Please I need help!! Labrinthitis?

Posted , 12 users are following.

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 😊✌️

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  • Posted

    Hi Tasha,  balance problems affect every aspect of our lives.  Whatever the diagnosis.  I lost count of how many doctors you've seen but it seems none have been able to make a difference.  You say you have 3 spots on your brain, what's caused them, what are they?  Surely this must be having some overall effect combined with the fluid in your ears.  If they can't help you, and not many of us are getting much help to be honest, cos i don't think even the so called experts know what to do with us, then you need to find a way to help yourself.  That involves getting to know what 'triggers' make you dizziness worse.  I know mine are tiredness, emotional upset, and dehydration.  Now i have to pace myself and try not to over stress my body, cos our bodies are trying to tell us what we need to know and I think mine is saying that I need to  take it easy, keep calm, breathe deeply, don't panic, avoid triggers as much as is practically possible, cos likewise supermarkets leave me in a spin, so i try to go round them slowly and avoid too much looking up and looking down, not so easy when everything is on shelves.  Sorry i can't offer any thing more than this but if the doctors don't know and the meds don't work then I have decided that i have to do everything i can to try and help myself.  I let others know at work that i have a problem that affects my balance and on occasions i may not be up to speed.  I have had this problem since September 2013.  Went to bed fine and woke up and the world was upside down.  Whatever you do try to keep positive.  Some people have said that antidepressants have helped them with the anxiety.  The acute stage of my condition in the beginning meant i couldn't work for a month as i was all over the place and some morning crawling around on the floor cos' i couldn't stand up  and my vision was fluctuating and i felt spaced out and not quite in the room.  Everything seemed to be whizzing around me whilst i was in the centre of some kind of storm.  Now it has all quietened down to a general feeling of imbalance which is worse or better or any particular day but always in the background.   Whatever you do, hang in there, it can get better but it does take time.    All best wishes Anne. 
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    • Posted

      Thanks so much for your reply. Not really any explanation for the spots on my brain? Could've been there front a car accident about 15 years ago I have another one in May.

      This is the most awful thing. I just want to be better!! I miss life.

      I think tiredness and looking at my phone is bad for me. Also when I'm due my monthlies? Sitting for long periods of time like when I have tea with my nan? Arguments and just general stress? Being hot?

      Thankyou again for your reply I just need some support? I don't have much family and they live far away. Also my husband works away. So avoiding things like shopping I can't do?

      I just hope for healing soon!

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    • Posted

      You're most welcome Tasha.  I did also hope for healing soon and was thinking that everything would resolve itself and i had a timescale of initially 3 months.  Over a year later i am no longer placing any timescale on this condition but i do believe that our bodies are trying to heal themselves and were it not for this fact things would be considerably worse.  I always look at it as if i were a computer that something has gone wrong on my hard drive.  Likewise i had a head injury 18 years ago which left me with partial deafness and permanent tinnitus in my left ear.  They now think that it also has caused this vertigo but i hadnt' noticed it until it got this bad.  It doesn't help if you are alone a lot but it does help me to know that i am not completely alone and there are others on this website who know exactly what i am talking about because we share the condition.  Otherwise we would be all alone if we were the only one that had it.  II have said to my husband to look at me from the outside i look normal but inside i am all over the place and sometimes it is really exhausting.  So be gentle with yourself and patient and like it seems most people who post on here things do get better slowly, if not completely resolved,  but it does take time.  Take care of yourself xxx
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    • Posted

      Hi Anne see no improvement for us ,I'm all over the shop today ,my tinnitus is low. But my what a bad head ,ihate the low ear days ,makes my balance so much the greater .always high anxiety as today because of it. Plus I get IBS symptoms ,as today .

         Today through the mail I've got the York test (full one ) look to see if it is allergy related doing this  as I e got this rhinitis and eczema going  had the basic couple years ago at Hsp  that was no help only slight raised up 2 .so that was of no use  after I had that head virus  I asked my Dr  has this virus left me with allergies ,non commital to me and what I asked .

         I then wonderered menopause to it all  as I thought I'd gone through that. But then told some females can go through a second ,as I had hot flushes back again ,placed me on some non HRT cream. That didn't help either 

           Now I'm back to allergies ,as was my first thinking. Wish I'd followed through with that gut feeling I had. will get this private allergy test off. Then go from that  is it Gluten etc. That gives off these symptoms also ,including anxiety ,always wondered why that's never left me since I got head virus .

       You said to your husband exactly what I did. I may look okay on outside,even again today when that test came .

           So here we are still in the same situation. It just seems never to end,and new joining these sites every blooming day looking for the same answers to it .

        No word on Darren ,wonder how he's doing with those varifocals  hope he pops in and tell us.

        Gillian on yesterday ,had another MRI and saw physio  not holding her breath either that will help her out ,she was on site yesterday .

        Think of you Anne xxxx

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    • Posted

      Thanks Marlene, i'm on a steroid nasal spray now.  My ears, eyes, nose and throat are bunged up.  The menopause never finishes, i had a patient in her 80's who told me so, she was sitll having hot flushes. She made me laugh cos' i'd asked 'when does it finish?'.  Speak soon, big hugs to you too. xxx
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    • Posted

      Hi Tasha, listen up hun. We had the same EXACT life. I suffered from vertigo since i was child, then not so much as i got older, i got sick from a stomach bug or some crap in November 2013, woke up extremely lightheaded and off balance. Went to my doc who told me it was due to the virus i had. Weeks later no virus yet i was still lightheaded and dizzy, couldn't concentrate, ny anxiety spiked up again. I was terrified. Went back to another doctor, drew blood and sent me to ent and neuro. Ent told me it wasnt vertigo, i was devastated, said to myself thats it, im dying. My neuro sent me to get a ENG i believe it is called cant remember it. Found out i had an imbalance in my left ear, and sent me to vestibular therapy, but in my mind I said to myself, imbalance and vertigo ok, but vertigo is not 24/7 and i literally felt sick 24/7 so i was paranoid, i got laid off, couldn't walk a block without feeling like i was gonna pass out, gained 30 pounds, my life was over to me and i cried every singke night. Saw another neuro who said it was anxiety and due to my past relationship, in his words delayed reaction to my brothers death who passed away 2 years prior and my relationship during that time, which I was pregnant at the time, tried to put me on anti depressants which I didn't take. I literally saw 6 or 7 different doctors, MRI Blood work, everythingggg possible, cardiologist who said everything was normal, at 25 going through all of this with a 2 year old..insane...2 years later, 27 and still lightheaded but i learned how to deal with it alittle, i go to work, feel dizzy alot even flushes where i feel im going to pass out, met an awesome Neurologist who diagnosed me with Vestibular neuritis. He said i have inner ear nerve damage, unfortunately it doesnt heal but the brain can learnto adjust to it, he put me on pills to help with the symptoms which i dont take because I hateee antidepressants but they can be used for these things. Maybe i should take them but im stubborn. Well now im waiting for a VNG test which will rule out some other things. I know its extremely hard to kive with this, take it from me, dominican girl who loves to dance spin, go out, and do so much which i have to limit myself, cant over stress, i have to sleep atleast 7 hours or if not my body would be off the next day, my eyes feel weird even my body, legs my arms, so i advise you to go to look for a neuro,, if you were in NY i would recommend my doctor to you, he is great!, good luck and i hope you can have some ease knowing you arent alone.

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    • Posted

      Hi Anne ,you've had that for some time ,see those sprays hurt me more .

         I've looked up Gluten free society site that gives off a list of our symptoms 

        Hormone,Balance/ Tinnitus ,Acid reflux  IBS  Thyroid etc all coming from Gluten allergy,Gluten intolerance  Gluten sensitivity  .

       Found it interesting  this Dr Peter Osborne explained all 3 and how they behave  Maybe this can be the bottom line for why some of us never feel better. And can't get back. All down to our food intake .Those of us with BP probs he says Cyclical Hypotension Hormones .all from gluten .i wasent aware you get Gluten arthritis is that the neck ache we seem to get with this balance ? The first he mentions was Entercolitis syndrome .

        That was my homework today on our problem ,my cousin just left had a good chat  she's got few of these probs ,got the balance  and. Gastro ,and IBS hence we got on with this .Go check this site out Anne .still think it's going to be us that sorts this all out .

        I've got a book on meno ,that lady you spoke to wasent wrong. One I read was still on HRT at 85 yrs ,and her 59yr old female Dr reckons women should be on hormone replacement until they die ,as she intends to be .

         What a continual mess we stay in .stay warm Anne xxxx

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    • Posted

      thaks Marlene, i will check it out.  Yes, what a mess.  I had a chat with my husband yesterday.  He said when he saw me leaving for work yesterday morning he realised how unwell i looked.  He said he thinks it's time i cut down my hours and then retire.  I am working towards retiring next year now as it is all taking its toll i guess.  I said thanks for the feedback because sometimes i don't realise how all this is having such an effect on me overall and keep on keeping on until i drop is perhaps not the best way to deal with it and i have to listen to someone who knows how it is effecting me rather than just relying on being used to feeling this way for so long and just getting use to it.

      Perhaps it is for the best as i was due to retire yesterday and then postponed it at the last minute.

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    • Posted

      Anne ,yes I think there comes a time when you have to look after you ,have to hold your hands up ,and just quit .As my husband always say ,no pockets in a shroud ,you know what I mean .We keep going and going ,and it detrimental to our over all health ,and this has all taken its toll. Glad your husband noticed how you were looking ,yes it's good to get feed back ,me and my cousin do that ,love her to chat to ,and it's visa versa ( should have been my sister ) so we're close that's our bonus .

          So next year your be officially retired ,that year will go quick. Never know Anne all this will be gone by that time .then sit back and relax and enjoy the long awaited retirement .

        Have a look at that gluten ,see what you make of it ,be glad to get back the tests Im sending off .If anything shows up. I can make the changes nessasary .My aunt and cousin and me blame foods we eat being sprayed and we then eat ,think more are getting that thinking. 

        Upwards and onwards .We can beat this  just keep at it I say ,answers out there for sure .Look how many of us alone working on it.No Dr in sight .xxx

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    • Posted

      thanks Marlen, let me know how you get on with your test.  I've had a look at the gluten site.  Have a colleague at work who is gluten free as she has been diagnosed. 

      Well if we can't beat this it won't be from not trying hey? smile

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    • Posted

      I just want to say that you two ladies, you and Marlene, have the most positive attitude of anyone I have ever seen.  You amaze me in how long you have been dealing with this and you always keep looking forward.  You are an inspiration to this forum!!
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    • Posted

      Hi Terry 💝 thank you kind words they are .like Anne and others. Got to keep looking ,not give up ,the clues lies with us .Never let the medical people fob you off .Its not going to cut it ,we still have these days to get through ,not them .I have never spent so much time sitting ,all due to this going on ,messes with your whole life ,as you know to well yourself .

          So if we all do what we can ourselves,research what we hear  and ask questions ,what does our inner voice tell us ,we need to be doing .X 

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  • Posted

    Hi Tasha. How awful your story is. I too have been suffering from suspected labyrinthitis. 10 weeks ago I woke up normal. Started to have intermittent attacks of vertigo ie walls spinning & over the course of the day my right hearing started to fade & become distorted. So far I've been diagnosed with suspected middle ear infection, suspected labyrinthistis & last week sudden hearing loss, no hope of it coming back. I've had all sorts of meds an mri last week. I like you have been saying for 10 weeks its to do with my ear, unfortunately no one listened & now it would seem its to late to restore my hearing. I'm due back at hospital on 8th April to discuss mri & other tests. On top of this the hospital as lost my notes!! I'm also waiting for an hearing aid referral approx 2 months. So my life is in limbo, cant work, cant sleep tinnitus drives me bonkers, cant socialize cos I cant hear properly & what I can hear hurts my damaged ear. I'm now looking at acupuncture, as I'm desperate to get my life back & will try anything. I hope you get sorted. Take care x
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