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Old 08-20-2012, 11:33 AM   #1
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Strange symptoms, waxing and waning...

About 4 weeks ago, I experienced some dizziness at work and then when I was playing cards in a pub. The dizziness was like a swaying left and right kind of dizziness and my heart began pounding. Both these episodes lasted a few minutes.

The following day I woke up with a foggy head asif I was coming down with a cold and a churning stomache and what I would describe as a swaying on a boat sensation. Putting this down to a viral infection I spent the next few days wobbly but after the weekend passed and I still felt no better I began to wonder what was happening. Anyway I ended up going to the doctor who said it was probably labrynthitis, gave me some Stemcil and I went on my way.

The balance and swaying sensation began to get worse to a point I was unable to walk without holding onto objects in my way - reminded me of a time I awoke after been on a boat for 24 hours and asif I was still staggering about on the ship deck, although this was much worse.

Spending the next 4-5 days pretty much bed ridden, I began to feel slightly better. I had several days where I awoke and the symptoms where "managable" to the point I was able to get around the house.

Anyway from this point (coming up 3 weeks now) It seems like I am having days where I feel I am improving then waking up the next day feeling awful again. I have not been able to sleep anymore than a maximum of 6 hours and every morning I am awaking at 3-4am unable to sleep. I have been experiencing what I would describe as EXTREME bouts of anxiety where my whole body just locks up and I cannot relax - this makes the balance worse.
I have had a few days where I have been able to get outside the house, driving in particular is fine and I feel quite "normal" during this time.

From the research I have done so far on labrynthitis, it seems people are stuck with these symptoms for many many months and many dont go away. Does the compensation peroid for this illness feel like a waxing and waning type of process with random good and bad days? Every website seems to quote entirely different recovery times. Does my recovery sound normal or has my brain not compensated for the damage? Is it possible for the virus to still remain after three weeks?

Any help appreciated.

 
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Old 08-21-2012, 12:19 PM   #2
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Re: Strange symptoms, waxing and waning...

Quote:
Originally Posted by jimmyc123 View Post
About 4 weeks ago, I experienced some dizziness at work and then when I was playing cards in a pub. The dizziness was like a swaying left and right kind of dizziness and my heart began pounding. Both these episodes lasted a few minutes.

The following day I woke up with a foggy head asif I was coming down with a cold and a churning stomache and what I would describe as a swaying on a boat sensation. Putting this down to a viral infection I spent the next few days wobbly but after the weekend passed and I still felt no better I began to wonder what was happening. Anyway I ended up going to the doctor who said it was probably labrynthitis, gave me some Stemcil and I went on my way.

The balance and swaying sensation began to get worse to a point I was unable to walk without holding onto objects in my way - reminded me of a time I awoke after been on a boat for 24 hours and asif I was still staggering about on the ship deck, although this was much worse.

Spending the next 4-5 days pretty much bed ridden, I began to feel slightly better. I had several days where I awoke and the symptoms where "managable" to the point I was able to get around the house.

Anyway from this point (coming up 3 weeks now) It seems like I am having days where I feel I am improving then waking up the next day feeling awful again. I have not been able to sleep anymore than a maximum of 6 hours and every morning I am awaking at 3-4am unable to sleep. I have been experiencing what I would describe as EXTREME bouts of anxiety where my whole body just locks up and I cannot relax - this makes the balance worse.
I have had a few days where I have been able to get outside the house, driving in particular is fine and I feel quite "normal" during this time.

From the research I have done so far on labrynthitis, it seems people are stuck with these symptoms for many many months and many dont go away. Does the compensation peroid for this illness feel like a waxing and waning type of process with random good and bad days? Every website seems to quote entirely different recovery times. Does my recovery sound normal or has my brain not compensated for the damage? Is it possible for the virus to still remain after three weeks?

Any help appreciated.
Hi,

The symptoms you mention are definitely those of Labyrinthitis. I have the same exact symtoms, and it is at times terrifying! You get my sympathy! I know how horrible this really is, and how it affects your life in many aspects.

It is possible to experience the symptoms and be fighting the virus for up to 8 weeks I believe, after this, you will start to either compensate for the damage caused, or in some unfortunate cases, it will require a set of excersises you will get from a specialist. These as you've probably seen are known as Vestibular Rehabilitation excersises, and they help your brain and eyes to learn a new pattern and calculation, but very soon now you should start to feel slightly better, if not almost 100%. If you dont feel good after this, it could be best to go to the doctor who diagnosed you and mentioning you still havent compensated from the labyrithitis, as you still feel unsteady on your feet and still get vertigo at times.

It definitely comes in steps, and this is totally normal, as it could be your body trying to compensate for the damage already. I've had mine now for about 4-6 weeks, and its still there for me most days, but others I may feel like I could get up and do things more than I could normally on a bad day. I went into a shop just the other day, and was nearly falling into the shelves! People must have thought I was totally drunk or something. lol.

Anyway, try rest as much as you can, and if you still feel a bit wobbly try give it a bit more time. It will eventually go. I dont think Ive ever heard of a case that didnt eventually heal given VRT or even natural compensation.


Chris

 
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Old 08-21-2012, 02:17 PM   #3
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Re: Strange symptoms, waxing and waning...

For something that the doctors describe as fairly common and much like a virus, it seems to be quite a serious condition.

I find it very hard to believe that the immune system would take up to 6 weeks to combat the virus however? I had these feelings when I was on a boat for 24 hours and I was fine in a few days. Seems strange that it is taking so long to compensate.

 
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Old 08-27-2012, 08:28 AM   #4
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Re: Strange symptoms, waxing and waning...

Hi there
Well I'm now on week 6 and am exactly the same as you some days i feel a little better and for days on end I feel awful and can barely walk ! am glad to read this is quite normal as its soooo getting me down .
I have spoken to lots of friends of friends who's had this and they have had it for up to 4 months and are still stumbling around,it really is such an awful feeling and very debilitating,so hope it ends sooner than later for all of us.

 
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Old 08-27-2012, 10:00 AM   #5
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Re: Strange symptoms, waxing and waning...

I know how you feel. They took my inner ear since I was totally deaf. My brain isn't compensating for the loss of balance in my left ear. I have had my licence pulled since I'm a truck driver. I don't know what to do either. My dr. said it should be better but its not. I had surgery May 31, 2012. He told me wasn't 100% but this is ridiculous. Hope you get better.

 
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Old 08-27-2012, 10:04 AM   #6
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Re: Strange symptoms, waxing and waning...

Hi Florida,

It really isnt very nice, but the constant on and off of the symptoms is really the worst aspect, because the moment you feel better you are starting to plan all these great things to do, Then it hits you again. I still try to be optimistic everytime but I cannot seem to have more than one good day in a row?

I dont know if this is an inner ear problem or not. But it's really getting to me now, I am getting quite angry and frustrated.

Everywhere I read about this is just person after person saying they have lived with this for months and years with no improvement. Really brings you down because there is absolutley no people posting saying they were back to normal within the 3 week period!

Have your symptoms improved at all over the 6 weeks do you think? And have you had a referal mafde to a specialist?

I went back to the doctor and he is now sending me to a ENT specialist - but my appointment isnt until October. I just hope my symptoms can improve to the point I am able to atleast carry on with my life 70%.

 
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Old 08-27-2012, 10:16 AM   #7
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Re: Strange symptoms, waxing and waning...

Kipper that is awful, It is so sad to hear that something like this can affect your life so much. The worst part is I feel so alone with this, I have pretty much no friends, my life revolves around work. I have absolutley no money left at the moment and I am on the verge of having to use a credit card just to get by. How long have you being suffering with your symptoms? I do not present with any hearing loss, sounds like you have had a pretty serious case of this! I do hope you get better soon, I wouldnt wish this on my worst enemy - it is just torture.

 
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Old 08-27-2012, 11:12 AM   #8
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Re: Strange symptoms, waxing and waning...

Hi jimmy, I have pretty much had this since march 30 constantly. I have worked a few wks during this time but as you know I can't now. I have had vertigo over the years since I lost my hearing in left ear in 1999. It would only last hours or at most couple days. Now it is constant with headaches, loud tinnitus, and my head feeling very full. I also have memory and concentration problems. I'm where you are with money. I have short term disability but they are fighting me on this. I have friends I just don't even want to leave the house. My son comes and gets me when I want to get away. I wish the best for you. Just stay positive and I know that's hard.

 
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Old 08-27-2012, 02:45 PM   #9
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Re: Strange symptoms, waxing and waning...

Hi everyone,
I started having problems in March this year. I am feeling better but have problems in the stores, malls, and busy places. I get feeling disoriented. I do notice that some days are better than others and I am much better than I was in March-May. Even somewhat better than June. I was told it was a virus that affected my inner ear and now it triggered vestibular migraine. I have a constant pressure on the sides of my head. Like something is pushing inwards. I have talked to people who were able to over come this by medicine and another person who said she went through it with no meds and is fine now. But she endured through it for 4 years.
I can remember the horrible head rush feeling. I would feel an awkward sensation go through my head and my chest and feel like I could pass out too. That lasted most of March and ended early April. Now I have problems with driving, being in busy places like stores and around a lot of people. I have been told and heard that it is the visual stimuli overload and that the brain is trying to process everything. I get feeling so depressed that I won't be able to feel confident and good about getting into the car again. I'll keep all of you in my prayers.
Please let us know how all of you are too.
Take care,
Nicole

 
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Old 09-05-2012, 06:16 AM   #10
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Re: Strange symptoms, waxing and waning...

Hello All,

I started having the vestibular neuritis symptoms in June. The severe symptoms have past, but I'm left with on and off vestibular migraines - a out once a week right now, visual disturbances when looking down - the ground looks wavy at times and I get a headache when walking. I see a neurologist is 2 weeks for more tests as my balance tests were normal but my eyes are not tracking g properly. This stuff is really depressing...not driving and never knowing when it's going to come on again. Its being afraid to do things because I don't know if I'll have a sudden episode. I keep thinking its almost resolved and then I get another dizzy headache that lasts about 4 hours. Does anyone else experience the sporadic headache/dizzy issue and the problem with seei the ground as wavy? Starting to gt panicked that something else is wrong.

Hope everyone has a better day today than yesterday.

 
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Old 09-05-2012, 08:44 AM   #11
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Re: Strange symptoms, waxing and waning...

Hi everyone
Well I am now on week 7 off work ,I am somewhat better but am still not able to walk properly out doors and just don't feel right still and its very depressing as you all know.
I went back to the docs yesterday and he has given me some new meds to try as the previous did nothing ! (stemetil) and the new one is called Betahistine Dihydrochloride I think (lol) that's from memory as the prescription is at the pharmacy ! has anyone taken this ? or know anything about it ? as I'm a bit reluctant with meds !!!!.
I also have just got a call from the receptionists at the docs surgery to say he wants to see me re my MRI i had 3 weeks agoi so am now worried as was convinced it was all clear due to the length of time gone by .
Anyway I hope everyone is doing a little better and lets continue to support each other.

 
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Old 09-05-2012, 09:10 AM   #12
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Re: Strange symptoms, waxing and waning...

Hi Florida,

I'm right there with you...12 weeks off work and can't walk properly outside, although indoors seems fine. It feels like there is no end in sight. I've not been prescribed anything to date...neurologist appt on the 17th. Just using Advil when the headaches come...today is one of those days with ear pain and a dizzy headache. I'm very reluctant to take meds and hope to get through this as some others have without drugs. Some people say the drugs help, others say they slow progress.

Try not to worry about the MRI...call as soon as you can to get an answer, he may want to just tell you next steps. Keep us posted...we're here to support you.

 
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Old 09-06-2012, 12:26 AM   #13
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Re: Strange symptoms, waxing and waning...

Hi there teetime

yes I cannot believe were all going through this for sooooo long I find it unbelievable without answers and to be left worrying constantly about what is wrong .
I am really hoping my app with the doc to discuss the MRI is just routine ! and to tell me all is good lol.
I have always been a headache sufferer for many years but there doesn't seem to be any connection with the dizziness ! I only feel dizzy now when looking/putting head down or rolling on my right side in bed ! and as for the walking ! its the strangest thing not being able to walk properly and am wondering how much longer this is going to drag on for with life on hold and missing out on social events etc is so depressing.
Hopefully someone will post about the drugs I have asked about as really want to know more about them ! and if there worth taking.
Thanks again for the support .

 
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Old 09-06-2012, 03:07 AM   #14
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Re: Strange symptoms, waxing and waning...

Well I am now on week 5 of this horrible illness. The symptoms seem to be changing as and when they want to, it is very difficult to establish whether my brain is actually doing something constructive or just messing around - I had a few "good" days and forced myself outside the house - took a few long walks. I woke up yesterday with the intention that I would be somewhat the same, which I was for the majority of the day until 5-6pm when I started getting dizzy and soon followed anxiety.

I am finding it exceptionally difficult to be relaxed, I find myself always having to play around with something or move my legs about to keep my mind away from the annoying sensations of movement.

I understand how everyone feels about feeling unable to do day to day activity, I have been off work for 5 weeks now, and I would just like to get back to my normal life and not worry about paying bills.

The most annoying part of this - is sleeping! I have never experienced such long periods of restless sleep. I go to sleep and wake up feeling like I have slept for hours only to look at the clock to see I have only slept a few hours. Seems as though I drift in and out of conciousness throughout the night. When light or morning hits I just cannot get back to sleep and my mind is just thinking about all this. Really makes everything so much worse. Has anyone else experienced this?

I also wonder whether I am experiencing vestibular migranes now. I have been reading about MAV, I have read about diet triggers but I dont eat the majority of the bad foods to start with.

I have been eating as healthy as I can, and dont eat chocolate or sweet things, try and eat plenty of veg, fish and fruit in the hope this would improve everything, but this does not seem to make any difference.

florida31 - I think if they had found anything serious they would of contacted you much quicker than 3 weeks. I would be guessing it to be a follow up appointment to see what the next stage is. Keep us updated and I hope everyone a speedy recovery from this nightmare.

 
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Old 09-06-2012, 08:44 AM   #15
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Re: Strange symptoms, waxing and waning...

Hi Jimmy
Yes I know what you mean about the symptoms all over the place ! I to am the same,today has not been gr8,went to a friends for lunch as she had to nip to the supermarket so off we both go it wad awful and did not enjoy the experience at all ! I managed a few items and pushed the trolley which helped me but felt like everyone is looking at the strange walk I have at the moment !,so I then went and sat outside.
I also hate the days when I am low in mood today being one of them ,the loss of independence is awful and hate not being able to just jump in the car and go to to the shops .
Chin up everyone,its good we have each other for support and to share our experiences and emotions.x

 
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