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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

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  • Guest
    Guest

    Posted

    Here's my current experience with what the doctor has currently labelled as viral labyrinthitis. Nearly 3 months ago now (beginning of janurary) i woke up one morning feeling fine, about an hour or so after i'd gotten up i suddenly felt really dizzy and was extremely close to fainting(had tingling fingers, ringing ears, hot cold flashes, headache). so i lay down for fear of passing out and was unable to move for roughly an hour or so. tried to walk later that day and nearly passed out again. But as i've never suffered from fainting before i took it as me being dehydrated. The next day i was still feeling incredibly light headed and wasn't able to walk anywhere without aggravating the feeling. After a week of continuously feeling really light headed and what feels like being drunk i went to my doctor who sent me for blood work(after 3 seperate lots of blood tests nothing particularly serious has been found), along with basic tests(checking bp, reflexes, balance etc) and basically told me to come back if it persisted. Since seeing my doctor the first time i have seen her again 4+ times. The dizziness has increased to a constant feeling, all day every day, walking anywhere makes it worse(so does an increase in temperature), i have a constant ringing in my ears, they are also quite muffled and have the feeling that i need to pop them all the time, my fingers tingle a lot and a get quite bad vertigo quite a lot(from sudden movements) and feel absolutely exhausted all the time. Thankfully i don't get too close to passing out very often, although i had a really bad episode yesterday and was unable to move for two hours for fear of passing out. I'm currently on my second prescription of prochlorperazine(28 tablets) which i'm finding is helping loads(generally, yesterday was an exception unfortunately). Before this she put me on sturgeron tablets which did absolutely nothing. The only problem is i've been told i'm not allowed to take prochlorperazine long term(i probably won't be allowed a third lot). I'm really not looking forward to finishing them as i spent about 5 days off them in between prescriptions and i felt terrible again as soon as i was off them. So as it stands there isn't much in the way as \"light at the end of the tunnel\" for me. I think thats pretty much my experience so far. But i really hope that whatever it is clears up soon because i'm so fed up of feeling this way.
    • craig_31416
      craig_31416 Guest

      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 

  • shellywhit
    shellywhit

    Posted

    Hi guest after reading your post everthing you say I'm in the same situation, how did it all end I hope you are well x
    • craig_31416
      craig_31416 shellywhit

      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 

    • cweez720
      cweez720 craig_31416

      Posted

      Craig - it's been a year, have you had any improvement with your issue?
  • shellywhit
    shellywhit

    Posted

    Going through the same thing too, I'm interested to know is there a light at the end of the tunnel x
  • MandiMoox
    MandiMoox

    Posted

    I'm also going through the same thing too been on all the different medications and none of them work. I was told that they can do more harm in the long term as they slow down the compensation process. Has anyone tried other things like craniosacral therapy or acupuncture I had my first session of craniosacral therapy yesterday and it was quite interesting and I did feel a little better however today Is a bad day. I am at the point where I will try anything. I have been suffering with Nausea this last week too so have bought some sea band and been eating ginger biscuits. Seems to help for a little while. Anyone been refered to ENT or tried VRT?
    • craig_31416
      craig_31416 MandiMoox

      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 

    • Fudgeybear1
      Fudgeybear1 MandiMoox

      Posted

      Hi, I ve had labythrinitus for 6yrs,I have craniosacral therapy,I loved it and it did seem to ease my symptoms a little,it got rid of all the tension in my neck and shoulders,I had stop getting it due to financial reasons,but really helps you relax.i don t think there is one magic thing that's cures these conditions,over the 6yrs I ve had it I have tried so many things some make you feel a little better for a short time.i am now concentrating on helping my family,taking the dog for short walks,and doing housework,I ve stopped searching for the life I had,I havn t given up I m just trying to like the one I have .know.its hard and I have severe anxiety,but  I m trying to stay positive.good luck ,and if you find anything that really helps please let me know 😀
    • TerryAnne
      TerryAnne Fudgeybear1

      Posted

      I was just wondering if you had anxiety before you had labyrinthitis?

      Thank you.

    • Fudgeybear1
      Fudgeybear1 TerryAnne

      Posted

      Ni I didn't t life was good and I was happy,I did have a cold about two weeks before x
    • paul_34168
      paul_34168 craig_31416

      Posted

      Hi I've had it the same time as you but it isn't a badas some ve benreig about on here but can you tell e do you get tired Craig ?
  • shellywhit
    shellywhit

    Posted

    Hi Mandi

    Also got The seabands on 24/7 don't no if they help

    Or not I wear them anyway lol im 3 month in had ent app brain scan and started vrt, because this is dragging on now and I'm feeling no better I'm going for vistibular testing on Friday, I might look into accupinture what the other thing you have had x

  • MandiMoox
    MandiMoox

    Posted

    How long have you been doing VRT I've heard it takes a while to notice any benefit And at first it can make you worse I really want this I'm trying to go private to jump the queue as NHs waiting list is endless. Did you eve have ear pains with this condition I haven't suffered with tinnitus which I'm pleased about this although there is still time for this to come along I have had popping in my ears and pain. What does vestibular testing involve?
  • shellywhit
    shellywhit

    Posted

    To be honest I was having a really good few weeks and then I went to

    Vrt and given excersises to do that was like 5 wks ago when my symptoms went worse and the nausea started , I live in Manchester and work for the nhs so after 6wks going to the Docs with the dizzies he refered me to ent , I rushed it all up working at the hosp saw ent had a scan and had vrt all Within the month, because I'm not getting any better that's y there sending me for vistibular testing look in google dreading it apparently makes you more dizzy, I only waited 2 wks for that , I think I'm lucky to live in the city where the waiting times arnt too bad x

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