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Old 09-29-2008, 02:25 PM   #1
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lisa2211 HB User
still dizzy, what is the answer?

Hi
This is the first time I have posted a message on this site, or any for that matter!
In desperation for answers to my symptoms I found this site and your story by chance and cried all the way through reading it.. I dont know if I was elated to find fellow sufferers or sad to know that so many others suffer, without diagnosis, these dibilitating symptoms. At least I no longer feel like a complete hypochondriac basket case!
My story? I am 40 years old and have suffered with my ears since childhood,recurrent infections,tinitus and poor hearing. After many years of pain and treatments I had an infection so severe that I ended up having major surgery, a partial mastoidectomy,(basically they cut into the back of my ear and drilled and sucked out all of the infected tissue from the bones in the mastiod cavity in the inner ear).
My recovery was slow and painful and I was left with even poorer hearing, ongoing dizziness and a very dodgy looking shaved head on one side!! Needless to say I didnt go out much for several months.
Then after a few more years of regular hospital visits for treatment for infections, dizziness and wobbly vision I was told,after exploritory surgery,that there was an infected mass in the mastoid cavity and I needed a total mastoidectomy. I had the surgery,the stitches,the pain the shaved head and the rehab physio all over again, nice!
Since then I have lived with symptoms on a daily basis. Last year I woke up and couldnt get out of bed, as I sat up the whole room seemed to spin and I felt sick,this went on and worsend over the next few days,I saw my GP who diagnosed suspected Meniers Syndrome,got anti biotics and travel sickness tabs these had little effect and the symptoms got worse,I became more scared and convinced it was serious. I was eventually referred to ENT for all the tests and was told I had BPPV and given excercises. The 'episode' as I now understand it, lasted several weeks and was horrible. I had dizziness, nausea, flickering vision,sinus pain,congestion,headaches and pain behind my eyes. I seemed to live on pain killers,sudafed and Diazipam. I rarely went out, couldnt drive, which meant I couldnt work as I am a driving instructor, and became very depressed as there seemed to be few answers, little help and no cure. I have since had two more episodes in the last year each lasting several weeks I have had many consultations and more symptoms including neck pain, hearing loss and joint pain. The most recent diagnosis was Laberynthitis and I am now taking Betahistine Hydrochloride. I too have tried many avenues for help,pain relief and diagnosis. I have seen chiropractors had massage and physio, I've been referred to neurology, rheumatolgy and ent, and I've had bone scans, CT and MRI and still nothing is conclusive! So until I can find a genious doctor and a cast iron diagnosis with a miracle cure this is me sitting/laying here living day to day as best I can. x
Yours wobbly and forgetful
lisa2211

 
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Old 04-18-2010, 04:52 AM   #2
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gjoy HB Usergjoy HB User
Re: still dizzy, what is the answer?

Hi Lisa2211

Was wondering how you are going these days? Did you find a solution to your problems?

Hope so

Gjoy

Last edited by gjoy; 04-18-2010 at 04:52 AM.

 
Old 04-20-2010, 08:13 PM   #3
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Giovanni Miceli HB User
Re: still dizzy, what is the answer?

I am going on 3 months with my dizziness. It started with Vertigo for a month, then a constant off-balance feeling. Now, I have "bouncy vision" when I walk. It pisses me off that all these Doctors can do is shrug their shoulders and tell you cool names like "Labrynthitis, Vestibular Neoritis, Meneiers" Well if you know that damn name, where is the relief?

 
Old 04-23-2010, 05:34 PM   #4
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alborde HB User
Re: still dizzy, what is the answer?

Quote:
Originally Posted by Giovanni Miceli View Post
I am going on 3 months with my dizziness. It started with Vertigo for a month, then a constant off-balance feeling. Now, I have "bouncy vision" when I walk. It pisses me off that all these Doctors can do is shrug their shoulders and tell you cool names like "Labrynthitis, Vestibular Neoritis, Meneiers" Well if you know that damn name, where is the relief?
Did any of these doctors prescribe vestibular rehabilitation therapy?
There are specific exercises that you can do that can help!

 
Old 04-23-2010, 08:30 PM   #5
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Giovanni Miceli HB User
Re: still dizzy, what is the answer?

No, nothing. I have been going to the gym, riding a bike which is very difficult, now. I practice standing on one foot with eyes closed, etc. I figure what more could VTR do for me, that I can't do for myself. I'm not paying some schmuck $500 bucks to tell me nothing.

I'm sick of it. I'm getting better, as I'm sure most will on this board, but damn it, it's frustrating. One minute you're living a normal life, than BAM, this stuff. I still can't grasp it all. I'm a screenwriter and imagine having to go into a 'pitch meeting' off-balance. It isn't fun.

 
Old 04-24-2010, 04:13 AM   #6
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gjoy HB Usergjoy HB User
Re: still dizzy, what is the answer?

hi Giovanni

It is tough being not well but realise everyone who uses this site is unwell in one way or another. 3 months is not long when some people have been ill for years. I have dizziness probs also. The latest thing is whenever I stand still feeling like I am falling backwards, like I have a string on the back of my head someone is pulling. I had to hold onto the counter in the shop today to keep myself upright. Glad you are getting better. It is hard to be patient but spare a thought for all the long term sickies out there.

Gjoy

 
Old 04-24-2010, 11:15 AM   #7
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Giovanni Miceli HB User
Re: still dizzy, what is the answer?

My prayers are out to all of you. I hope you get better (and you will) but I guess it's like you said, it takes time.

 
Old 04-24-2010, 11:32 PM   #8
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gjoy HB Usergjoy HB User
Re: still dizzy, what is the answer?

Thanks for your reply Giovanni,

I have found the medical profession very unhelpful. It is good that you have a diagnosis and can help yourself. I have had luck in the past going to a naturopath with ear problems. Maybe this will be a better option.

Good luck,

Gjoy

 
Old 04-25-2010, 11:38 AM   #9
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Giovanni Miceli HB User
Re: still dizzy, what is the answer?

Gjoy

Thanks. It's like there is so many medications for the inner ear. A person could literally go crazy trying them all out. I have been on a water pill and watching my sodium, but it's all a slow recovery, as I'm sure you're aware of.

It's crazy that there is so much known about the inner ear, yet, nothing that can be done to help it. A person may go to 5 doctors before coming close to any help. One day you're healthy, then the next you're living in spinning world of hell.

I think most people should understand that recovery is SLOW, SLOW, SLOW, take an inch and be happy, because those inches will eventually equal a MILE...

 
Old 04-26-2010, 03:42 AM   #10
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gjoy HB Usergjoy HB User
Re: still dizzy, what is the answer?

Giovanni

I found this quotation very helpful when I was at my worst in December

When you have gone so far you can't manage one more step, then you've gone just half the distance of which you are capable.

Maybe these problems are a trial to see what we're really made of. So keep strong. It has worked for me.

Gjoy

Last edited by gjoy; 04-26-2010 at 03:42 AM.

 
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