Cela ressemble-t-il à une névrite vestibulaire ?

Oreille, nez et gorge
1

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. 

2

James, tu sembles bien informé et au courant – va à la clinique de l’équilibre et oui, fais une IRM pour exclure tout problème sérieux. J’ai eu une BPPV, donc je tombais partout en tournant pendant 5 mois, je sais exactement ce que tu ressens. J’ai aussi le MAV ! Tout cela relève du même spectre : des lumières clignotantes, des maux de tête, des verres de quelqu’un d’autre, un brouillard cérébral, de l’anxiété, une fatigue due à une surstimulation, des mouvements oculaires nystagmiques, des migraines, une sensation de présence hors du corps (comme si ce n’était pas toi) ! Oui, j’étais autrefois en bonne santé, cela ne dépend pas de l’âge mais on est plus sujet à partir de 50 ans, et les médecins ne sont bons que s’ils ont étudié (spécialistes) en vestibulaire ! Tu n’as rien à perdre à aller chez un spécialiste vestibulaire et à faire une IRM (des références sont nécessaires, et ignore les médecins de 7 minutes car c’est l’une des 10 conditions les plus mal diagnostiquées ! Bonne chance et heureusement que tu peux encore travailler !

3

Bonjour James,

J’ai lu toute votre description, et la chose qui m’a frappé, c’est que vous avez subi une chirurgie du septum. Je fais face aux mêmes problèmes que vous depuis six ans maintenant. J’ai eu une opération pour un septum dévié il y a 11 ans. Je me suis souvent demandé si cela avait perturbé le “vide” normal qui existe dans votre tête, en ce qui concerne les sinus, etc. Malheureusement, d’après mes propres expériences et en lisant celles d’autres personnes, il ne semble pas y avoir un seul problème clair à l’origine de ces troubles. Je pense que cela implique plusieurs facteurs en jeu – peut-être en commençant par le stress – mais il semble toujours y avoir un lien avec une nuque raide ou douloureuse, et avec ces muscles à la base du crâne qui se tendent. Les migraines et le TMJ semblent faire partie de ce problème, et peuvent à leur tour entraîner des vertiges et une sensibilité accrue aux stimuli extérieurs. Évidemment, éliminer quelque chose de plus grave est important, mais il est fort probable qu’il s’agisse plutôt d’un problème mécanique que d’un problème métabolique, et non du résultat d’une tumeur, etc. Essayez de rester calme, si vous vous sentez congestionné, utilisez des antihistaminiques ou des décongestionnants, et envisagez peut-être une consultation pour votre cou. L’épuisement provient probablement de votre corps qui s’efforce de se corriger.

Je vous souhaite le meilleur. Continuez à chercher quelqu’un qui puisse vous aider à comprendre cela.

4

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

5

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!

6

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

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Bonjour James,
Je suis dans cet état depuis octobre. Un jour, tout va bien, le lendemain matin, paf, je me réveille avec des vertiges partout, et au travail, c’est très effrayant. Après avoir insisté auprès des médecins, on m’a renvoyé chez un ORL, qui pense que c’est une BPPV. Je suis actuellement en consultation avec un spécialiste de l’audiologie, qui effectue la manœuvre de Epley, mais cela n’a pas encore fonctionné. Je dois y retourner mardi, et j’ai aussi une IRM le 3 février. Je ne comprends pas pourquoi je me sens comme ça tout le temps. C’est comme si je portais les lunettes de quelqu’un d’autre. Ils disent que les exercices aideront, et quand je bouge, c’est comme si tout allait trop vite. Quand je suis assis, j’ai l’impression d’être sur un bateau. Ce serait intéressant de savoir quels exercices vous me conseillez de faire. Ils disent de ne pas m’inquiéter, mais c’est plus facile à dire qu’à faire, surtout quand ça dure et affecte tout ce que je fais. Prenez soin de vous.

8

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. 

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Oui, ou cela pourrait être un problème avec vos signaux vers le cerveau. Le centre de l’équilibre devrait aider dans les deux cas. Encore une fois, bonne chance.

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Oui, ou cela pourrait être un problème avec les signaux de votre oreille interne vers le cerveau. Le centre de l’équilibre devrait aider dans les deux cas. Encore une fois, bonne chance.

11

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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Did you get anywhere James??

13

any updates??