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Suspected labyrinthitis

Posted , 8 users are following.

tillyboo1
tillyboo1

Hi.I'm desperate for information. A little over 8 weeks ago, I experienced a mixture of sever dizziness, nausea, deafness and tinnitus, all in the space of several hours. I was given antibioitc steroid and anti dizziness injections, 5 in total and then five days of antibiotics and steroid ear drops. I was told I had a middle ear infection and the my hearing and stability would return. I waited two weeks, I still had the deafness, tinnitus and an ear which felt full, and just a little dizziness, more like not being in control of my body feelings, very weird. I visited my GP who referred my to ENT with suspected labyrinthitis. I waited 6 weeks for the appointment. In all that time, I hardly ventured out. I had my appointment last saturday, the 28th Feb. I underwent hearing and balance tests. My hearing as shown moderate hearing loss and my balance test showed a balance disorder. I was told they didnt know what had caused it, I have to have a brain scan. The doctor has tried a steroid injection into my ear, but says the chances of it working are slim, due to the timescale of waiting. Since I've had the tests and the injection, I feel more dizzy, shaky and nauseas. Is this normal? The tinnitus seems to have gone done and my ear dosent feel as full. I'm terrified, as nothing as really been explained to me. All I want to do is lay down and not go, I dont know if I'm doing the right thing by doing that? I'm due back next week for another hearing test and possibly another injection. I'm so scared now and I'm feeling really panicky, I'm not sure now if this is related to the condition or to the fact I have to have a brain scan and the balance tests made me so dizzy, it reminded me just how bad I was. I dont like enclosed spaces ie lifts, so the balance test was hell on earth for me. I'm not a panicky person and very outgoing and strong willed. But this is the complete oppisite of the way I normally feel. Sorry for the lengthy text, but I'm so desperate for help or advice.

0 likes, 31 replies

31 Replies

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  • brenda77455
    brenda77455 tillyboo1

    Posted

    Hi there. I can't believe how similar your story is to mine except mine started 3 weeks ago and I don't see the ENT specialist until 30th March. That's for an URGENT appointment!

    I feel I can't control my body amd my knees feel 'spongy'. I've gone deaf on my left ear and I don't think I'll get hearing back. I'm also

    worried as I think my eyes are not focusing properly and I've been having some double vision.

    I've read quite a lot online since this started and I really think whst I have is an acoustic neuroma. I know we shouldn't self-diagnose!! But I wanyt to feel as well-informed as possible when a see the specialist.

    Anyone else out there have/had/or think they might have an acoustic neuroma?

  • tillyboo1
    tillyboo1

    Posted

    Hi Brenda. The consultant mentioned that to me acoustic neuroma, but then said they're very rare, but thats what the mri scans for. All he said was sudden hearing loss is a medical emergency. But you wait so long to be seen, by that time hearings gone. They have no idea what mine is, apart from sus labyrinthitis. Since having the balance test & injection into eardrum, i've felt permanantly dizzy & sick & spaced, I'm being taken out for walks, though so far only 10 mins, if that. I'm lucky then only waiting 6 wks for ent. I hope you get on ok. Its a bloody awful, scary thing, espcially when theres no treatment & nothing seems to work, i,m taking betahistitine, i had cut down to 2 a day, but since ent i,m back up to 3. All very odd, give me a bout of flu any day! Good luck x
    • brenda77455
      brenda77455 tillyboo1

      Posted

      Thanks for your good wishes Tillyboo. Let us know MRI goes! X
  • rocksolid
    rocksolid tillyboo1

    Posted

    Foe those that need to do an MRI maybe you can do an open MRI. Here in the states an open MRI is not scary. You just sit down and the MRI moves around you.
    • brenda77455
      brenda77455 rocksolid

      Posted

      I've never heard of an open MRI. Don't know if they exist in UK. Has anyone else?
    • tillyboo1
      tillyboo1 brenda77455

      Posted

      Sounds like a ct scan? I've had MRI's overseas & in the UK, and both have been open ended tunnels, though some seemed smaller in size.
    • rocksolid
      rocksolid tillyboo1

      Posted

      Google Stand-Up MRI or Upright MRI

      Emis Moderator comment: I have replaced the link with suggested Google search terms rather than a specific website.

  • Razouski
    Razouski tillyboo1

    Posted

    Hi Brenda,

    Although I had to see a consultant privately I was referred back in to the NHS via A&E for the steroid injections. I had them over the course of 5 days. And yes, I am in the UK. I just wish I'd had them sooner.

  • tillyboo1
    tillyboo1

    Posted

    Hi. Just to let all know who gave advice to me. I had my bran scan today, all very quick & for anyone who's waiting for one, please dont worry, as I did. It was over in less than 10 mins. Saw doc who as no idea still why i have suffered sudden hearing loss in my right ear. Have to back for more tests, hearing aid & brain retraining therapy. At this stage I'm sure whether to get a second opinion, as it just seems mad to lose hearing for no good reason. Apparently its rare & idiopathic ie no known cause. So many thanks to all who gave advice, I wish you well x
    • Razouski
      Razouski tillyboo1

      Posted

      My hearing loss is also unexplained. Like you, I think it's bonkers that I just lost my hearing in one ear within an instant. I had a relapse with the vertigo yesterday, which was also unexplained. Hard to be positive when crawling round the floor and being sick I'm afraid.

      You're lucky if you're tinnitus has gone. We got burgled two weeks ago, and then again this weekend, and I think the added stress has caused the spike in my tinnitus.  However after the disaster I had with the hearing aid (which just amplified the hyperacusis) I had some positive news yesterday when the audiologist said she was going to ask my consultant to refer me to a specialist at Addenbrookes. So perhaps he might be able to tell more about the cause.

    • tillyboo1
      tillyboo1 Razouski

      Posted

      How awful for you. I still have tinnitus, but not as bad. It seems so hard to take in that theres no cause as such. I may very well say to either my gp or audiology about referring to doctors who specilize in this. The doc I saw today also said, some times hearing can just return. Confusing or what! Good luck & hope you get on ok x
  • paula59
    paula59 tillyboo1

    Posted

    Hi tillyboo - glad your scan is over, so onto the bath with rats and snakes then ! How long before you get the results.  I had a little bump in my car on monday and ended up really shakey.  My dizziness has been loads worse and especially today.  Head tight and I did have pins and needles in my cheek, forehead and back of head. My eyes feel like they are being pulled out.  Oh well hopefully it will ease a bit over the next couple of days.  Its turning into a big headache.  I had to get checked out at the hospital and we spent more time talking about the dizziness.  Even she was shocked that no one knows the cause of any of this stuff.  She mentioned having a blood vessel nipped in your neck can make you very dizzy.  Hope your hearing comes back soon.  xx

     

    • tillyboo1
      tillyboo1 paula59

      Posted

      Hi Paula, how awful, I hope you feel better soon. I'm due back to hos on the 8th April, but have been discharged from the hearing section with an hearing aid referral. To be honest my balance has been quite good today. I just want answers as to why I've hearing loss, I would have prefered another injection just to see if it was working. But as they had lost my notes, they couldnt compare to my last test 11 days ago. So they could only go on how I felt and the fact I knew I had moderate hearing loss on the last test. All a bit to inaccurate for my liking. So I'm going for a second opinion, as I havent broken a leg, I've lost one of my senses that I've had for 51  years! I hope you feel better x
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