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Vestibular neuritis finally diagnosed after 4 months GP visits!

Posted , 12 users are following.

leanne34327
leanne34327

Hi. I am hoping someone/anyone! Can relate to me. It all started when I had a 'funny turn' at work back in November 2013. I'll never forget that day as I haven't felt the same since. I thought I was having a panic attack as I just felt wrong. Strange not really here sort of panicky feeling so I went home and went to bed. I woke up to an even worse fuzzy vision panic feeling and had to lie on the floor while calling nhs emergency number as I didn't have a clue what was happening to me. I calmed down eventually and made my first visit to the doctors who said it was a panic attack and prescribed diazepam. At the time I didn't want to take medication as I felt so unusual. I knew something wasn't quite right. I continued feeling extremely anxious panicky and off balance for weeks on end along with continuous tearful visits to the doctors explaining that my vision was disturbed and my eyes were flickering along with pressure inside my ears. Eventually after about 8 weeks of hell I got an appointment with a balance clinic who did testing and confirmed right ear damage and confirmed vestibular neuritis. I am just posting to see if anyone has experienced the same symptoms as me as when I read posts about VN it seems that I can never find the same symptoms as mine which scares me to death ) : here goes: - I can't think straight, avoid people because I feel I can't hold a conversation because I'm sort of panicky and don't feel like the old me, I have moments of real panic that come out of the blue because I just don't feel right, very small things stress me out like even just someone at the door! I know it sounds silly but I'm just a panicked mess having to put on a front to everyone. The worse symptom at the minute which has gone on for a long while is a pressure in my chest/back that doesn't go. I've read somewhere it's muscle strain due to my balance but I just don't know what to believe anymore. My thoughts are just different since I've had this, I don't know where my old personality has gone. It's like I'm hyper aware that I'm not right. Anyone's advice would be much appreciated, I've had this since November 2013 and I am doing gaze stability exercises 5 times a day. I'm having good and bad times but generally feel a nervous wreck. It's so draining. Alcohol doesn't even relax me anymore, it just makes me more lightheaded and panicky. Sorry for such a long mo any post but no one can understand why I have been so weird for months. Please help. Leanne. 

4 likes, 32 replies

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  • joanne05863
    joanne05863 leanne34327

    Posted

    Hi Leanne

    I am so sorry it has taken so long to diagnose this awful condition the problem is GP"S do not understand enough about this condition and people with this illness need more support. It is common with Vestibular damage to experience all the things you are experiencing, supermarkets bright lights loud noises even being around people in large crowds can really affect this, I cant hold a conversation with someone for long periods.

    Try and get as much sleep as you can as this does help with the syptoms, go back to your Gp and ask for further tests balance tests, ear presure tests as dont no if you feel as though you have lots of presure in your head its like wanting to pop a balloon and let the air out.

    Also different weather can affect your syptoms if its stormy for instance, Dont give up I no its not easy believe me. Try not to drink alcahol it will only make you feel worse I used to enjoy a drink to relax but since I have had this illness I cant drink anymore.

    Please go back to your GP and tell them how bad you are feeling I have found antidepressants have helped with my symptoms and enable me to try and cope better with it. You are not alone with this Leanne. JoJo xx

     

    • leanne34327
      leanne34327 joanne05863

      Posted

      Hi Joanne. Thank you for your response, it's much appreciated. Do you mind me asking what anti deppresant you are on? I am considering taking the one I have been prescribed but I'm just scared in case it makes me feel strange, I've had enough of feeling strange for too long now! Ha ha! Thanks again for your reply. It's nice to hear positive responses. Makes me feel more determined to ride this out! Leanne ( : 
    • joanne05863
      joanne05863 leanne34327

      Posted

      Hi Leanne

      Honestly they really do help with the symtoms and to be honest who wouldnt get depressed living with this illness, I am on o Fluoxetine 40mg a day, it may make you feel strange at first but give it at least 2-3 weeks to see any difference.

      Also ask foe Betahistine they have also helped me, Hope you sort things out JoJo xx

    • leanne34327
      leanne34327 joanne05863

      Posted

      They have given me 20mg sertraline so I think I'm going to get my holiday out the way and then try them when I get back. I'm seeing a balance consultant privately on Friday so I'm going to discuss the symptoms with him. ENT report says I have significant right peripheral lesion. So it's my right balance organ that's buggered ) : it's a lot better than at the beginning I just feel totally uneasy all the time now. It's like it's not the real me, very strange, and yes I get the head pressure along with ear pressure and my eyes look all squinty and red. It's not a good disorder to have hey! I'm glad you are getting on better with the fluoxetine. I will seriously consider the anti deppresants when I'm Back off holiday . Thanks Joanne. I appreciate messages of people who sound normal like me! Leanne. 
  • joanne05863
    joanne05863 leanne34327

    Posted

    Oh you are more than welcome, I have exactly the same but on the left side, It does get easier and you will have your good days and bad days but rest up and sleep, If you are going away by plane use ear plugs, If your travelling by car get some Bucastem from the doctor they stop the sicky feeling have a nice holiday JoJo xx
    • leanne34327
      leanne34327 joanne05863

      Posted

      We must definitely stay in touch then hey. It's nice to speak with someone with the same problem. We are going to Greece so I'm panicking about flying already but I will take earplugs, thanks for the advice. You are so right with good and bad days, it's such an up and down process! You take care too Jo. Again, the advice is greatly appreciated. Kind regards. Leanne ( : 
  • joanne05863
    joanne05863 leanne34327

    Posted

    Yes Im here if you need a chat as I do no what this is like funny thing is my sister has also just been diagnosed so it must be in the genes.

    Make sure you get the ear plugs for the flight JoJo xx

    • leanne34327
      leanne34327 joanne05863

      Posted

      Morning Jo. Sorry to bother you first thing. I just wondered if I could ask you a couple of questions seeing as it sounds like you have exactly the same as me. How long have you had this for and what age are you (if you don't mind me asking?) I'm 29. Do you feel panicky for no reason? I seem to be constantly in an uneasy state which gets on top of me because it never goes away. I'm not worried about anything so it just feels so scary. When I lie in bed I get feelings like I'm falling (like little rushes really) and pressure and pains in both ears. I'm so sorry to go on, I just wonder if Im going mad sometimes. My chest and back feel tight and even swallowing feels different. Such strange symptoms. I'm not normally a person who would stress about symptoms but there's just no break from these. Sorry to bother you Jo but I just wondered if you had any of this, it might make me feel more human if you have! Thanks a lot. Leanne xx 
    • leanne34327
      leanne34327 joanne05863

      Posted

      Ps: I'm sorry to hear your sister has it now. I hope it's not too bad for her. X
  • joanne05863
    joanne05863 leanne34327

    Posted

    Hi Leanne

    Soory Ive just checked my computer, I am 48 and Ive had this six years a bit older than you lol, Leanne its not unusual for you to be having these symptoms and it sounds as though you are getting anxiety attacks on top of the vestibular problem you really do need to try and relax as it will ease all of this.

    And the anti-depressants will help with all the crazy things that are happening, sometimes when I go to bed I feel as if Im on a boat its horrible, You need to take some kind of medication Leanne to help with the anxiety, I got very anxious when I fisrt got Vestibular problems I worried about other things being wrong with me because I was feeling so ill.

    It does get easier but you really do have to get plenty of rest otherwise it is awful. If you think about your day is it worse when you have been rushing around I no I feel dreadfull.

    Please ask me anyhing sorry to have got back to you so late JoJo 

    • leanne34327
      leanne34327 joanne05863

      Posted

      Hi Jo, thanks for your reply, sorry emailing first thing in the morn I feel like I'm stalking you! ( : yes I think all what you have said sounds spot on. Definitely about the anxiety. I have got eustation tube dysfunction too! They never said that would make it worse though so thank you for telling me that. They diagnosed eustation tube dysfunction before the neuritis. I can't believe you have had it that long! That scares me and I really feel for you. I just get so distressed about the psychological feelings that go with this. Give me child birth any day compared to this! I'm going to see that consultant tomorrow so I'm hoping I get some positive help. Thanks so much for your time Jo. It's much appreciated as sometimes I feel very down about how different I feel. Thank you xx 
  • joanne05863
    joanne05863 leanne34327

    Posted

    I also get a very red ear on the bad side and constant ear ache you must try and have some presure tests on your ears as they found out I had eustachian tube dysfunction which made it a lot worse please go back to your doctor and sit and talk to them tell them how low you are make them realise how bad you are feeling, also try and talk to your family and explain how hard it is you need support hope ive helped JoJo
  • joanne05863
    joanne05863 leanne34327

    Posted

    Please Leanne Im here you are not stalking me Please believe me I no how you are feeling with this, what got me was loosing my independence and not being able to do what I did before I got this,Mine has eased as I said I have good and bad times and you learn to be able to cope with it and somehow live with it.

    Please let me no how it goes with the consultant, I saw a proffesor Luxon Queens square London she is fantastic but a long waiting list. Please dont stop messaging me ok as you now have someone who really understands how your feeling ok. Do yourself a favour and write down everything you need to ask ok otherwise you will forget as this can play with your memory too. JoJo good luck

    • leanne34327
      leanne34327 joanne05863

      Posted

      Thank you so so much. I'll let you know how I get on. A good idea to write down the questions. I'm definitely going to do that. You have really helped xxx 
  • joanne05863
    joanne05863 leanne34327

    Posted

    Hi Leanne 

    Also try this site http://www.labyrinthitis.org.uk/links.htm when I was first diagnosed I found this site and it was a godsend, I met and became good friends with another lady and we have stayed friends since give it a go you can find out so much information, But remember Im here ok JoJo

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