1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Please I need help!! Labrinthitis?

Posted , 12 users are following.

tasha.
tasha.

Hey everyone just wanted to write and see if you guys can help me make sense of this whole crappy situation! I'm from a small town in North Queensland. We have a very small amount of doctors and a very small hospital here. I have pretty much self diagnosed with Labrinthitis or vestibular neurotis Mid October 2014 I was home for the day, been home for two days from holiday where we went to theme parks (with a lot of screaming) swimming and flying home. When I fly it feels as if my head will explode, I thought this was normal .... Apparently not? Anyways the day I was home I had two cups of coffee and no breakfast ( I don't normally drink coffee) I was sitting at my computer desk when a wave of dizziness took over me. I panicked .... Then tried to calm down so had a shower. Then again massive wave of dizziness .... Whilst in the shower. I got myself dressed and called my friend to take me to the hospital. By the time I got there I was feeling panicky but not so dizzy. So they dismissed me with just having "anxiety" what followed over the next 3 months was insane!! My symptoms of dizziness unbalance was not even listened to I suppose they just saw me as scared freaking out crying. After doctor visit after doctor visit after doctor visit I was told to take benzos and calm down its just anxiety. Go see a phsycologist its just anxiety and panic. Got do yoga. Change your diet. Get counselling. It's your past its your marriage its your kids its your life. During that time I was admitted to hospital given a sleeping pill ( that made me so much worse) and locked away for two nights where no one really bothered. I was given blood tests and a chest X-ray? It was complete mayhem!! I lost 14 kilos I couldn't eat I couldn't sleep I thought I was going crazy. During that time I would just curl up in a ball and wait to die. I still now think I'm just going to fall over and die. Things kind of calmed down and I realised if this is the way I am now I need to learn to live with it. So back to see my phsyc and councillor and work on this! Then I stopped panicking and started forcing myself to eat porridge. That's all I could eat. I started to carry on with life trying to ignore the dizziness only freaking out when it happened instead of 24/7. After a while I went back to my doctor and said look I'm on top of this anxiety stuff but I still feel dizzy. Please check my blood pressure or my ears please there must be something else. Blood pressure fine but when she checked my ears I had fluid bulging in my right eardrum. It was an awesome moment where I thought finally something!! She gave me nasal apart and said this will fix it. Since then I have seen 4 other doctors and another hospital visit (it's been another 2 months) .... Some doctors can see it some doctors can't some refuse to look they have given me so many pills from steroids to cold and flu to antidepressants to Valium and vertigo drugs. I have had a hearing test witch was good. An mri ( 2 hours drive away and $250.00) not so good with 3 insignificant spots on my brain. Heart tests blood tests pap smears urine tests and finally a refferel to a ent. I thought this would finally be my saviour.! Nope he had a quick look in my ears he was a young buck who was rude even laughed at me when I suggested Labrinthitis or vestibular he said I would have been sicker and that he thought it was migraines .. I left there absolutely broken gutted sobbing and out of pocket another $250.00 and a two hour drive home. I think at that moment I thought about dying? I couldn't live the rest of my life like this! I honestly believe it's an ear problem.

I don't no what to do anymore. This has changed my whole life. I was an outgoing fun happy friendly mother of 3 beautiful girls. This has changed my diet my sleep pattern my whole life!!

I'm now a home body miserable. I cry a lot I don't really go anywhere I can't work I don't socialise and I am petrified of the shopping centre as it makes me worse. I feel as if I'm a drain to my husband my friends and my kids. I feel lost. Stuck scared and ruined. I feel defeated deflated.

Some things that help me not feel like this are driving and swimming. I feel that when I'm not being still I can't feel the dizziness.

I want to no how others feel? Does your arms and legs seem to work differently your eyes? Does your head feel like it's just not working? Like a tick goes off in your brain like it just stops for a second? How have you helped people understand how you feel? What makes you worse.? Is there anything else I can do.

Sorry about the long rant and thank you so much if you can help 😊✌️

1 like, 28 replies

28 Replies

Prev
  • Terry6872737
    Terry6872737 tasha.

    Posted

    The medical community does not offer mush help in diagnosing or dealing with this issue.  I have been suffering from Vestibulat Neuritis for almost a year as well.  The only difference in VN and Labrynthitis is that Labs is associated with hearing loss but, both are treated the same way.  The best doctor to identify and help deal with this issue is an Otologist (Neuro-otologist, Oto-neurologist) as they only deal with inner ear issues.  I had many of the same issues that you describe early on, especially the feeling that you were going crazy.  The feeling at times was so intense I often felt as if I couldn't tolerate it.  Those feelings lasted for 2 months.  I initially was on Xanax for 6 or so weeks when this first started but, a Neurologist told me that the benzo would delay the brain's compensation for the VN.  I don't know if you ever totally get over this condition as I at a year feel that I may be at 90% - 95% of the person that I once was.  One of the hardest things, as others have mentioned, is that I look ok but, as you know, I don't feel ok.  I have to push myself every day still.  Thinhs are not as they used to be and I know that some of that is this condition being in the  back of my mind.  Staying busy helps me to keep it off of my mind during those times and sometimes I do actually feel that I am well.  I think that once you experience this anxiety always makes you fear that it will return full force.

    The issue of the fluid in your middle ear is cause for concern.  That in itself would cause the issues that you have had.  I know a guy here that had that issue and had to have the fluid drained to get rid of his issues.  Most of us have been passed off as having anxiety and not a legitimate illness.  I went through 2 months of Vestibular Rehabilitation Therapy with a therapist and have kept the exercises up for the remainder of time on my own.  They seem to help me but, in the beginning they feel like they are doing more harm than good.  One issue thaty I also had was BPPV.  That was resolved quickly with what is called an Epley Manuever.  BPPV usually shows up secondary to Nueritis.  I also take a low dose aaspirin each day and I am on a restricted sodium diet (2000mg per day).  I do not smoke, cut out alcohol and most caffeine.  Sinus issues bother me as well so that aggrivates the Neuritis also.

    After 7 months I began to be able to do most of what I wanted and oddly as you mentioned I feel most comfortable driving.  My balance returned probably at month 7 or 8 and now I just have head ssensations that feels at times that my eyes and head movements are not in sync.  That is minor though.  I had a bouncing head feeling early on but that went away after 6 or 7 months as well.

    I beleive that we can get better, and most do.  I also believe, as my Otologist told me, as with any injury to a body part or function, you never regain 100%.  I keep working though in hopes that it will get back to 100%.

    I know that in a small area you may be limited as to a Otologist.  Self diagnosis though it a gamble as there are so many issues that can cause the symptoms that we all share.  A SSRI (Selective Serrotonin Reuptake Inhibitor) is a good help also to deal with the anxiety as it does not impact compensation of the brain to adjust to the mixed signals form the balance system and the eyes.

    Stay positive and keep working and you will get better with time.  As I have said before, recovery from this is measured in weeks and months, not days.  Keep a journal so that you can see the progress that you make.    

  • gillian76726
    gillian76726 tasha.

    Posted

    first,y Tasha I have to ask do you have any  medical,insurance over there.  when I lived there (Sydneyh i used to belong to one I cannot remember name of now, because if you are going to see the right people you will need it.  what is the situation. For people who don,t have any?  Basically ENTIRE.s are a dime a dozen, as are Audiologists and they just do not have the training for vestibular problems, so in their ignorance will either tell you all sorts or fob you off! Yo need  to see Neuro  Otologist (it took me a long time to realise this).  You may have BPPV, where crystals in your system are screwing up your balance, in which case certain exercises can really help this).  Google BPPV,  then Exercises for BPPV, as you can do these at home, there are videos,on YouTube etc etc so it makes it easy.  But you do need to see a Specialist. where are you nearest to in QLD
  • gillian76726
    gillian76726 tasha.

    Posted

    Continuing on o. As this page suddenly stopped working !!  Terry also says much the same and he,s up,on all this too.  Try that Eply maneuver as if you have fluid it may help, but whenever there,s fluid an proper specialist will take that seriously and do something about it.  I found that ll the drugs didn,t help me, or in fact made it worse.  .cut out diary if you can as that causes congestion and makes it worse I find. NAlso chec out VEDA,website, who,also have a Facebook page, very informative and helpful, and you can ask stuff on there too. they,re American. Good luck and keep us i formed as to how you get on. X
  • kathleen65757
    kathleen65757 tasha.

    Posted

    So sorry Tasha that this has knocked you so hard. I am in Australia too but near Melbourne where there are top hospitals and doctors. On our way driving home from Canberra I woke at five am in Lakes Entrance to go to the toilet, sat up in bed ready to stand up and just flopped backwards onto the bed. I tried again a couple of times with the same result. I needed my husband to hold me tightly and get me to toilet and then get us home to Mornington on Mornington Peninsula South of Melbourne.

    I was totally reliant on him for the next few days. I called nurse on call who called an ambulance to come to check me out which they did. I was not taken to hospital but went down to a local doctor for prochlorperazines who said it was viral and would go in three days. It did not as you can guess.

    I used a shower chair with handles to help me get round the house. My own GP was not available and I am still waiting to see her.

    I then bought a Rollator which has given me some comfort. 

    With a week and half to go to see my own GP I decided to go to the brand new state of the art Frankston ER. This turned out to be a good decision.

    I spent the day there being thoroughly assessed. I had a brain scan in a new MRI open type machine. This was clear.

    I have been referred to a neurology outpatients clinic from this week. 

    I continue to use my Rollator which was given the stamp of approval by the ER consultant and physio lady who also saw me in the ER.

    I see my own GP in just over a week and know she will be an excellent source of help too. 

    It is scary but my children are grown up so I am not in the position you are. I am 70 years old not a young mum so I feel for you.

  • kathleen65757
    kathleen65757 tasha.

    Posted

    Also, travelling seems to have some connection because I am unable to go very much in the car. I was travelling when it happened and that seemed important to the ambo who came. Part of the holiday drive was down a very windy road like one s after another and an hour like that. It seems to be the crystals in the inner ear are displaced and causes havoc for us.
  • paula59
    paula59 tasha.

    Posted

    Hi Tasha - Sorry to hear you are suffering.  Welcome to our dizzy site.  The others already know but I had the same as you, not quite as many tests in the UK, but went thru GP, MRI scan, loads of ENT, Neuro surgeon, and finally two neurologists,  Been dizzy now for two and a half years.  Got a diagnosis after a year and apparently Ive got silent migraine.  I did wonder if this was right or not, but the fact that it effects my eyes so much and lighting, I think it must be correct.  As Anne said, shopping can be a nightmare, the lighting can be horrendous.  Ive always had bad sinuses, perennial rhinitis, and allergies.  Sometimes i get the giant headache on the odd occasion.  The light on my phone and PC and TV affects me.  My eyes were jumping about b ut had botox and that stopped.  One thing Ive not mentioned before though, Im up to 9 years now of hot flushes.  Between being boiling hot all the time and the dizzziness, my two worse things - Im surprised Ive not gone mad. I had one year of HRT which was amazing, but due to cancer risk, they made me come off it and strangely enough, this dizziness started.  I have begged to go back on it but they wont let me.  Im so interested to see if I did, if this would go.  At first was terrified and thought I had MS and ended up with two panic attacks.  Now managed to calm down and like the others, try and live with it.  Had a very bad week last week due to small car crash but its improved this weekend.  Still there though.  One eye pours too.  That drives me mad.  I did retire but after 6 weeks of being much worse, I found myself another job which seems to take my mind off it.  I now work four days a week and Im 61.  I hope you feel better soon.  Anxiety does make it worse, try and calm down - were all on this giant roundabout together.  Always here to help.  Much love to all my dizzy friends. xx
  • daniel12524
    daniel12524 tasha.

    Posted

    You have the answer you feel better when swimming and driving? You need to find more thing to make you feel better we are all feeling the same way and have had terrible thoughts of what is going on or what is coming.the truth to the matter is we are not dying and need to stay focused and keep doing exercises and keep moving forward but one thing you cannot do is curl up in a ball and get depressed the best thing for me was to get out of bed as terrible as I felt and how weird I felt and anxiety built up who cares how pthers look at ou or if you feel others are looking at you.i truly believe the longer you don't move forward the longer the process. Look at it like re training your body to do what is normal to you. .
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.