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Does this sound like Vestibular Neuritis?

Posted , 9 users are following.

jamest17
jamest17

Hi

I'm so glad I've found this forum. I am a healthy 38 year old, no previous illness or ongoing issues. In June 2015 I was sat in my garden when I felt like a switch was pushed in my head and I felt drunk or lightheaded. I'd had a cider and was on hay fever relief and put it down to mixing the two.

The day after I felt the same, light headed, like I was in a dream, hazy or just disengaged from reality. I shoot weddings for a living and the following weekend I fell asleep whilst the wedding breakfast was on, so I figured I was unwell and went to see my GP. She diagnosed a severe ear infection and gave me a antibiotics.

4 weeks later the haziness was just as bad, making driving hard and I was constantly worn out at 5pm. I found dealing with my then 4 month old really hard and avoided helping my wife. Work was a nightmare, exhausting and I'd be so dizzy by 7pm. Then disco lights would send me all over the place.

i went back to the doctors (different GP as the wait was 3 weeks for my own one), he blamed it on hay fever. I knew it wasn't and rebooked for my own GP in September. She said my left ear was recovering but was still inflamed and the dizziness should have passed so she referred me to an ENT.

I Opted for a local ish one in Rochdale at a private hospital via an NHS referall. I had an ear test which showed no loss of hearing. ENT has pretty much ruled out VN and has instead opted to operate on a deviated septum which I had in December 2015. After the operation I felt worse and now there is no improvement. ENT saw me in January then told me to come back in March but says there's nothing wrong with my hearing or ears.

I think it's VN. My symptoms came on suddenly, have not improved over 7 months at all, are constant with no relief, I feel hazy, light headed and tired. I don't feel 'sharp' or 'on it'. My vision is blurred at times and I'm sensitive to light, wearing glasses make me feel even worse (but I need glasses or contacts). I've never felt sick or unsteady on my feet, but I don't feel like me. I'm working hard to stay positive but feel frustrated at my symptoms.

A family friend is an NHS physio and has done an assessment and given me so VRT exercises (30 seconds looking left and right and up and down 4 times  4 times a day). Been doing this for 2 weeks, some days I feel less affected but I'm always hazy. Seeing her again this week for the next set of exercises.

i read these forums and I am convinced I have VN. I feel like other people on here. My ENT isn't having it though. I'm booked back in with my GP in 3 weeks (earliest appointment) as she's very good no pro active. I've not had any of the tests done that others have on here looking at my eyes. I have seen a chiropractor based on advice on other forums and he thinks my tracking is off on my left eye. Chiropractic sessions offer short term relief but no overall improvement.

Can anyone advise on what I can do to get relief from symptoms and should I demand an MRI (the physio says I should just to rule stuff out) and I feel that I should have far more tests than a hearing test to rule out VN. Manchester has a huge vestibular department which I feel I should go to to be fully checked out at. Should/can I demand this on the NHS. 

Any my help or advice would be appreciated as I have 46 weddings booked in to shoot this year and I can't do another year of struggling like last year. 

0 likes, 12 replies

12 Replies

  • donna40025
    donna40025 jamest17

    Posted

    James you seem clued in and on the ball - go to the balance clinic and yes have an MRI to rule out any nasties. I had BPPV so I was falling a swirling everywhere for 5 months so I know exactly how your feeling and I also have MAV! It's all under the same umbrella : flashing lights , headaches , someone else's glasses , brain fog , anxiety, exhaustion due to over stimulation, nystagmus eye movements , migraines , out of body presence ( like it's not you )! Yep once was healthy , doesn't select age bracket but more prone to over 50's and doctors are no good unless they study ( Specialsit ) in vestibular ! You have nothing to gain not going to a vestibular specialst and have a MRI ( referrals needed and blow off the 7 minute doctors as it the top 10 misdiagnosed conditions ! Good Luck and lucky you can still work ! 
  • nanci28940
    nanci28940 jamest17

    Posted

    Hello James,

    I read your entire description, and the one thing that stood out for me is that you had a septal surgery.  I have been dealing with the issues you describe for 6 years now.  I had a surgery for a deviated septum 11 years ago.  I have often wondered if that screwed up the normal "vacuum" that's in your head, as far as sinuses etc.  Unfortunately, from my own experiences and from reading those of others, it doesn't seem like there is one clear-cut issue causing these problems.  I think that it involves many things going on - possibly beginning with stress - but there always seems to be a connection with a stiff/sore neck, and those muscles at the base of your skull tightening up.  Migraine and TMJ seem to be a part of that problem, and in turn can lead to feeling dizzy and being bothered by outside stimuli.  Obviously, ruling out something more dangerous is important, but more than likely this is more of a mechanical issue than a metabolic one, and not the result of a tumor etc.  Try and stain calm, if you feel congested use antihistamines or decongestants, and maybe go in for a consult on your neck.  The exhaustion is probably from your body just trying hard to correct itself. 

    I wish you the best. Keep searching for someone that can figure this out for you

    • jamest17
      jamest17 nanci28940

      Posted

      Hi

      The nose surgery was 5 months after my symptoms started, the ENT thought it could be the cause even though I be never had any issues previously. I think it's a red herring and that the ear infection I had which lasted for 6 weeks is more likely to be the cause of my foggy head through VN.

      Cheers for the support!

      James

  • pinky25194
    pinky25194 jamest17

    Posted

    Hi James

    I think an MRI is a must just to rule anything out plus it can put your mind at rest. Also, ENT doctors know nothing about inner ear issues. I started with VN in sep 2014 and waited 5 months to be seen by ENT in Blackburn. They thought I had BPPV and did the Epley. Still no better a month later so sent for MRI to be told it's probably labyrinthitis and that can take up to 12 months to go away. I had no hearing loss so it wasn't that at all and after 12 months I was still not better. So I gave up with them. My sister in law had all the balance tests done in Manchester and was diagnosed the same day I think? I didn't go for those tests as I was assessed by a good VRT physio in Manchester. I was seeing progress after about 3 months doing VRT until I had a setback but I do think it definitely works. You can go to your gp and they can refer you for the balance testing. Good luck!

    • jamest17
      jamest17 pinky25194

      Posted

      Hi

      I had no idea ENT's don't know about inner ear stuff. I found the Manchester centre online and it seems the perfect place to go to be assessed, I'll be pushing my GP to refer me (she's very good so I'm hopeful). After 7 months I can't see it being anything other than VN, started when I had a severe ear infection and it's never improved. Given me some hope that it can be improved if I get it diagnosed,

      Cheers

      James

  • Gilly_flower
    Gilly_flower jamest17

    Posted

    Hi james , I've been like this since October , fine one day , next morning wham , woke up all over the place , and of work , it's very scary , after keeping on at the doctors , was referred to ent , seems to think it's bppv , seeing an audiology consultant now , he does the eppley manovre , hasn't worked so far ,got to go again tue , also having MRI 3 rd Feb , I can't understand why I feel like it all the time , it's like I'm wearing someone else's glasses , they say at  exsersises will help , and when I move around , it's like everything is moving to fast , when I'm sat I feel like I'm on a boat , be interesting to no what exsersises your advice to do , they say not to get anxious but that's easier said than done , when it goes on and on , and effects everything you do ,take care 
  • Mary_McAvoy
    Mary_McAvoy jamest17

    Posted

    Hi James. Find a balance clinic and let them test you. They look at more than just the results that you're getting from the test at your ENT. And if your ENT isn't responding to your needs. Get a different one. My problems started with an ear infection that wouldn't go away and turned out to be a cyst behind my eardrum. Due to the delay in finding it, it compromised more of the bone than originally thought. I have been in physical therapy with a phenomenal therapist at a balance clinic now for three months I have slowly been regaining my equilibrium. Plus I now wear hearing aids. Keep pushing for answers and don't accept non-answers when you know better. We're here for you. 
  • dee50000
    dee50000 jamest17

    Posted

    Yes, or could be a oroblem with your signals to the brain. Balance center should help in either case. Again, good luck.
  • dee50000
    dee50000 jamest17

    Posted

    Yes, or could be a problem with your inner ear signals to the brain. Balance center should help in either case. Again, good luck.
  • jamest17
    jamest17

    Posted

    Second appointment at balance clinic turned out to be another ENT who fibbed me off saying it wasn't balance despite not even asking my symptoms. Referred me for an MRI which is clear. GP now referred me to a neurologist. Will update on that.
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