1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Scared this will never end now! Labyrinthitis

Posted , 29 users are following.

Guest
Guest

Hi - I must say after reading all these comments I am reassured in some ways but feel like this is something which I may have on & off all my life now..

My experience started end of May 2009 - June 2009 - I was in work and started with an intense headache in the afternoon and a cotton wool feeling in my head, and a tight feeling like I had a band around my head ..I felt dizzy and nauseous. It was frightening and brought on palpitations... it went away gradually that evening but came back the following day at work. I saw my GP that day who told me it was viral labyrinthitis, I was given SERC, they didn't help really. I continued to go to work as there was a major change ahead, moving to a new team, new area, new colleagues etc... and I didn't want to miss anything or let my new team / manager down by being off sick. Silly I know.. Anyway, I had a change of medication, Prochlorperazine but little change in my condition. It lasted around 4-6 weeks and then just disappeared.

Now it has started again... I woke Monday morning (8 March) with a bad headache, told my employer I would take some tablets and go back to bed and hopefully be in work later that day. I woke just before midday and had the lightheaded, dizzy feeling, felt nauseous, my legs were heavy and my walking clumsy. I veered to the left as I walked, knocking into door frames. My head was spinning. I didn't go to work. Tuesday I felt the same, if not worse and managed to get an appointment at the GP, viral labrynthitis again and a 7 day script for prochlorperazine. I stumbled into a chest of drawers last night after having a shower and knocked everything off, I feel drunk all the time and disorientated at times. I tried to do some work at home on my laptop but my co-ordination was awful and I was continually deleting spelling mistakes. The tablets don't seem to be making any difference. My appetite isn't too good and my stomach's been a bit off. What I find interesting is that there seems to be a link with anxiety. I have suffered with bad anxiety for about 18 months - 2 years and have been having CBT sessions, I think it has got worse recently as my headaches have been constant and I've had really bad tension in my neck and shoulders. Maybe that's what's kicked off this episode? I'm not looking forward to several weeks of this, I can't take any more time off work after this week as there are procedures which we are put through if we have a lot of sick leave, you basically jeopardise your job if you are off sick. That doesn't help..

I'll be interested to see if the Power Plate works as I bought one some weeks ago (not for this purpose but for general toning...). Going back my GP next Weds as my script will run out.

Would be interested to hear of anybody else's experiences, especially if there's light at the end of the tunnel.... :?

Hannah

2 likes, 64 replies

64 Replies

Prev Next
  • shellywhit
    shellywhit

    Posted

    Oh my symptoms are slight ear pain just off balance when walking standing and can't really concentrate on much and falling to one side and this bloody nausea
  • shellywhit
    shellywhit

    Posted

    Look on the internet for cooksey hawthorn excersise program that will give you the excsrcise till you get to vrt that's what ent give you on your 1 st visit x
  • MandiMoox
    MandiMoox

    Posted

    Your symptoms sound similar to mine. Yeah waitin list ere is ridiculous apparently it's not urgent ( although how can they decide what is or isn't urgent until you actually go through some thing) however in the mean time I will try everything. I was told VRT can take months before seeing an improvement so don't be disheartened if it's not doing anything I'm sure I'm time it and apparently provoking the dizziness is a good thing because your brain can start to compensate. Had your read the site labyrnthitis.org where 2 women talked about there experience I have found this very helpful. I hope we both end up full recovered at some point. I know for certain I will not take my life for granted I never realised how much I miss doing the smallest of things. X
  • MandiMoox
    MandiMoox

    Posted

    Thanks for that I will def look at it. X
  • MandiMoox
    MandiMoox

    Posted

    Your symptoms sound similar to mine. Yeah waitin list ere is ridiculous apparently it's not urgent ( although how can they decide what is or isn't urgent until you actually go through some thing) however in the mean time I will try everything. I was told VRT can take months before seeing an improvement so don't be disheartened if it's not doing anything I'm sure I'm time it and apparently provoking the dizziness is a good thing because your brain can start to compensate. Had your read the site labrynthitis where 2 women talked about there experience I have found this very helpful. I hope we both end up full recovered at some point. I know for certain I will not take my life for granted I never realised how much I miss doing the smallest of things. X
  • shellywhit
    shellywhit

    Posted

    Yeh great site that but it sent me under a bit thinking how long they had suffered I can't cope now, missing my social life and people will soon get fed up and lose there patience, I keep saying to my fam

    When I'm better I'm going to be such a different person and never take anything for granted ever again and I will never moan lol, we bought a new caravan In Jan booked loads of holiday and I've not been able to to one ,, dizzy and sick in a small caravan I wouldn't be able to cope xx we will have to keep positive x

  • MandiMoox
    MandiMoox

    Posted

    I understand what you mean but they seemed to have had it the worst at the beginning for a long time I only actually had the spins for about 10 mins then I've just suffered with the dizziness off balance ear ache nausea rest of the time so it just depends on how quickly you could become active again as resting in bed for months on end doesn't help with compensating I'm going to venture out today with my mum for a bit I managed to get some decent sleep (although very weird dreams) I seem to have one good day then few bad etc hope your ok and try to do more things gradually xxx
  • shellywhit
    shellywhit

    Posted

    Yeh I hope you have a good day today I can manage about an hour when I go with my husband or daughter et me no how you go on x
  • MandiMoox
    MandiMoox

    Posted

    I managed a good few hours today still felt uneasy but it's true if you don't think about it you don't realise it as much although as soon as I stopped and sat down I felt like I were swaying again and felt sick but overall it's been a good day but I'm not getting my hopes up as I know I will have bad days too just have to go with it. Hope your feeling bit more positive today message me on here any time to talk I'm always here to listen :-) x
  • shellywhit
    shellywhit

    Posted

    Aw thanks for that glad you have had a better day and yeh you have good and bad days that's what makes this illness so cruel you think your getting there

    Keep intouch

    Shelly x

  • tiff2
    tiff2

    Posted

    Curious how yall are doing now?
  • beauty007
    beauty007

    Posted

    I thought I was getting better have had this since July!....it's completely ruining my life! I'm not taking any medications as I heard it slows down the compensation process....has anyone got any better? Hey I'm interested to know how old everyone is...every time I've mentioned I have this thing..I've had people say its common in older folk....errrr I'm 31...it just makes me feel worse...I'm doing vor exercises can't really see a massive improvement il keep you all posted smile
    • craig_31416
      craig_31416 beauty007

      Posted

      Hi I have all the same symptoms and have had them for about 3 months can you please tell me if there's any light at the end of the tunnel 

      Thanks 

    • tiff2
      tiff2 craig_31416

      Posted

      It has been 16 months since this all started for me. My ears are still full. I have more good days than bad days now. My stamina has never returned to full capacity. I am starting to be able to do more physical activity. I brisk walk sometimes 60 minutes/day. I still have moments of sligth dizziness. I have body aches from time to time. I'm pretty sure my ears will never "open up" completely again. When I have head colds, it makes it much worse. It was a very slow recovery. And still recovering...good luck, Craig.
    • crystal29909
      crystal29909 beauty007

      Posted

      I know it's been a year since you posted but I was curious if you were better now. I am 40  yrs old, diagnosed with labrynthitis and I've had it so far since June 3rd. Granted the first week was the worst , it gradually got to the point where I can tolerate it and I try not to think about it but some days it's really noticeable. Just wondering if anyone has completely gotten over it.
    • craig_31416
      craig_31416 tiff2

      Posted

      Thanks for the reply, iv had a good couple of days but then it's hit me again today missy through the day does this happen to you? 

      Thanks 

    • crystal29909
      crystal29909 craig_31416

      Posted

      Today is a pretty dizzy one . It is strange but I seem to feel better in late evenings. I guess maybe it's from not moving around too much but that is just a guess,
    • jessica49796
      jessica49796 tiff2

      Posted

      For the full feeling ears, and to curb the dizziness, I've found that a Netipot weeks really well. Maybe it's just my wishful thinking, but it's my go to when an episode comes on.
    • jessica39365
      jessica39365 crystal29909

      Posted

      I know it’s been a while so I’m hoping u still check this- Just curious to know if u recovered and how long.. need some hope
    • crystal29909
      crystal29909 jessica39365

      Posted

      Hi Jessica, thankfully I've fully recovered but be patient bc it does take a while. I did physical therapy to learn to recalibrate my center. The ent and my therapist both told me that the more I look around the faster my brain will get in sync with my ear. mine was the right ear it was 78 % damaged from a virus resulting in vestibular neuritis. I never had any ear pain or symptoms of a virus except waking up dizzy one morning. The first week was the worst. The first month seemed better but no improvement by the 2 month I felt quite a bit better but still off balance at times. It was roughly 9 months before I truly felt normal. There's exercises you can do to help. Stare at a focal point turn your head to the left look back and try to quickly look back at the object do it again looking to the right. Stand on one leg and with a pen in hand stretched In front of you look left ,look back at the pen look right look back at the pen, change legs and repeat.walk forward and backward up and down a hallway while continuing to look left and right into adjoining rooms. I found lots of rest and limiting my caffeine intake helped too. It does take time but it will get better. 

    • jessica39365
      jessica39365 crystal29909

      Posted

      Thank u so much for responding. This is really scary. I’m still 10 weeks in but it’s been a rough 10 weeks. My balance tests came out normal but my physio therapist said I have Labyrinthitis- and I agree because of all my symptoms. It’s just scary but great to know u recovered. Did u ever have pressure in ur ears?
    • crystal29909
      crystal29909 jessica39365

      Posted

      No I never had pressure but I did occasionally have a high pitch ringing. Has your dr ever tried the eppley maneuver? It's used to help dizziness from bppv.  unfortunately it didnt work for me but if you're like me I was willing to try anything. Truly what worked best for me was the looking and balance exercises and of course time. 

    • jessica39365
      jessica39365 crystal29909

      Posted

      Thank u. I have done 3 Epleys and I’m better now.. I don’t have dizziness more unbalanced at times and I have my ear pressure and eyes tha have a hard time focusing. I started the exercises so hopefully it works.. thanks again for the response and hopesmile
    • natalie09334
      natalie09334 jessica39365

      Posted

      Hi , just wondering how your doing?  I'm currently on week 9 of this and I see improvement but it's so slow! I'm exhausted ! 

      I feel now like my head is floating? Does that sound silly? Like I'm spaced out? 

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.