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    Old 10-21-2007, 01:38 PM   #1
    neiluk
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    Labyrinthitis? Does anyone else have this?

    Hi,

    Just been diagnosed with something called viral Labyrithitis and dont mind admitting that I'm a little spooked my the symptoms I'm experiencing and initial research I've read on the Net.
    Up until one week ago, was a model of good healthy living, regular gym and runner. Suddenly started to get little dizzy spells standing, sitting, turning. Didnt think too much about it, but dropped in at the GP for a check. She's diagnosed something called Labyrinthitis. Well, what can I say. The dizziness has stayed with me all week and in fact developed into pretty much full time lack of balance, and sensation of being permanently drunk. It's worse with any head movement, but never really lifts.
    Never had anything like this in my life and dont mind admitting it's got me a little scared now as it doesnt seem to be improving. The GP suggested it was something that would probably disappear about 3-5 days. I cant go to work, cant drive my car, having problems walking steadily and can barely judge the simple act of crossing a road.
    Does anyone else have this? Are these weird symptoms normal? Is it going to go soon? cheers, Neil.

     
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    Old 10-21-2007, 02:27 PM   #2
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    Re: Labyrinthitis? Does anyone else have this?

    hey there....there are many people on this board that have initially been diagnosed with labrynthitis...or as you will see on here, referred to as "Labs". some people, it can go away in a few weeks...others, it's affects can linger for a while. do a search on the engine here for it, and it will bring up all the posts discussing this....also, very useful info in the "sticky" on here too...discusses all kinds of stuff. you aren't alone, that's for sure. i was initially diagnosed with labs in the ER, but my diagnosis has been changed a few times over the last 4 months...sorry. a lot of people with it, if it is actually labs, get over it fairly quickly...for the most part, most of us on here aren't a great time frame to judge by but everyone here is very helpful! good luck, and hope ya get over it quickly!

     
    Old 10-21-2007, 02:41 PM   #3
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    Re: Labyrinthitis? Does anyone else have this?

    Neil...most get over this 2-16, 20 weeks...some of us take a bit longer. That said, it is not atypical to get this virus that hits your ears.

    If it goes longer than 12 weeks, there are exercises that can help get you on the recovery track.

    Wishing you the best.

     
    Old 10-21-2007, 04:54 PM   #4
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    Re: Labyrinthitis? Does anyone else have this?

    Charlotte is right on- most people get over this quickly and may have some mild lingering effects that go away over the following months.

    Some recent research has shown that starting the rehab exercises right away can speed up recovery. If you go on the sticky there's info of vestibular neuritis/labyrinthitis and rehab exercises.

     
    Old 12-30-2007, 04:51 PM   #5
    neiluk
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    Vestibular Neuronitis

    Hi All,

    Thanks so much for your replies. Well, I'm 2.5 months down the track now and sorry to say I've still got this *&%$ thing...though diagnosis has now been changed to Vestibular Neuronitis. As time has passed the doctor's original confidence that all would be back to normal within a few weeks has dissipated. I've been through MRI, bloods and audios - all clear. First month was hell - balance was shot, could barely walk, permanent haze, slightest exertion caused fatigue, and had to lie down to avoid fainting in public on about 4 occasions. Second month - balance much improved, walking again and eventually made it back to gym for gentle workouts. Still suffering from some bizarre symptoms including all-day popping in both ears which is so annoying and ever-present head pain specifically on the left side which has been with me from the start. The ENT I have been seeing once a month remains confident of recovery, though cannot explain popping ears, says its not typical of VN. Also he's telling me that VN patients should be fully recovered by 3 months...I'm almost there and feeling far from 100%. When I asked, he dismissed VRT as a waste of time and money, says rest and time is the only treatment. Didnt seem to appreciate my questions about Balance Centres, therapy, or VN-specialist ENT's...his area of ENT speciality is Thyroid. Feeling pretty useless at the moment, sitting at home, twiddling thumbs and waiting for this nightmare to pass so I can get back to my old life. Would love to know if there is anything else I can do to help myself back there. My family in Australia recently sent me a news article about Alicia Molik (No 1 Australian female tennis player), who has recently come through a 2 year battle with this same VN virus. Would love to know more about her treatment, specialists and recipe for recovery. cheers, Neil

     
    Old 12-30-2007, 07:11 PM   #6
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    Re: Vestibular Neuronitis

    I have also been diagnosed with labs. I believe that labs and VN are the same except that with Labs you would have a hearing loss. I have a slight hearing loss in my right ear so that is why I got the labs diagnosis. I too had an ENT that said you will be better in 6 months. I am at 4 1/2 months now and am far from 100%. I can only work 5 hours a day and that is extremely difficult. I have to schedule my days, work during the week, food shopping, housework, etc on the weekend. If I need to do something even a doctors appt I have to take off that day because it will be too much for me. I was extremely active before this you couldn't keep me in one spot. LOL i have two boys and I was running all the time. This has completely changed my life so i know what you mean. I am going to make another appt with a specialist to see what they say because it has been too long. I would suggest that you get a second opinion if that will make you feel at ease. I am in the process of fighting with my insurance to get to a specialist for VRT (vestibular therapy). keep us posted. Hope this helped alittle.

     
    Old 12-30-2007, 09:27 PM   #7
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    Re: Vestibular Neuronitis

    You may want to see a neuro-otologist, a specialist in this area. There is definitely research on vestibular rehab. If you look on pubmed and search for vestibular rehabilitation you can find some articles. I don't think we're allowed to post links on here or I would give you one directly. You could print it out and give to your doctor. You can also start them on your own. In the sticky section, see Charlotte's VRTs. Just be sure to start with just a few exercises, the business card one as a top priority, and then build up. You don't want to overload your system by challenging your system too much too fast either. Good luck!

     
    Old 12-30-2007, 11:55 PM   #8
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    Re: Labyrinthitis? Does anyone else have this?

    Ughhh Sorry to hear, but 2.5 months is really not that long (I believe) to have this illness) I believe the majority of people may not get over it within a few weeks like they say. It does get better though and hopefully you will start seeing better days soon

     
    Old 12-31-2007, 10:42 AM   #9
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    Re: Labyrinthitis? Does anyone else have this?

    Hi Neil
    As you are in London get your GP to refer you to the neuro-otology department at the National Hospital for Neurology and Neurosurgery at Queen Square. I got an appointment in under 4 weeks from the time of asking and they were fantastic. After taking a very detailed case history they say they are as certain as they can be that I had left ear vestibular neuritis/neuronitis, probably from a virus. That was in January 2006 and the balance and dizzy issues I have had since are the result of the damage done then.

    Before that I had been given a diagnosis of labs by ENT in October 2006, although I had no hearing loss. That was 9 months after I had had 3 violent vertigo episodes and until then they were just treating me for sinustitis and giving me antibiotics and nose sprays. Nobody had even mentioned VRTs although if it is a vestibular injury then the earlier you start the better. Then after another vertigo episode, which I was told was decompensation, a different ENT guy started to talk about Menieres syndrome, although still no hearing loss/tinnitus etc., and then I got the feeling than nobody really knew what I had happened. He sent me for VRT and I did get immediate improvement in balance/dizziness. But there were still dizzy problems so in November I asked for this referral.

    They ran all the tests and they were not happy that no-one had run these tests on me in the previous 2 years. I was there for 3 hours and for the first time someone actually asked me questions about type of dizziness, when and how, and then listened to the answers. All they do all day long is see dizzy people so they really do get it. They are going to see me again in 5 months and in the meantime have referred me to their own vestibular therapists to make sure I am doing the exercises they prefer and correctly. I am still waiting for that appointment.

    Don't get depressed because you were told you would get over it in a certain number of weeks and you haven't. I don't think there is any 'average' with this stuff, every individual is different and gets better at a different rate. Maybe that's linked to severity of damage? But getting a good diagnosis is key, because if it is MAV or BPPV or something else, you need the appropriate treatment. But if it is labs or vn then being as active as possible, doing VRT, avoiding stimulants such as caffeine and alcohol, low salt are important. Also if you get dizzy in shops, noisy places etc., then try exposing yourself to those sorts of situations little by little, increasing exposure over time. I managed to get round the supermarket on the Saturday before Christmas when it was absolutely heaving and I wasn't dizzy at all. I couldn't have done that 6 months ago.
    happy new year!

     
    Old 01-01-2008, 03:39 PM   #10
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    Re: Vestibular Neuronitis

    dollydd - Thanks for your reply. Will def talk to my GP about a referral to this Hospital. My ENT is ok but seems limited on VN specifics, as his specialty is thyroid. He also brushed off my questions about VRT and ENG tests etc as a waste of time. You're right, he's also got me concerned with his comment that I "should be recovered by 3 months at the latest". From what I am seeing on these sites, I am certainly not the only VN sufferer with persistent symtpoms beyond this duration. Not to mention the case of Alicia Molik, elite tennis star, who took 18 months to recover, despite five-star medical support. Have already cut out caffeine and alcohol and pushing myself to keep up the gym despite all. Progress is slow. To be honest, it's all pretty scary, I've never been ill like this before.

    tummy2 - thanks, glad to hear that 2.5 months is not that long. Wish my ENT had told me that instead of frowning and telling me I should be much better by now.

    JoniMichelle - thank you, I will ask my GP about seeing a neuro-otoligist instead of just a general ENT. Like I said, my current ENT discarded my question on VRT as a waste of time and money.

    dizzysally - thanks for the reply, my GP also started with a Labs diagnosis, but they switched to VN when there was no hearing loss. Reassuring again to hear that I am not the world's only slow recovery case! Great that you're still able to work, I've been off since day one. Gym has been a lifeline for me, cant workout like before but makes me feel half-normal just getting in there and doing what I can.

    Does anyone else suffer from constantly popping ears? Started in about week6 of all this, and now they just pop and crackle all day long. Bizarre!!

    cheers, Neil

     
    Old 01-01-2008, 03:59 PM   #11
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    Re: Vestibular Neuronitis

    Quote:
    Originally Posted by neiluk View Post
    dollydd - Thanks for your reply. Will def talk to my GP about a referral to this Hospital. My ENT is ok but seems limited on VN specifics, as his specialty is thyroid. He also brushed off my questions about VRT and ENG tests etc as a waste of time. You're right, he's also got me concerned with his comment that I "should be recovered by 3 months at the latest". From what I am seeing on these sites, I am certainly not the only VN sufferer with persistent symtpoms beyond this duration. Not to mention the case of Alicia Molik, elite tennis star, who took 18 months to recover, despite five-star medical support. Have already cut out caffeine and alcohol and pushing myself to keep up the gym despite all. Progress is slow. To be honest, it's all pretty scary, I've never been ill like this before.

    tummy2 - thanks, glad to hear that 2.5 months is not that long. Wish my ENT had told me that instead of frowning and telling me I should be much better by now.

    JoniMichelle - thank you, I will ask my GP about seeing a neuro-otoligist instead of just a general ENT. Like I said, my current ENT discarded my question on VRT as a waste of time and money.

    dizzysally - thanks for the reply, my GP also started with a Labs diagnosis, but they switched to VN when there was no hearing loss. Reassuring again to hear that I am not the world's only slow recovery case! Great that you're still able to work, I've been off since day one. Gym has been a lifeline for me, cant workout like before but makes me feel half-normal just getting in there and doing what I can.

    Does anyone else suffer from constantly popping ears? Started in about week6 of all this, and now they just pop and crackle all day long. Bizarre!!

    cheers, Neil

     
    Old 01-01-2008, 04:03 PM   #12
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    Re: Labyrinthitis? Does anyone else have this?

    Yes Neil I feel as though I am on an airplane all day everyday. I constantly have to try to pop my ears or they just pop and crack as I chew or yawn, etc. it's so annoying!!! My head feels like it would if I was on an airplane as well just the full head, full ear feeling. It seems that while I am sleeping my ears fill up and the most and I feel awful all night long, barely sleep at all. Then in the morning the drain alittle and the fluid comes out and I feel alittle better for about 5 minutes and then they fill back up. This is a horrible, dreadful thing. I push myself to work because I have two boys to support but it's very difficult. I can't do anything else but work the five hours and then I am exhausted. I would love to go to the gym but after working 20 hours a week I just can't do anything else except of course food shopping, cleaning and taking care of the kids. LOL So I understand where you are coming from. But keep in mind I didn't work for the first 3 months!!!! I just returned 1 1/2 months ago and just 5 hours a day. You will get there it just takes time! Before this I worked 35 hours a day, took care of the kids, the house, worked out and was go go go. It puts the brakes on your life that is for sure!

     
    Old 01-03-2008, 10:02 AM   #13
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    Re: Labyrinthitis? Does anyone else have this?

    It all depends whether the virus caused significant damage to your inner ear. I was diagnosed with lab over 4 years ago and I'll never be the same. I'm not nearly as rotatationally dizzy, but I certainly feel off balance quite a bit. One doctor (the autoneurologist expert) told me I'd get better in a few weeks with exercises and another doctor (my regular NP) said once the inner ear is damaged, I will always have some minor problems. Unfortunately the NP was correct. I think she had more of a whole health approach then the autoneuro.

    I'm usuallly pretty good, but whenever I get a cold or virus of any nature, my inner ear gets attacked because it's already damaged. I had mono a year ago and that really messed me up. Right now I have a cold, and my ears are popping, cracking, and I can hear fluid galore.

    Not to scare you, because it's not nearly as bad as it was 4 years ago. I am probably a worst case scenario. These are some things that reactivate my symptoms.

    1. cold or any virus
    2. menstral cycle (me being a female, clearly)
    3. sitting in front of a computer every day
    4. neglecting to go to the gym or walk on a regular basis
    5. watching a lot of TV and staying inside the house
    6. alcohol
    7. excessive caffeine (although I'd rather be dizzy than quit)

     
    Old 01-12-2008, 01:19 PM   #14
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    Re: Labyrinthitis? Does anyone else have this?

    Well, with the ominous 3 month marker fast approaching, have been pushing myself to try more and more activity. Returned to daily gym, public transport, shopping, and finally drove a car again. Attempting a part time return to work next week. Know I'm far from 100% but got a feeling that I've reached a steady state where staying home any longer will do me more harm than good. Received a sizeable reality check today when I attended my first Premier League football match. Within minutes of arriving, found myself swamped by 40000 chanting Spurs/Chelsea fans - ears crackling and popping like cheap stereo speakers and return of the dizzies! Damn! I really thought I was on the way back...didnt realise I was still so fragile. Oh well,tomorrow's a new day... Cheers, Neil

     
    Old 01-12-2008, 02:07 PM   #15
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    Re: Labyrinthitis? Does anyone else have this?

    Don't get discouraged. That is what happens with Labs there are constant ups and downs. They say that you will get good days and then bad days and it will continue like that until the good outweigh the bad and then the good days just continue to get better. Hard for me to tell if that happens with me. It has been a very very slow recovery I am at 4 1/2 months. So keep pushing yourself! My motto is "I'm not dead so I better keep on living" That kinda gets me though each day!!!

     
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