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Old 05-10-2012, 04:36 AM   #1
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Labyrinthitis is ruining my life!

Hi everyone(sorry this is going to be a rant, very sad that the only thing I have to chat to is a computer!!)
I have had what the doctors to believe to be labyrinthitis for 2 months now, but I find the doctor I see just thinks I'm a hypochondriac doesnt listen to my symptoms and just keeps signing me off work but I want something to make me better!
Firstly I'm 22
What make this worse is I am a DANCE teacher so it's not like I get to sit around all day and my other job is I work in delivery for a shop so both jobs are very physical , and even though I can get signed off working in the shop I still have to teach otherwise I lose my job and I'm really struggling

For the past year I've had little symptoms which should of been warning signs, tinnitus started up and sometimes when I've been in training for my teaching exams I started to feel a bit light headed , then one day (2 months ago) I was just about to teach a workshop in a school and I started feeling extremely light headed and like I was going to pass out and very very sick, I somehow managed to get through with the help of other teachers and then after a couple of hours I felt ok again. The next day I went to the shop job, and was uncontrollably gagging feeling very sick then kept feeling like i was going to pass out (I have never felt dizzy only felt like when the blood rushes to your head and you feel like your going to faint!) and got sent home and felt rubbish for the rest of the day then for the next 24 hours after that I couldn't even lift my head I felt like my neck had weights in it couldn't stop gagging even though I wasn't actually throwing anything up and I just spent the weekend in bed, I was lucky this was at the end of term so I got to have a month in bed over the Easter holidays doing nothing (which was so frustrating for me because I hate doing nothing)
The docs said they couldn't actually see any damage in my ear but gave me some tablets to help with dizziness and nausea, but when I was on them I was having panic attacks practically every night thinking I was going to die, i was having chest pains, my left arm was shaking or going numb and every night I felt like I was dying of a heart attack or a stroke for about 3 weeks and in the end I just took myself off of them and I haven't had those sorts of panic attacks
I still have a tight chest sometimes and like I've got something stuck in it so don't know what that's about?And also sometimes I get blurred vision where my eyes can't properly focus on things even when I'm wearing my glasses(which are just meant for long distance) or they get really achey for no reason and I struggle to keep them open and the doctor was just like well go and see your optician then! And I was like thanks thats helpful!
Something else I've only just noticed is when I am jumping sometimes (eg doing starjumps or something) theres a clicking in my ear almost like something is moving up and down with me=weird?

I still have mini panic attacks when I go to teach a class and there's no other adults that could possibly take over from me if I need to go pass out or something around because I worry what would happen if I did , what would the kids do etc and my heart just starts to race and makes me worse!
I'm so depressed I've had to cancel all my teacher training all my teaching exams and I've been considering giving up teching and giving up dance because I don't think it's fair onthe kids when I'm feeling rubbish so I'm considering giving up my life really! My boyfriend tries to understand but I think he thinks I'm faking it half the time and doesn't take it seriously , because a lot of his family has died of cancer when I need an hour to lie down because I feel awful he's just like 'well you haven't got cancer' and it stresses me out more and makes my symptoms worse because I feel like I'm on my own here!And he just doesn't get what I'm going through because the symptoms aren't physical. And when I was feeling like I was dying he was just like oh don't be so stupid and get all angry at me and then it makes it even worse! lol
Last week I was having quite a good week, I only had about 2 bad days but this week it's got really bad again and even the parents of the kids I teach are questioning am I ok to be teaching because they can see how white I go and I get on with them really well but I dont want people to think I'm not capable of taking care of/teaching their children
I dont know if I'm asking a question here for people to respond to it's nice just to get off my chest how I'm feeling!! But I was just wondering what medications have helped other people

 
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Old 05-10-2012, 07:00 AM   #2
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Re: Labyrinthitis is ruining my life!

Years ago I had something very similar and it is maddening! But it will eventually go away almost entirely. Do your ear canals/ canal feel like they are "itchy" ? Make sure you dont have inner or middle ear fluid (which can cause a fungal infection that is so hard to clear up). Mine went undiagnosed even after seeing an ENT. So i want to encourage you to go to another ENT. Jumping causing that clicking sound you described makes it sound like you have fluid somewhere behind the eardrums--one or both ears. You do have something ear-related. Also it will make you feel so DIZZY, panicky and crazy AND depressed. Usually a cortisone type drop is prescribed. I finally just woke up one day and realized it was gone after suffering with it for a year or so. However-the tinnitus is always with me now. Some days are better than others and you really do "just get used to it."

Hope this helps. If one has never experienced that vertigo (aka your BF), one doesnt realize it controls everything, makes your entire world spin. And as a dancer, I cant image anything more miserable. For me, there was no way I could even drive, hardly could walk or turn my head because of the dizziness. It is frustrating since you other wise "feel fine". Yet you have to be still. I so empathize with you. Bless you.

 
Old 05-10-2012, 07:16 AM   #3
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kirstycooper01 HB User
Re: Labyrinthitis is ruining my life!

Thankyou for your reply!don't get any itching in my ear :-/
I just feel like I'm going mad and I'm not sure if il ever be able to train properly as a dancer again :-(
Had this crazy thing just come up on the right underside of my jaw/top of my neck where it's really sore to touch doesn't feel swollen or anything just painful and a rash has come up all on my cheek/ my neck and now I've got it in my head that my throats going to close up where it's probably just nothing argh!
Dont know whether this is linked to the labyrinthitus or whether this is something new to contend with!

 
Old 05-15-2012, 08:10 PM   #4
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Wobbles08 HB User
Re: Labyrinthitis is ruining my life!

I would suggest getting your anxiety treated. I am a long time sufferer of generalised anxiety disorder and am now recovering from a bout of viral labyrinthitis. Something that I noticed this morning is that I had an anxiety attack and the symptoms were almost identical to labyrinthitis (visual spinning, sick to the stomach, feeling off balance). It is well documented that anxiety can be triggered by labyrinthitis even if you have never had an episode before. It is only because I am so aware of the symptoms of my anxiety that I am able to tell the difference. I would suggest seeing your doctor for an antidepressant to relieve the anxiety symptoms. Anxiety can lengthen the amount of time it takes to recover from labyrinthitis. Please do not go onto any benzodiazepines (eg. Xanax) as they are highly addictive and only a short term solution. Please do not give up your dreams. Alot of the current symptoms you are describing are textbook anxiety symptoms so I urge you to seek help.

 
Old 05-18-2012, 11:54 AM   #5
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Re: Labyrinthitis is ruining my life!

Thanks for the advice I really appreciate it
I've tried taking kalms from the supermarket for anxiety that's what the doctor said to try but what bothers me with my doc is she said she can't see any damage whatsoever in my ear so how can it be labyrinthitis?I'm going back on Tuesday and going to demand to see an ear specialist
I'm just really depressed now I was getting ready to start my own business up but I've just had to put my whole life on hold my dizziness has got a lot worse this week and I just feel like I'm letting down all the kids that i teach coz I'm not up to scratch and I hate not feeling 100% professional sometimes I just feel like crawling up in a ball and dying and I'm just not myself I used to be really bubbly and ambitious and I'm just not the same person anymore :-( Respect to my boyfriend for putting up with me lol
The other day I accidentally cut myself shaving my legs (lol) and I've got an itchy rash appear around the cut so now I think I'm dying of blood poisoning lol coz my tetanus shots aren't up to date
Does anyone have it where sometimes you find it really hard to focus on something(with eyesight) and your sight goes blurry a lot?and also when you go to places where there's a lot going on in the background or it's quite warm you start to feel seriously unwell because they were my starting symptoms what I've had for about a year now

 
Old 05-19-2012, 04:38 PM   #6
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Wobbles08 HB User
Re: Labyrinthitis is ruining my life!

Hi Kristycooper01, anxiety can come in many forms, your leg shaving episode sounds just like anxiety as we always fear the worst is happening (in your case, blood poisoning). Also, crowded areas can pose a serious problem for us anxious people. It sounds like it may be worthwile seeking a second opinion regarding your health. May I suggest seeing a different doctor for a second opinion, making sure that you let them know about your anxiety symptoms. If they have a different opinion to your current doctor it may be that they have some relief for you. Don't be surprised if they want to fix your anxiety symptoms before your labyrinthitis symptoms because it may be that you need to get rid of the anxiety before you can get rid of the labyrinthitis. When looking for a good doctor, make sure they are a good listener and want to work with you to find an answer, not just throw high doses of medication at you. What they should do is offer a low dose of medication and then work with you depending on how you are feeling on the medication to either adjust it or change it until they find the right dose of the right medication for you. I would also suggest seeing a psychologist to get some tools to help you through anxious episodes. Some of us get our anxiety from one occurrance in our lives, with me it was a car accident, with you it seems to be from your labyrinthitis. Find a good doctor and a good psychologist and once your anxiety is under control, you will be able to see which symptoms are the labyrinthitis. I would still get your ears checked but if they cannot find anything wrong after all the tests, focus your energy on fixing the anxiety portion and the labyrinthitis may just disappear.

 
Old 06-02-2012, 12:59 PM   #7
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Re: Labyrinthitis is ruining my life!

Hi
I know exactly how you feel and i now feel like im going mad because of the anxiety it has caused.
I was diagnosed with labrynthititis 6 months ago and it has got lots better from when i originally had it but i just cant seem to shake the dizzyness and uneasy feeling!
I think that my anxiety issues are making the dizzyness worse but its so hard to forget about it.
I have issues with going in public places such as shops since being diagnosed and i just want things to go back to normal.
Just wanted to let you know that your not on your own and i know exactly how you feel.
Im back at the doctors again soon just for some reassurance that iv not got anything serious wrong with me-which is what my head keeps telling me!
I also have trouble concentrating and everyday things such as a stomach/headache seem so dramatic and my head tells me its cancer etc. i know thats its all in my head but so hard to stop!
I have trouble sleeping too :-(
Xx

Last edited by Sunfloweruk; 06-02-2012 at 01:03 PM.

 
Old 06-02-2012, 02:11 PM   #8
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Re: Labyrinthitis is ruining my life!

Trust me....it is all the anxiety ! Dizziness...tight neck....tmj, all of it.
I've suffered for years. The key is learning relaxation techniques and trying not to panic when you're dizzy and tense.
Good luck...your not alone.

 
Old 06-02-2012, 05:20 PM   #9
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VNHOOP HB User
Smile Re: Labyrinthitis is ruining my life!

In Oct. of 2011, a few weeks after I had a parathyroidectamy, I woke up light headed, dizzy, nautious, etc..... I never had the classic spinning so it took a while before I was diagnosed with labyrinthitis. In fact I suffered for many months, seeing doctor after doctor, with no diagnosis. Finally I was referred to another ENT who saw nothing wrong but fortunately ordered an ENG test. The Caloric testing portion of the evauluation confirmed I only had 45% function in my left ear. Finally! A diagnosis. I am still lightheaded 8 months later, but am dealing with it much better than I was before knowing what was wrong. I was depressed and anxious. I have read many stories where it's taken months to years to recover, so I'm in for the long haul but am prepared. Hang in there and know that all days are not bad and you will see improvement. I'd recommend the ENG test and if you can find a balance disorder center near you, that would be perfect. I drove over an hour away, and am glad I did. Keep posting your progress or just for therapy reasons.

 
Old 06-04-2012, 04:32 PM   #10
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Re: Labyrinthitis is ruining my life!

My story begins six years ago when out of the blue I started to feel light headed and off balance. Im also a dancer and so these feelings were very foreign to me. I felt heavy headed, tired with a sort of brain fog, sore ears and jaw pain. I wet to every speciallist had MRI's done, even paid 2500 dollars for a splint for my jaw thinking tmj was the cause.
I urge you to research verticle heterophoria. I recently reieved glasses with prism lenses and I am 10% normal again

 
Old 06-04-2012, 04:33 PM   #11
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Re: Labyrinthitis is ruining my life!

Sorry that was supposed to be 100%

 
Old 10-08-2012, 05:11 PM   #12
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Re: Labyrinthitis is ruining my life!

Hi I'm not sure if this page is still active or if you are still having this problems but I am experiencing this right now. Two months ago I was at dinner and just stopped speaking and had a full fledged panic attack. Since then I've had labyrinthitis and constant symptoms. I have gone through everything, thinkin I have had a stroke to ms to something else. I have facial tightness sore eyes. Feel like I'm going to pass out. Body numbness constant adrenaline headaches ringing. Every symptom you can think of I am having right now which has triggered anxiety and depression. It sucks. I can't help you but I can say that I feel your pain exactly and that if anything happens positively I will tell you. I hope you eventually get through this. It's just a waiting game. Episodes of it come and go. There's night where I think I'm goin insane and that I might aswell just die because ill never have my old life back but somedayd I feel a bit better and realize I can eventually beat this thing.

 
Old 11-08-2012, 10:21 AM   #13
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Re: Labyrinthitis is ruining my life!

Hi, shortly after waking up about 4 weeks ago (15th of October 2012), I was overcome by extreme dizziness and nausea. I couldn't move my head or breath without having to vomit.
I spent the first week in bed because of extreme dizzyness. The second week I could stand up, but i had trouble walking. Now in week 4, the symptoms have improved, but i still experience balance problems. I still have difficulties to stay standing upright with eyes closed and mild difficulties to walk, dizzyness when i have to move my head. I never had hearing loss nor tinnitus.

I went to see an ENG which confirmed that the problem was caused by vestibular neuritis, which seems to be another term for labyrinthis. It is a viral infection of the equilibrium nerve.

I am also a dancer (dancing is my passion). I fear that i might have to give this up ...
Does anyone have experiences about how this evolves in the future ?

@kirstycooper01, I wonder if you are recovered in the mean time and how you are doing right now ?

Thx for your replies.

Marc

 
Old 11-13-2012, 04:41 AM   #14
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Re: Labyrinthitis is ruining my life!

Hi Kirsty,

Ive been going through very similar symptoms. A lot of the time I get a real vacant feeling about myself. My body is there but feels like nobody is home. I struggle to take in my surroundings and conversations with people and its got to the point where I feel like iv'e had enough. I work in retail and constantly feel like I have to leave because every day is such a struggle.

This has been going on for around 6 months now, and I have moments where i'm constantly death in my right ear. My eye sight seems to be blurry a lot of the time and have trouble focusing on things. I'm normally such a bubbly, happy person but this has made me so quite and closed off, I hate it! I have an appointment with a specialist next month and worried they will just pawn it off as something minor.

Have your symptoms got better Kirsty?

 
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