\u003cp\u003eQuelqu’un d’autre a-t-il déjà ressenti des douleurs musculaires (jambes et dos) et des spasmes en essayant de garder l’équilibre lorsqu’on souffre d’instabilité, ou est-ce simplement parce que je suis généralement en mauvaise forme physique depuis que je marche moins ?\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eQue faites-vous pour y remédier ?\u0026#160;Cela me dérange vraiment, car il semble que le vertige affecte de plus en plus de choses à chaque minute !\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eMerci.\u003c/p\u003e
Hi Dee,
Yes, definitely have had muscle spasms with my labs/vestibular neuritis (I am about two and a half months in). Legs and arms have been twitching on and off for months, and I have had aching calves or jelly legs on and off all this time too, like I did a long run the day before, but I didn't. Another thing I have just started to have is loud knee clicking when I climb the stairs and sudden knee pain while walking, to go with the chronic shoulder pain and the pins and needles feelig in my left arm/foot and even tongue.
I was in pretty good shape before this came along so it's not fitness. I have read that it could be anxiety-related (I don't really believe that – I don't feel at all anxious now) or muscles trying to keep up with balance problems (more likely) or just general nerve confusion (my favourite). The GPs I have seen don't know anything about it and were no use on this particular aspect.
I can't help with a solution – I am just living with it and hoping it disappears when the condition as a whole goes. Things are getting slowly better. My advice would be just to keep moving/exercising and don't let it stop you doing things if you can. I completely agree it is at first *very* alarming: I thought it must be MS or some muscle wasting disease. When I realised other people had experienced similar sensations it became less of an issue for me, and I believe it will eventually go.
Best of luck,
C
Hi
I totally understand how you're feeling. All this started when I had a virus about 4 weeks ago. Dizziness, vertigo, pins and needles in left arm. Back ache, aching legs etc. I've been off work since Monday as I work with vulnerable people in the community and I'm not driving at the moment. I don't think GPs can sympathise, because I still look healthy. Kind of feel like a hypochondriac Must admit though, the anxiety has since subsided, and every day seems to be better. I've been prescribed betahistine for the symptoms. I've noticed that when the dizziness kicks in, my left shoulder is painful. Bizarre!!!
I'm now using aromatherapy, 2 drops of lavender and peppermint behind the ears. Seems to be helping and smells lovely.. There does seem to be a lot of people suffering with this, but fingers crossed, we're all on the mend now..
Wishing you better
S 0:-)
Je commence tout juste à apprendre sur les huiles essentielles et je viens de commander un kit. Dois-je superposer la lavande et la menthe poivrée ou les mélanger ensemble ? J'essaie tout ce qui est possible pour ne plus avoir à reprendre mes médicaments !
Hi
I mix them together in the palm of my hand, then apply to the back of the ear.. I agree, conventional meds make you feel worse, chamomile oil can be mixed in too.. If you google reflexology, there are pressure points on the toes that encourage the blood flow in the ears.. I'm a great believer in alternative medicines.. Seems to be a lot of us suffering with this dizziness at the moment
Wishing you better
Merci pour l’information.
Eh bien, c’est bon de savoir que d’autres éprouvent la même douleur. Pour moi, ce n’est pas de l’anxiété du tout. C’est déprimant parce que je ne peux plus faire les choses que je faisais auparavant, mais cela a certainement une cause physique. Je suis tellement fatigué des médecins. L’orthopédiste pensait que c’était un nerf écrasé - peut-être - la physiothérapie a dit que c’était une mauvaise alignement des hanches (non, l’IRM a montré une bonne alignement). Je suis maintenant à 16 mois depuis le 10 mars. Je constate que si je marche avec une canne maintenant, cela soulage la pression sur mes muscles du dos et m’aide à rester stable, si cela peut aider quelqu’un.
Je suis de plus en plus frustré par le fait que les médecins ne sachent pas ce qui ne va pas. Je vais mieux en faisant mes propres recherches sur Google ! Un véritable gaspillage de temps.
L'entretien d'hier concernant un problème sans rapport a vu le diagnostic passer de « C'est probablement le syndrome de Raynaud », à « Cela pourrait être une neuropathie », puis à « Non, c'est un durillon », enfin à « Je vous envoie faire une radiographie de votre orteil (?!), il pourrait être cassé ».
Pas étonnant qu'ils ne puissent pas comprendre ce problème d'équilibre, ni les douleurs dorsales qui en découlent... Tout cela ressemble à un jeu de devinettes ! Très découragé.
C’est très décourageant, surtout quand on est si désespéré de trouver des réponses. Ils passent au patient suivant et vous vous dirigez vers l’ascenseur en vous demandant comment vous allez faire pour arriver à votre voiture sans aide. Deux choses m’ont sauvé : ne pas avoir honte de demander à un inconnu de m’aider si je me sens déséquilibré, et deuxièmement, avoir trouvé un groupe comme celui-ci où les gens vivent cela tous les jours et s’efforcent autant que moi de comprendre comment aller mieux.
Hi Charlie can you help me I've got vestibular neuritis did you do vestibular rehabilitation exercises.I got a Flickr in my left eye and weak balance system in my left ear. I'm get now cold hand and feet pins and needles. I do not have the spinning Sensation just feel off balance to my left.l hope you are feeling better
Hi Victoria,
I have done the exercises but not much, and then only because I read about them on the internet. The ENT I saw recently said not to bother, that it was better to get out, exercise, and get your vestibular system to relearn that way, through walking, cycling, running etc. I don't think the VRT will do any harm mind you.
Pins and needles was definitely something I felt earlier on and occasionally feel still, in my left side and right now in my lower lip. The non-specialist doctors I've seen don't seem to make any connection with labyrtinthitis, but others on this site and elsewhere seem to have had it, so am no longer worried about it, I think it's just part of the general vestibular dysfunction. I also don't really have much spinning, just the occasional feeling of suddenly not quite being stable, occasionally having to readjust quickly so not to bump into a doorframe etc. I don't think I have had it really severely, but the weird symptoms (including heart) and the worrying about what they could mean have been the worst of it.
My ENT said that if I had VN it would go away. It always does, even if it takes months. And it certainly (or almost certainly!) won't come back. So am clinging to that, and keeping trying to get out and live life as much as possible.
Good luck! As well all know, it's a horrible thing to have.
C
Hi Charlie you said you have a weird symptoms including you heart I have that as will thank you for getting back in touch x
Hello, I know this is an old thread and it is a longshot that you are still monitoring this, but Charlie49460, did your symptoms go away as you were hoping? I have the same symptoms that you talked about, twitching, aching calves, jelly legs, pins and needles etc. My docs say it is not associated with VN. I am hoping that it is. Thanks for a reply if possible.
L
Hello Les,
Yes, the symptoms have completely gone away. I came to the conclusion in the end that it was all related to anxiety. Essentially, my body being super-stressed for a long period of time (I had some extremely difficult years in my career) came out in physical symptoms while psychologically I felt OK. I know I dismissed it at the time, but I’m certain that’s what it was. The best thing I did was buy a book by Dr Claire Weekes called Essential Help For Your Nerves. The ENT suggested this book, and said many of his patients benefited from it rather than expensive psych therapies. Weekes writes that over long periods of stress the body can develop a range of symptoms such as twitches, spasms, vertigo, heart palpitations, etc, but that the really difficult thing is the response you have to these symptoms. Basically, you think you have a serious illness and this makes the symptoms worse. It’s secondary anxiety, if you like, and a positive feedback loop. She recommends facing the symptoms down, accepting, almost welcoming them, while trying to relax your body as far as possible and just watching them occur, knowing they are not dangerous. When I understood this it all made huge sense and they went away very quickly for months. When they came back I practised this again and then went away again. The knowledge that this worked was very helpful in itself. I didn’t just use her book: also a daily meditation and exercise. Dialling down the body’s stress and getting rid of unused adrenaline made a difference.
I know people don’t like to be told it’s anxiety as it seems like you’re being accused of hypochondria, but anxiety is a serious issue. It made my life very difficult for years and it’s still with me, though being aware means I manage it much better and life is good. Yours might be something else of course, and I’m just talking about my own experience.
Hope it helps.
Best wishes,
Charlie
Charlie,
Thanks for the reply. I was surprised that you are still monitoring after 6 years. So were you actually diagnosed with Vestibular Neuritis and what symptoms did you attribute to VN? You are convinced that your other symptoms were anxiety and not “nerve confusion” like you originally thought? Mine could be I suppose, but I do no feel like I am anxious, and some of my symptoms are physically noticeable like the muscle twitching in my extremities. I do not have any heart related symptoms at all. My physical therapist still wants me to continue with a neurologist to try to get to the bottom of it. Neuro appointments are hard to come by around here. Can you share with me the name of the book? Thanks again.
Les