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labyrinthitis? help!

Posted , 10 users are following.

teri94
teri94

Hello!

I've been suffering with dizziness and a weird sensation in my head for 6 months now. I've been to the doctors and only today been reffered to Vestibular Rehab. I still don't really have a proper diagnosis from the doctors it feels like nobody really understands what im going through which is really frustrating and upsetting. I feel badly when im moving my head about but even when i'm just sat down i can feel awful too. Its such a strange feeling, i never feel like i'm going to fall over but my head doesnt feel right. 

I'm 20 and studying physiotherapy at university and finding it so hard to keep up with my studies and actually cope with my life. I have good and bad days mostly bad. I have anxiety planning my day ahead because i'm scared of how i'm going to feel. Its ruining my life and after a recent breakup with my boyfriend im finding it really difficult to deal with my emotions aswell because of how dizzy i feel. I'm a really active young woman, i'm a powerlifter and workout nearly 4 times a week which is a real struggle sometimes as the dizziness will hit me when im standing up from laying on benches etc. The gym is my only outlet from it all and i feel like that is being taken from me too as it sometimes makes me feel worse. I just want to feel normal and have my life back.

My doctor has prescribed me betahistine which haven't helped yet but ive only been taking them for a week so hopefully soon ill see some changes. I've read alot about labyrinthtis as my mum occasionally suffers with it too. Does this sound like labyrinthitis? The docs thought i was anemic but my blood tests all came back fine. 

If anyone has any advice or support to give me it would be much appreciated. I feel very alone and cant see any light at the end of the tunnel. 

Thanks

Teri smile

1 like, 27 replies

27 Replies

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  • marlene21102
    marlene21102 teri94

    Posted

    Hi Teri wish I could help out with this balance lot of us have going on ,no  one can fathom it out ,but seems more joining the ranks daily .

     I've had it going on 4 years this summer ,you name it I've tried it  I've had 4 eye tests ,not eyes or eye pressure .

    most on these sites have done the same ,even the exercises ,ENT visits ,bearing in mind ,we're going to different ENT's still no outcome to solving this issue .

      Look up Brain and Spine foundation ,I did get a free booklet ,that explains these different balance issues ,but not the cure all for it ,it does give you the exercises ,go look them up .

      I've tried antihistamines ,magnets no help .

     What does your mum say ,as you say she has odd bout of it .

      Your young to have this,but it's bad for any age ,keep going back to your Dr ,sit on them if you need to ,take your mum with you to .

      Best wishes 

    • rocksolid
      rocksolid marlene21102

      Posted

      I have had it 4 yrs as well. It looks like I may have found out my problem. Look up SCM muscle. It's a muscle in your neck and it can do some bad things to you when it's messed up. I am doing dry needling for it and I think it has helped. Look up dry needling as well.
    • teri94
      teri94 marlene21102

      Posted

      Hi Marlene,

      Bless you thankyou for your reply, sorry to hear you're suffering too and have done for 4 years. It scares me to think it could last that long for me. How do you manage to cope with it? Does it still effect your every day life or do you just learn to deal with it? Im trying to learn to cope with it but its so hard when im such a busy and active person. I will look up the brain and spine foundation exercises thankyou for the suggestion! My mum has never had it for as long as me so she's a bit stumped! She usually just recovers after a few weeks. 

      Thanks for your help 

    • teri94
      teri94 rocksolid

      Posted

      Sorry to hear you're suffering with dizziness for so long too. Thankyou for the suggestion I will look up SCM muscle now!
    • marlene21102
      marlene21102 teri94

      Posted

      Hi Teri  I truly didn't think 4 yrs on ,Id be like I am dealing with this .mine is daily ,it will set anxiety off ,as I suffer from the dreaded tinnitus ( ear hissing ) ,so it's never a good day with that alone ,but I had that prior to the balance .i have had neck ache for past 9 years ,brought on from head virus ,which started my probs off in the first place .Like yourself I was always well .Just proves one virus can do all it has .

        I Di have a neck scan 2 yrs ago that showed up 2 neck bones out of line ,had these put back in ,but think over 9 yrs damage had been done  

       Have you had any sports injury etc as you say you are active  but just not registered it at such a time .Go see if you can get into a brain injury clinic  it's not as it sounds. But been told they're though at checking things out .think my next look into doing .least your mum knows what you feel with having it herself .Its a spiteful thing to have ,just trying to walk in straight line at best of times ,so again that keeps you sitting an awful lot ,not what you want hey .

        Get back at tell us how your doing ,and anything you've found that's helping etc ,always good to get feedback .Try and enjoy life ,don't let it rob you at such a young age .

    • marlene21102
      marlene21102 rocksolid

      Posted

      Hello Rocksolid ,will check this out ,not heard of this .i look into everything that's brought forth. Be silly not to .All it might need is just one thing to turn things around ,see your 4 yrs in as well  who'd have thought it hey ,not us for sure .

       Darren on the Dizzysite ,has gone into varifocals and says he's somewhat better ,not heard in fortnight how he's still doing  .

        Thanks again for info. Will get back and let you know .Hope you've found.

    • jodie77731
      jodie77731 rocksolid

      Posted

      Rocksolid! I read your post re: SCM just 2 hours ago and reading online of it the first hour n been sobbing the last! My symptoms are all represented in it's description, but the fatigue (which may then be explained by constantly combating the symptoms) The dizzy/lightheaded/faint feeling, ringing in both ears, neck and chest pain, difficulty swallowing, and i have a "taught rope about to snap" feeling running from behind my ears down the sides of my neck to my chest whick gives me hope this SCM may be what plagues me too! I even see a probable cause there as it lists "forward head posture " as being a culprit and as a person who is now blind my head is most always down to try and look closely any everything with my tiny spot of light perception i have left in one eye! I have mentioned this taught rope feeling to EVERY" doctor i have seen (2xER, 2xGP, ENT, Internist, neurologist, cardiologist) as it was the first symptom i felt... by several months! And it has persisted throughout... All have told me it is insignificant! And, that there is nothing in the body that runs from behind the ears to the chest! I kid you not! The neurologist called that symptom a "red herring"! I had begun to believe i have gone mad! I see my new doctor Friday the 13th smile and you bet i'll be taking this information with me! I feel hopeful for the first time in so very long! ... Still sobbing... and so very hopeful! Thank you so much for sharing your experience that can potentially help others! :' )
    • rocksolid
      rocksolid jodie77731

      Posted

      Hi Jodie,

      I hope you found what you problem is. I have been dizzy for so long and I want to help as many people as I can. I hope you found the cause of your dizzness. Feel Better!

    • paula59
      paula59 rocksolid

      Posted

      I rocksolid - my next appointment with my headache neurologist has been cancelled by the hospital so I have just sent an email to my normal neurologist regarding SCM. I told him I have the symptoms and was in a car crash in 1973 and have a prolapsed disc at C3 or C4. I am now waiting on a reply and am excited. No one can get to the bottom of why my eye waters all the time and it drives me mad. All the head pain is exactly as on the SCM diagram. My dizziness is worse after I have been lying on the bed right on top of the SCM muscle in my head and neck. My SCM muscle has been tender since the car crash and I have just got used to it. I have scoliosis and one leg shorter than the other. My head is also in a forward position. My neck wont turn properly on one side and really hope this is the cause. I wonder how long it will take him to get back to me. So excited. xx
    • rocksolid
      rocksolid paula59

      Posted

      Great Paula, I'm excited for you. Keep us posted.
  • paula59
    paula59 teri94

    Posted

    Hi Teri -So sorry youve joined our dizzy club.  Has your GP sent you for a scan as they need to rule out anything serious.  Prob go on to see an ENT who could do some tests to see if its BPPV.  If not, then need a neurologist to help you.  Ive got a diagnosis of silent migraine but then my symptoms are not just dizziness but I have trouble with lighting in shops and offices and everything seems too bright for me.  I did have jumpy eyes but thats gone now by having botox.  I have low lying headaches which do turn into full migraines quite regularly.  Been on loads of medication for past two and a half years but nothing works as yet.  Pain behind eyes and bad sinuses too.  Obviously balance issues.  I wish there was some way they could make a proper diagnosis but I think they are guessing which is not good. There seems to be a lot of reasons for dizziness and it is totally debilitating.  Hard to function doing anything but funnily enough, trying to carry on seems to be the best thing to do.  Weve all been terrified and scared stiff and some of us have had panic attacks over it, including me.  Its so scarey.  Sorry to hear about your boyfriend.  Stress makes the dizziness much worse.  Try and look after yourself and relax.  The less stress, the better you will feel.  Keep going with the tests you need to rule stuff out.  Be careful you dont hurt yourself at the gym with the dizziness and dont stress over a bloke, your health is more important.  If in doubt eat chocolate !!  Were all here for each other.  xx
    • teri94
      teri94 paula59

      Posted

      Hi Paula!

      My GP hasn't sent me for a scan do you think i should call them on monday and ask for one? It scares me thinking it could be something quite serious sad I went to see a ENT and he did some tests but i was having a really good day and didnt feel very dizzy (typical) so i don't think he concluded anything from the tests only said to come back in 3 months for a balance test! which i thought was a ridiculous time to wait. Anyway I called the GP today and finally twisted their arm to send me for some VRT so hopefully that will help and i will maybe get a diagnosis. 

      Sorry to hear you're feeling badly too and I really hope they get to the bottom of it for you. What is your next step for you? Hope it gets sorted soon. You're right it really is debilitating and the more i dont function the worse i feel for just moping around with it. But when i do function i feel rubbish too. Aww thats really sweet of you thankyou, that made me smile. I am trying my best to not stress but this dizziness is such a vicious cycle as im sure you're aware of! You are completely right though my health is more important I need to concentrate on getting better! 

      Thankyou for your reply smile chocolate will definately help! xx

  • Terry6872737
    Terry6872737 teri94

    Posted

    Absent an impact to hearing, sounds like Vestibular Neuritis. An Otologist (Otoneurologist) is the best doctor to seek out for this condition. The vestibular therapy will help if you do in fact have a vestibular issue. Just need to take it slow. I would also suggest a low sodium diet to aid in reducing fluid on the inner ear. You may also need to be checked to rule out BPPV, which is easily resolved with an Epley maneuver. I am in month 11 of Vestibular Neuritis and still have some funny feelings in my head. It will get better, it just takes time and patience. You cannot control it and most doctors outside of an Otoneurologist know much about it. Anxiety comes along with it and greatly impacts recovery.
  • rocksolid
    rocksolid teri94

    Posted

    Don't freak out about it. If you give the dizzyness power then it will be worse. Yes it could be something bad....but the truth is that is true for a small % of people. most people find it is a simple issue and nothing to get freaked out about so please try to relax. Blood test can rule out some things. Have them check your magnesium, iron, B12, and Vitamin D which most people don't have enough of because we don't spend a lot of time in the sun.
    • marlene21102
      marlene21102 rocksolid

      Posted

      Rock,I believe you've found my answer to what's been going on ,I was amazed at what I've read  I get mAstoid swelling. Just behind one ear the worst tinnitus one  I've also got rhinitis  again since neck ache began .Nothing has ever helped to relieving ,and yes eye pain. Prominent over one eye  feels like it's in the eye at times comes and goes. And yes again to very watery eyes .Well I never  Im telling everyone I know with my self same symptoms to go look it up ,I've had a neck tumor removed just 2 years ago  just came up out of the blue  wondering now was that the cause .Going to look up exercises on You tube  then take this matter further .Thanks for this X
    • rocksolid
      rocksolid marlene21102

      Posted

      Hi Marlene,

      Hope your neck is the problem, then you can get it fixed. I had neck surgery about 4 yrs ago to remove  a tumor also, lol. Glad you might have a solution. I just had some cortazone shots in my neck today so we will see if it gets better.

    • paula59
      paula59 marlene21102

      Posted

      Hi Marlene I read SCM too and thats what I think mine is.  Which it would be good if it is cos there seems to be a cure.  Ive had two not so bad days today.  Thanks to Rocksolid for enlightening us.  x
    • marlene21102
      marlene21102 paula59

      Posted

      As soon as I read it  I just knew this has been my trouble ,down to the last dot ,It's seeing Dr after Dr ,repeating and repeating same symptoms ,I've given up till I saw what Rock solid placed .Feels like we've all had same problem going on to some description .Its been a miserable time all round .

        Stress from having it. Cripples you even more .thats what I've found .

    • paula59
      paula59 marlene21102

      Posted

      But why dont GPs know about this.  And the neuro surgeon I saw with my neck scan, he told me I had a protruding disc at C3 or 4.  I even have trouble swallowing and Im putting off going to the dentist cos my teeth hurt.  My god.  Ive been at the eye hospital asking why my left eye wont stop watering,  Why dont ENT and neurologists know about this.  Now Im really annoyed.  Two and a half years and given up a job I loved.  If it is this, Ill be overjoyed but livid at the same time.
    • marlene21102
      marlene21102 paula59

      Posted

      Coincidence again ,I get the swallowing since having tumor removed ,thought it was due to that,maybe now not,when I had a neck scan finally 2 years ago ,it showed 2 neck bones out of place C whatever's  had these put back in. My that was painful ,but I thought bit of pain to get balance back. Be worth the pain ,but no nothing balance still not back .Ive had eye tests ,always being told my eyes are okay no pers riot ion change ,eye pressure fine  told it's not my eyes every time ,had MRI for my tinnitus ,no tumor attached to that ,that was prior to getting this balance .So like us all it had to be something else doing it ,said from the go my neck had to do with it .Ive always believed the answer was out there. Just needed one person to have found it .

        So to sum it up for us all with these probs if all the same. What a waste of the years we've given over to it  as you said you had to give up a good job ,it has impacted on our lives in so many ways ,medical people need to get switched on to symptoms. Not just throw these Benzos at patients obvious thAts not going to solve it period ,and all the while we're left looking as you have to ,why because we're living with this 24/7 and going round in circles 

         Let's hope this is the best start to all of us getting on the road back .Im looking up on You tube  get as much info I can 

        My Maxi surgeon knew I had tinnitus ? Plus rhinitis ,Maybe now show this up to ENT 's out there as possible cause  when people raise all this up  even for them to just considering this as a cause ,not to just pooh,pooh and send you on your way ,can just shorten the waiting ENT list .What a right old mess I say Paula .

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