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Old 04-05-2003, 08:24 AM   #1
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Talking Labyrinthitis - it does get better!

Hi everyone,

Just want to say I've been away from these boards for a few days, as I've been experiencing some improvements in the way I feel generally and have tried to make the most of it by doing more things - nothing outrageous, just getting out a bit more! Am still not dizzy-free, but apart from a really bad setback 2 weeks ago, have made a lot of improvements in general over the last month. Still wish I could be symptom free, still having trouble when shopping (looking at items on the shelf whilst walking at the same time is really hard!) and am a LONG way off being over labyrinthitis. Am also well-aware that there may be more 'bad' days to come - but feeling positive that it will resolve itself eventually. Believe me, I've not always felt this the last 5 months!!!
Going back to work is going to be really tough, and I think it will take me months to get back to working full-time, but I'm thankful that I'm being allowed to return gradually and do just a few hours to start with.

I really hope everyone is having a good weekend - am off to do my vestibular exercises now.....

Ruth
xxx

 
Old 04-05-2003, 11:00 AM   #2
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Hi everyone.

Just met someone yesterday that told me he had dizziness problems for ten years. He is not dizzy anymore. Like us he had seen many specialist and all of them gave hime different diagnosis. He is pretty sure he had a virus. He told me it started with vertigo for the first 3 days and then he was stuck with lightheadedness, pain behind the head and chest area, felt like he had a fever (lack of energy) and reduced vision. After many months he started feeling better and then it would come back. After 3-4 years it would go away for many months and then the same symptoms would come back again. This went on for about 10 years and now he has been symptom free for many years. He said that you need to push yourself as much as you can without overdoing it, and to stay positive, that it would eventually go away. All the treatments that he tried never worked except he thinks taking magnesium, primerose oil, vitamin E helped him a little.

By the way, I asked him if he had a clicking jaw and he said yes. It seems that most of us here have somekind of a problem with our jaw (painful or not). Mmmmm, something to think about.

 
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Old 04-05-2003, 01:10 PM   #3
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Thank you soooooo much you guys for sharing those hope messages! As it usually is the case with long illnesses, it`s easy to become depressed. It`s nice to read that some people do see improvement because personnally, after 3 and a half months, I was starting to wonder if there was any hope! I also tend to forget (on my really low days) that I have had days that were better. Enjoy every minute of it Ruth http://www.healthboards.com/ubb/dance.gif
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Old 04-05-2003, 08:33 PM   #4
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Ruth,

How long have you been feeling good? Whatever this is that I have (since I STILL haven't been to the ENT) is confusing me. I have been feeling fairly good (not "normal" though) for a couple of weeks now. Like you said, shopping is still challenging and once in awhile I have the sensation in my head that you get while in an elevator, you know the dropping sensation. But as far as really bad dizzy spells, I haven't experienced those in awhile. Sometimes I still feel foggy. I just started therapy and all of the exercises she gave me to do don't make me feel dizzy. I feel like just giving up but I'm afraid if I do, eventually I will have another set back and I'll be back were I started from. Also, it is hard for me to push my doc for a referral when I'm not even feeling that bad. So anyway, I guess I'm a little confused as to how I should be dealing with my condition. Is it typical to go for weeks feeling good?
Noey

 
Old 04-06-2003, 04:28 AM   #5
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Hey Yahoo, I'm just into my six month now and am still a long way off feeling 'normal', so hang in there, you will see improvements - it just takes so long, that you have to force yourself to look back to the first 3 months to realise that there are more better spells.

Noey... I have just been getting more days where I feel able to cope with the dizziness - but it is unfortunately still there! As long as it is more 'stable' I feel I can handle it better. I would say the big difference for me is that I feel less ill in myself - throughout this ordeal I've felt unwell with the actual virus as well as the vertigo (feverish, etc...) - and am getting more days with dizziness/imbalance as my only symptom. I think the fact that you are feeling much less dizzy is a good sign and I think the foggy feeling will eventually go too. I don't know what to say about the exercises as the ones I was given definitely make me more dizzy. Just because you are not feeling terrible doesn't mean you can't ask for a referral - I think you should if your symptoms are concerning you.
By the way, it is very typical to go for weeks of feeling good and then have setbacks - this happened to me 2 years ago, when I got labyrinthitis - I'd be fine for a couple of weeks and then have a few really bad days again. This time I have been much more ill and for a lot longer, so I don't know if my recovery will follow the same pattern.

Ruth

 
Old 04-06-2003, 12:47 PM   #6
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Hey Ruth,

Good to hear this horrible illness is finally giving you a break - sounds like the start of the more good days than bad trajectory which ultimately leads to recovery - there's a lovely thought.

Yes, MPaiment, the rash of people with clicking jaws etc who also get dizzy symptoms is interesting. It makes you wonder how many people mught be misdiagnosed with an ear problem who may have a jaw problem, who knows.

I am going through a rather wearing anxious about it all phase at the moment, worrying a lot. It seems strange as I am definitely better than I was. Guess it's just the length of time I've been ill, the struggle to find a proper diagnosis. Although I have done my own research and made headway, there would be a great deal of comfort in knowing someone with some medical authority had told me what it is for sure. Without that the door is always open for those 'what the hell is this, have they missed something sinister' moments. Sorry for the negative slant of this post, but I know others out there must have these moments too. I hope it will pass as despite keeping myself busy etc... when alone the worry seems to kick in again. I will push on with seeing my own dentist - then probably making an appt with a tmjd dentist- have more ear pressure tests on Wednesday at ENt, if they are clear it will point more heavily towards tmjd. Ah well, the search continues.
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Old 04-07-2003, 02:37 AM   #7
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Hi Ruth
Glad to hear you're having a good spell. You were due one!!
Jen

 
Old 04-07-2003, 06:47 AM   #8
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Cheers hbep and Jen!

Have just got back from work - am starting by doing just a couple of hours a day and will see how that goes - don't want to push it too much. It was o.k. Everybody was really nice and told me how much they've missed me and how well I looked!?! Told them I had a lot of makeup on!!! Seriously though, I do look a lot better than I have done in a while - that was the virus rather than the dizziness I think that made me look pale and tired. As you all know, often with these inner ear things you can look o.k. but actually be feeling pretty horrible. Had to explain that I'm still not right, but much better than I was. Am pretty pleased with myself - this last five months have been a really rocky ride - I am so thankful for finding this message board - it has kept me going and stopped me from completely sinking under. No matter how sweet other people have been I really don't think they realise how awful inner ear stuff can be. People here REALLY understand.


Hbep, I just want to say that you have been very helpful and supportive to me and to many other people on these boards - like you have said before, we don't want to be a bit better, we want to be well - it has been a long time for you to deal with this, and like you when I've been on my own, I've got down and worried that I will never get my old life back. I feel sure you will get to the root of it - hopefully soon. You can feel so alone with this - but I hope like I've found, the people on this board can help you cope with it. When I was feeling low a couple of weeks ago, a friend said to me that as long as I could keep my eyebrows above water, then I would get through it. I keep thinking that and it is strangely comforting. (She doesn't know I can't swim!!!Lol!)

Hope things are improving for you too Jen.

Ruth
xxx

 
Old 04-07-2003, 09:23 AM   #9
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Hey Ruth,

Thanks for your post, really cheered me up. I especially liked the bit about keeping your 'eyebrows about water,' you're right, there is something strangely comforting about that, seems an easier propsition, metaphorically speaking, than having to keep your whole head above water. I always feel so ridiculous when I find myself having yet another moan about finding this hard - but I guess that's just the way it goes.

Very glad that you're managing a bit of time at work and it seems to be ok. Funnily enough I am sure mine is not viral but when I stopped being horribly dizzy people who I've seen a lot of all the way through this started saying I looked much better. I'm sure the virus subsiding has something to do with it in your case, but on a cheery note it may also be an indicator of the dizzies slowly subisiding. Let's face it, being dizzy is so wearing it's enough to make anyone look ill and weary.

How's it going, Jen? You mentioned an appt with the neuro oto? When is it? Anyway, hope you're doing ok, and obviously let us know what they say.

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Old 04-07-2003, 12:38 PM   #10
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Ruth: Glad to hear you are feeling somewhat better and are back to work...I know what you mean when you had to explain to everyone that you were better, but still not 100%...I went through the same when I went back to work....And I also know what you mean when you said, that although you look fine on the outside, people tend to forget that you still suffer from that darn dizziness and unbalanceness...I always have to remind my family from time to time that although it looks like I've gotten my life back, nothing could be farther from the truth...Saturday night, we went out to dinner and I had such a hard time sitting at the table and trying to eat, as sitting still makes me so much dizzier...I longed for my rocking chair! Hope you have many more days of good spells, Ruth...Hopefully you are on the road to recovery! http://www.healthboards.com/ubb/t_up.gif

[This message has been edited by NoodyPooh (edited 04-07-2003).]

 
Old 04-07-2003, 01:50 PM   #11
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It is now month 11 of this and the improvement over the months has been slow and gradaul. I am now at the stage where i am not dizzy all the time. It now seems to occur for only a few seconds with certain head movements, also walking around the office and supermarket i still feel a bit strange (not really dizzy). Can any one tell me from expirence if these remaining symptons will clear? You just seem to get better so slowly, you think you may be stuck like it for ever. With regards to people, some seem to understand whilst others just can't seem to beleive that you can still be affected by this thing. You take your balance completely for granted until the have a problem with it.

 
Old 04-07-2003, 02:16 PM   #12
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Hi there all,

Crazy legs - yes it does get better. I don't have lab but was very dizzy - because my inner ear probs were almost certainly not caused by a virus I think my dizzines got better quicker than some other people - I still have problems with an out of it light headed feeling, weird vision etc... BUT the whole out and about - supermarkets being hell thing is vastly improved. It will improve for you too. A friend of mine with lab is in to month 14 - he feels 'normal' nearly all the time with the odd wobble if he over does it.

By the way - the dizzy on head movements thing - sometimes with lab you can develop BPPV - tends to occur on head movements - check it out just in case. it can be easily cleared up with an Epley Manouver (sp?)
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Old 04-09-2003, 04:02 AM   #13
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Hi Hbep and others
I am here - just lurking! Haven't had much to add lately, but am always interested in how everyone is doing. I have booked my neuro-oto appointment on the 30th april. I'm not quite sure what I'm expecting to hear. More information cannot be a waste, is what I'm thinking. I too am convinced that I am on the road to recovery. My positive thoughts lately are testimony of that fact! I found it impossible to stay positive when I felt really bad so this must be a sign that I'm better. Do you all battle to determine whether you have improved or not? I find I really have to imagine specific events from 2 months ago and try and remember how I felt at the time. It is then that I realise I am getting better. This is also evidence to me that recovery is painfully slow!!

 
Old 04-09-2003, 04:19 AM   #14
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Hi Jen

Yep, for me, feeling much better mentally is a definite reflection of feeling better physically! There is nothing like 5 months of feeling cr*p to make you appreciate the better times when they start to get more frequent. Feeling 80% normal will certainly do for me right now!

Ruth

 
Old 04-10-2003, 03:58 AM   #15
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Totally know what you all mean about hardly noticing the improvements! Sounds weird, but I also think we prob all have different expectations. I have had mildly in comparision to you Ruth so I am constantly wanting to feel like I used to, whereas for you, because getting on a bus was a nightmare a few weeks ago, being able to walk around the shops now must be amazing. What I dont like, is the lack of consistency, I have great days and then crap ones!

Think am going to cancel Dentist as positive it isnt TMJD. If I developed jaw symptoms then I'd go but I am determined and certain its L'itis.

xxx

 
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