Labrynthitis the invisible illness !!!!!

I was diagnosed with viral labrynthitis on the 23rd Dec 2016, I am on week 8 now !!!!!

When I first got this awful illness it came on so suddenly it frightened the life out of me, the room was spinning, my head was spinning, I did not have a clue what was going on. The next day I could not get out of bed, felt awful, I started feeling nausea and then started vomiting.....the sickness lasted a few days but could not get out of bed for about a week, the spinning & dizziness has continued to this day.

I am living an awful life at the minute, not been able to work for 8 weeks, not driven my car, not able to go shops on my own, it's been an absolute nightmare. I think I am going crazy. I have had to rely on all my family & friends for help.

People think you are fine as you look ok on the outside but your head says other things, I wake everyday depressed as I know it's still there & getting that feeling that it is never going to go!!!! I feel depressed, I cry, I try & be positive but it's extremely hard when you feel so awful & you can't see the light at the end of the tunnel.

You have this feeling in your head like you are drunk all the time or when you have had a really hot bath & get out of it too quick & also your head can sometimes feel heavy & your eyes are not completely right ... it is just a feeling that you can not always describe!!!!!

I was given betahistine which I feel did not work for me, I had the eply manoever done which didn't work as I didn't have the vertigo .. seen 2 ENT consultants, had hearing test & also had an MRI , & all I get told is that's it's viral, you have to see it through, there is nothing we can do for you.....I am taking stemetil which I feel has helped me a bit, even though I am dizzy everyday.

As I said I'm on week 8 now & I can actually say I think it's starting to feel a little better, defiantly going the right way now, but still no where near right, so I am now praying that there is light at the end of that tunnel. All I want to do is be me again, laugh again & live a normal life again & go back to work !!!! ....as it is so disabaling.

If there are any other suffers out there with this most horrible thing, I would like to know if this is normal & no one actually knows what you have got & no one knows how to actually treat it.

16 Replies

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  • Don't worry it will pass, already on its way probably. I know it's tough but I would trade my RA with you any day (hope you don't have them both!) It's an infection in your inner ear, evidently viral. Drink a lot of fluid and rest. Take care😊

  • I did have both Sunna, it's awful x

  • Hi Sallymac71

    I know exactly how you are feeling.

    I have had this about 4 times.Like you the first time it came on in less than a minute and I hadn't got a clue what was happening to me.I was so frightened.My arms and legs were all over the place ,my head wasnt part of me and vomitting - oh wow I have never been so sick.

    My hubby called the doctor.She came out about 10.30 one night andcsaw me.

    She gave me a stemetil injection.I must have gone off to sleep quite soon and when I Woke the next morning I Felt a lot better.I was still dizzy and nauseous but nothing like the previous night.For 2-3,weeks I Took stemetil Tablets which helped to keep it under control but there was an occassional wobbly moment.

    This hapoened about 3 more times in the next few years but it always seemed to coincide with some sort of ear/ chest/ throat infection.

    On the subsequent occassions I have had stemetil tablets and whilst they seem to work the tablets are not as effective as the injections.

    8 weeks seems a long time to feel like this ( and as you say no outward sign of illness,) but this is a vile condition and you sound like it is getting better but it takes time.

    Try and rest,no sudden turns or movements as it will set you off again.

    Just hang in there it will get better.

    Can you connect this to an incident like an infecrion or a cold ?

    If so just be aware for the future,so you can maybe preempt another attack.

    I hope you get better very soon .

    Crusee

    XX

  • Thank you , I had been a stressed at work & just did not feel 100% before this awful thing struck !!!!

  • Hopefully you will be recovered soon.

    Take care.

    Crusee

    X

  • I really feel for you Sallymac.....I first had Labrynthitis,20+'years ago,...just as you describe it........I promise you it does get better & life will go on as normal......but the first episode always seems to last forever!

    You have probably been told it's a virus & that once you have it you are stuck with it...but don't panic.....I have only had it three times in total...not too bad in 20 years....& the last two episodes only lasted a week or so & weren't nearly as bad as the first.

    The only lasting effect I have is I am very careful not to turn my head too quickly when I'm lying down as that can make me dizzy.

    Unfortunately there is no treatment apart from what you describe.....it's a nasty little virus that thankfully lies dormant most of the time.

    So relax as much as you can...I think stress makes it worse...but then I blame stress for everything!

    Get well soon!

    AC

  • Thank you for information ... but feel like it's never ending xx

  • Hi Sallymac

    I only experienced this once over 16 years ago and my then GP paid a rapid home visit with Stemetil, which put it to flight in about 48 hours. At the time I was trying to get used to very expensive new varifocals, but had to abandon those as they added to the giddiness with my vision: I've relied on bifocals ever since!

    My worst experience was balancing my butt on one bucket whilst vomiting into another. My late husband was an absolute brick throughout.

    You have my sympathy .....

  • Thank you

  • I can't even wear bifocals....my ENT consultant said I would be "asking for trouble" as I developed vertigo after having labrynthitis...great fun lugging two pairs of glasses around all the time --NOT!

    But at least with online sites you can afford to buy a new pair quite often...

  • I can totally empathise. I've had a few time but the recent was the worst. I couldn't stand up at all or move anywhere, my vision was completely double so I didn't open my eyes, room spinning etc. I hadn't had a virus or anything but I was very worn out around that time. Stemitil was brilliant but, so so scary!!!

  • I had it a few years back Sally, your right it's hurrendous. It came on at work for me on the Nightshift and I was crawling on the floor with the pain,vomiting and was totally of balance, I didn't know what was going on! It's frightening. One of my colleagues thought I'd been drinking because I was staggering into things! How I got home I don't know. I lost a week at the start of it and had to crawl to my bathroom/get my husband to take me. It took about 3.5 months before I started feeling well again, so if you still feel unwell you may have a wee while to go. ☹️I couldn't drive or work for 4 months with it. I got kytril anti sickness tabs at the time, they helped a bit. I hope you feel better soon, it knocks you for six xx

  • Thank you ... I don't actually feel sick anymore it's just the constant dizziness when walking, drives you crazy, I'm desperate to get back to work & normality x

  • I had this last year, lasted for several months, for me the betahisime worked. I hope you find something to help you soon. I took sturgeon (for sea sickness it helped)

    Anna

  • I find stemetil is helping ... hopefully starting to go the right way. Thank you for your reply .

  • I have Meniere's and it sounds similar. Be careful driving. I was driving one time to a grocery and I had vertigo . I thank God that I was at the entrance to the parking lot. God bless you.

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