if this is normal. Everytime I'm having better days I remind myself that I'm probably not out out the clear, and trying to ride out the waves with a little more ease. But its hard, itslike you keep getting thrown back in prison.

    • josh30539
      josh30539 laura51775

      Posted

      Hi Laura,

      Welcome back cheesygrin. That is exactly how my recovery is going. I will at times feel a lot better, then out of nowhere I'll get set back a little bit. Just this past week thats how I felt, although I might have had a bug or something because mainly my stomach was feeling unsettled, but my symtpoms did become a little stronger. And yes it is less and less intense over time. Yes it's hard because its like hey im doing better why am i going back now. but then after sucking it up and dealing with it i know im getting better.

    • jasmine13533
      jasmine13533 laura51775

      Posted

      Hi Laura!

      Definitely the same as you and Josh. I'm never as bad as I first was and am down to only a bad day once in a while but when it happens, it happens... I've also tried to figure out my triggers and think it's pressure changes in the weather, stress, and if I'm tired...I'm sure there are other things but definitely those ones. It is a permanent condition and sometimes your brain just can't handle it anymore? But that's exactly how I think too, unlike when I first got it I know it's temporary and it's a sign I should take it easy and try and reassure myself the best I can!

    • laura51775
      laura51775 josh30539

      Posted

      Ha thank you both. Good to know.

      Yes, I have been having what feels like is a stomach bug on and off this whOle time so often wonder if that's where the original virus is/was.

      Hope you're feeling better Josh.

    • laura51775
      laura51775 josh30539

      Posted

      Hi Josh and Jasmine,

      Hope you are well these days! Did you ever concider trying ami or nortrytaline? And did you think you may had also developed VM?

      Laura 

    • josh30539
      josh30539 laura51775

      Posted

      Hi Laura,

      Hope you are well these days too. From last we talked I had gotten better stomach wise. The swaying/dizzy feeling has been less intense these past few days which makes me happy. I was on nortriptyline for a few months but decided to get off them as i felt like i wasn't improving and i feel that i might not have to try it again or another type of med unless i get a huge setback. I'm not sure if i developed VM, but I am thinking that is the case. I am scheduled to have a VNG later this month so hopefully around that time i'll be closer to having an actual diagnosis. How have you been as of late?

      Regards,

      Josh

    • laura51775
      laura51775 josh30539

      Posted

      Thanks Josh! Good to hear you are doing better! I don't really know either, think VM might have also developed, might try nortryptaline. Started a gradual return to work today which I don't feel ready for but we'll how it goes I guess smile

    • jasmine13533
      jasmine13533 laura51775

      Posted

      Hi Laura,

      Hope your are feeling better and going back to work isn't too exhausting. Just remember to take breaks!

      I didn't take any meds besides gravol/Dramamine. I definitely think I developed VMs - they usually pop up with weather changes and if I'm particularly tired / stressed. I manage them with Advil, gravol, and, honestly, basil oil on my temples and back of my neck (that seems to be the best for releasing some tension?!?). Or sometimes I just try and sleep if I can... They usually get worse in spring / fall but I guess we'll see how this year goes...

      Hang in there...hope you're feeling better. 

    • josh30539
      josh30539 laura51775

      Posted

      Glad your getting back to work. If you do try nortriptyline, hope it helps. And let us know how work goes.
    • nikki1978
      nikki1978 josh30539

      Posted

      Hi Josh,

      ?My name is Nicole.  I have been having problems with dizziness and vestibular neuritis, which my neuro-otologist feels is vestibular hyposensitivity brought on from silent migraines.  Anyways, I have this one symptoms that is a real bother for me and it's very frustration, it's I believe what's called derealization, where all of a sudden everything seems to look funny, cloudy like, it feels like you're in a dream and not really there.  Do you get this too?  I was told it was part of migraine, I was also told it was anxiety and I was also told it was the space and motion distortion.  I have no idea and it's so frustrating, along with the other symptoms.  I have also noticed that I've become somewhat claustrophobic, which I was never before.  Do you get that too?

      ?Sorry for so many questions.  I hope things go well.  Let us know how your VNG goes.

      ?Take care,

      Nicole

    • josh30539
      josh30539 nikki1978

      Posted

      Hi Nicole,

      Derealization was something I had struggled with for the longest time and at times still do if I don't get enough sleep or am sick. for me its basically like you said it felt like dreaming. and no matter how hard i tried, my eyes couldn't focus on anything. I felt like the more I did to be more active, it would eventually go away. I did develop anxiety from this as well, which I never had. Claustropobia for me I pretty much always had since I was little so for me there's no avoiding that but did not get worse since. 

      And don't worry, i'll try to answer your questions as best I can and if you have more don't hesitate to ask. 

      Regards,

      Josh

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