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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
Terry6872737 tasha.
Posted
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 tasha.
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gillian76726 tasha.
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kathleen65757 tasha.
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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 tasha.
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paula59 tasha.
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daniel12524 tasha.
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