Labyrinthitis: An Inner Ear Condition

I feel like I am seasick, but I am landlocked!
I feel like I am seasick, but I am landlocked!

Reminds me of the Labryinth

My Experience with Labryinthitis: A Personal Look at the Condition

A few months ago I had these dizzy spells that came and went. They lasted for a long time when I had them, but came and went. One day, it was so bad I went to the ER, which I blogged about. The ER doctor told me it was vertigo and prescribed me an antihistamine, meclizine.

I followed up with my Dr. the next day and he said I had acute labrynthitis. To the layman, this is from a virus in my inner ear. Basically, since that is where balance is controlled my brain is confused. It doesn't know where I am or what I am doing, which makes me dizzy all the time. He said the ER doctor gave me the right medication. I took if for about a week and it went away.

The bad part about this is that this condition can last for years- there is no cure. I can only mask the symptoms. So, yesterday it came back. However, I shrugged the dizziness off as not eating. When I got home, it became worse and today, even worse. I had some comp time from work I was using this morning, but asked if I could take the afternoon off. I also realized that we have training on Weds., snd told my boss I would still come on for that. However, I just got out of the shower from a scary experience.

While I was showering-and no I was not singing-I lost my balance and almost fell. I caught myself, but my heart was racing and I was petrified at the thought of me getting knocked out and laying in the shower, naked with water failing on me and no one around to help since I am home alone. It was a scary thought.

I usually shrug things off, but I need to start taking care of myself. I called the Dr. and the earliest they can see me is at 1:00 tomorrow. I called my boss to let her know. She advised that I stay home-even if I did go to the Dr. driving this dizzy is not a very smart idea.

The medicine does not seem to be working this time, although maybe I do need to take a few doses before it kicks in. When I took it last night, about a half hour later, around 8:00, my eyes were so heavy and I was slurring my speech. The next thing I knew, I woke up this morning on the loveseat, half sitting up. It conked me right out. I remembered that my doc said to take just half if that happens.

It upsets me feeling this groggy from a medication-first of all, I have more energy than ever since I became a vegetarian and it is also a lovely day. It's terrible I feel that way. Second, from a general standpoint, it's terrible that all a lot of medications do is make you sicker or have bad side effects. Sure, I can't feel that I am dizzy-BECAUSE I AM ASLEEP.

I am not sure what more the doc can do for me. Maybe there is a different medication, or maybe there is something else they can think of that I may have. In a strange sort of way, I like the name of my illness- acute labrynthitis because the Labyrinth was always one of my favorite movies.

Labryinthitis: A Medical Look at this Ear Condition

According to e-medicine.com, Labryinthitis is somewhat of not so much a rare condition, but one the medical community does not fully understand.

Labryinthitis is defined like this:

Labyrinthitis is an inflammation or dysfunction of the vestibular labyrinth (a system of intercommunicating cavities and canals in the inner ear). The syndrome is defined by the acute onset of vertigo, commonly associated with head or body movement. Vertigo is often accompanied by nausea, vomiting, or malaise.

What causes Labryinthitis?

According to e-medicine, physiologically, a mismatch of vestibular, visual, and somatosensory systems is present. This mismatch is triggered by an external stimulus, such as a stop after turning, a change in altitude, or motion/height sickness. A lesion within vestibular pathways (ie, inner ear to cerebral cortex) causes this imbalance.

Who Gets Labryinthitis?

More women than men contract labryinthitis, and most people are in their 40s.

What happens when someone gets Labryinthitis?

Although the vast majority of cases of labyrinthitis are self-limited, a minority of patients can have a more chronic and prolonged course. Patients express difficulties involving vertigo and hearing.

--Vertigo from movements, not limited to turning over in bed, reaching above the head, turning the head and more.

--Nausea and vomitting

--Temporary loss or change in hearing

How long does Labryinthitis last?

--Doctors say that this condition is self-limiting and usually goes away in a few weeks, however reoccurances are very common.

--Reoccuring episodes can last up to five years after the first case hits.

How is Labryinthitis treated?

Usually, medication is given to help treat the symptoms of the ear condition. Most commonly, antihistamines are given. Several medications have antivertiginous properties (eg, meclizine, scopolamine, ephedrine, dimenhydrinate, diazepam) and others are useful as antiemetics (eg, promethazine, prochlorperazine).

Comments 135 comments

david 7 years ago

yes, it describe exacly what I suffered. in addition to hypertension, and gout medicine, I take 1 buffered aspirin 500mg in the morning, (to be dropped), 25mg of antihistamine (sigle ingrdient bendaryl) at noon, and 10pm before going to bed (avoid drowsiness induced acidents). I have bendaryl (actually generic diphenhyrazine HCL, walmart) for 1 week. will continue for another 2 weeks and try to reduce it if feel better.

I am 60 male, non drinking, non smoking, have hypertension and about completing gout tretment.


Silvia 7 years ago

I just started having dizzy spells starting last Wednesday. It's something that lasts about 1 split second, it's more annoying than scary. I tried figuring out what it could be but on Friday I decided to go to the hospital and was told I had Labyrinthitis and was prescribed SERC, chemical name: betahistine. I've been taking since then but I guess it will take a couple of more dosage for it to go away. Anyway I hope it goes away, I know mine is mild vertigo, can't imagine what it must be like for people who actually see the room spinning all the time.


sarah 7 years ago

Ive just been diagnosed with the condition, im feeling very unwell the dizzyness is constant, i have been takin prochlorazine for 2 days now and hoping it will make me feel better soon as i really donot want to be off work for much longer, does anyone have any tips of how to cope with this condition.


Rob  7 years ago

Hi, too weeks ago i went to a christening, just as it began i started to go all dizzy and had to run out. The feeling was intense for about half an hour then wore off as the day went on. I went to the doctors and he said it could be a bit of Labyrinthitis but he couldn't rule out stress. He gave me some tablets (propranalol) which he said would clam me down. He said if they work then its stress. Anyway a few days later i was on the motorway and an attack come on, it felt like i was going to pass out, it was horrible, i went all tingly and my arms ached. I had to ring an ambulance to get me of the motorway. They took me to hospital and they ruled out any heart problems, the doctor refered me to the ear nose and throat specialist for tests. He suspected it to be Labyrinthitis.

My ears are constantly ringing and my head feels under pressure. I went up to the library as i felt ok, the minute i began to talk to someone i had another attack of extreme dizzyness and had to come home.

Does anyone know how i can gain some relief from this while i wait for the appointment at the clinic to come round. Its horrible.


Melissa 7 years ago

I was diagnosed with labyrinthitis in late June 2009. It is an extremely difficult virus to have. It is now mid September and I have had many bouts of dizziness over the past 4 months. Things like the weather i.e., if it rains or is humid affect me. If I get a cold or get run down I get all the same symptoms again. I have had some great weeks with no signs of it at all. Then the ugly beast rears it's ugly head again. Sometimes for no reason except maybe I am stuffed up. I have found that I had major anxiety with this. I ended up having to take Zoloft and Xanex just to get thru the day. I have found that eliminating caffeine, eating healthy, drink tons of water and exercise everyday has helped a bit. Is there no end to this? I was told by my ENT that I would have "moments" for up to a year. GREAT! I hope that your experience with this is better than mine has been. Good luck and take care of yourself.


Tammy 7 years ago

Its been three weeks since I've been dealing with diagnose of labyrinthitis. Went to ER b/c thought I had the flu. Told inner ear disturbance. Severe vertigo for 2 days only and dizziness since then. Prescribed meclezine took for 1 1/2 wkn then stopped b/c was making in me soooooooo tired - would knock me out. Does anyone know of any other meds tro take that can help with the dizziness? I feel like I am barely able to function normally. Always feel like I am walking on a see-saw.

Thnx :-)


Josie 6 years ago

My "episode" began while I was driving my girls to camp. Right smack dab in the middle of a major city roadway, it hit me. It felt like when you go over a steep hill or are on a roller coaster, kinda hard to explain, very surreal. I pulled over to the side of the road and opened the windows, drank a big bottle of water and did some "yoga" breathing. I ended up having to call my husband to come pick me up from dropping them off at their camp. When I went to minor emerg. they told me it was probably just a case of a sudden drop in my blood pressure and sent me on my way. Well since the beginning of August, I have a had bouts of dizziness, very sore/tired eyes, sometimes my head feels like it's "bobbling". I found a site on the internet from two UK women sharing their experiences with Labyrinthitis and BANG.. that's when it hit me. I'm NOT having a stroke! Their symptoms were identical to mine! They say misery loves company, well it's so reassuring to know that other people out there are going through the same thing, albeit VERY VERY frustrating!


jackie 6 years ago

I have been told by my GP that i have Labyrinthitis. I have felt unwell for a while with stress symptons like anxiety, irritability,and not sleeping etc. But three weeks ago I went to work and felt very tired and tearful. I teach fitness and i was with clients and suddenly had this horrible dizzy spell and the morning got worse with more turns to follow. I went home to bed but had a scary turn where the room was spinning and my vision went. I called the doctor who said it may be a combination of stress with Labyrinthitis, he prescribed Prochlorperazine to help with the dizziness. I have been again to the doctors who gave me Diazapan to relax me. I feel so under the weather and am still not sure 3 weeks later if I have both Labyrinthitis and stress combined! Anyone any suggetions for self help exercises?


Raine McCormack 6 years ago

I have suffered from labs and to some point 19 months on still do. This condition is not documented much and doctors often appear to not understand the enormous issues it can cause. Anxiety goes hand in hand with labs because its a natural reaction of the brain to panic with this condition.

The best form of attack is to use VRT. Rehabilitation exercises help your brain re learn to cope with the inner ear damage that has occurred. Please google VRT to start immediately to speed up the recovery process. Remember the inner ear cannot I repeat cannot repair!! So you have to help your body along to re train and eventually you will not notice the condition any more.

Stugeron the travel sickness meds will help also but only use them when you really need it, as they can delay compensation.

Having a set back is very common and can last a couple of weeks, stress, tiredness and extreme weather changes can bring it on so VRT helps again.

Remember to be patient and practice, practice, practice. The more drugs you take for this condition will guarantee its return as your brain cannot compensate whilst it has nothing to work with.

Be strong people and if you have any more questions please e mail me at soliddecorating@btinternet.com

Thanks.


wanda Smith 6 years ago

I hsve been to the doctor several times for this condition in the past thirty years. This is the first time I've heard a name for it. Msybe the medical profession are finally being aware tha it is a disease. The horror passes after a few days. The worst problem is I am now suffering hearing loss.

With some treatment this mih\ghy have been avoided. I wonder if sinus infection snd allergies are involved?


Matt 6 years ago

I'm 26 male, with this disease, I want to try to understand it more. I'm always feeling like I'm falling and cant sleep and to afraid to eat because i don't want to vomit. I do have one question I know im a TMJ sufferer to, maybe the inflammation in my jaw joint is making this worse?. Doc gave me some antihistamine meds hope this subsides.


Kristina 6 years ago

Does anyone have any blurry vision with this? I have had a ringing in my ears, blurry vision, and nausea for 4 days now. The doctor thinks it is labyrinthitis.


laura 6 years ago

I started with dizzy spells 6 days ago. I thought it was because I hadn't eaten very much the day before, and maybe my blood sugar levels were low. But the dizziness persisted, to the point were my eyes feel tired and heavy and I just want to sleep. When I walk I feel like the floor is curved, and my eyes don't always focus properly or seem to lag behind when I look around. I visited the doctor yesterday after 5 days, and he said he thinks I have Labyrinthitis. I was prescribed Stemzine which is for nausea and dizziness, although I can't really say it's working. I have a feeling it may not be the case for me. and it's a different problem. I have been told in the past I have issues with my inner ear tube not functioning properly, but I am rarely getting pain with it these days, so I feel like this condition has been wrongly diagnosed to me.. I don't know.. My BP is normal, and previous blood tests for anaemia and diabetes have always been negative. Does anyone know anything about ear crystals? My mum's friend told her she suffered from this.


James 6 years ago

Hi guys, well after reading these posts I think I can safely say I am in the same boat although mine has been around for around 8 years now. It is always there, this dizzy feeling but some days are worse than others, due to diet, amount of sleep, drinking alcohol, weather, stress.

I am positive that the stress has just got worse and worse and worse over the years and it is feeling like the condition is getting worse because the stress manifests itself on it.

My symptoms are all of sudden i get this overwhelming drowsy feeling, my eyes droop, my head feels full and my eyes get very very sensitive to light. I have a spaced out feeling and sometimes people talk and it kind of echoes im so not with it. I get floaty feet and my eyes go all out of focus and stiff, the worst part is when i am in busy situations with lots going on, like shopping centres, outside on roads or citys. What you have to understand is that the balance is like the 6th sense it controls your hearing, your sight and touch and everything else like that. I constantly get it when out and about, or in dark places or if im staring at the same thing for a while, or typing like this, watching tv, writing etc. The thing that hurts me the most is that no one can see this, it is an invisible condition, you look normal on the outside therefore no one can see your suffering. What may be a simple task for some becomes a mountain for me, when i have been drinking the next day i feel like im going to die, i mean we have all had a hangover but when you have this condition it is just uncontrolable, you may say why do it to yourself, well i say I hate this and wont let it beat me, i want to live my life as normal because if i stop doing everything i want to do it will win. I guess you build up tolerance and just deal with it but i hate having to, i get depressed not being able to do things like i used to, and what everyone else does. If i spin round once i will fall over, i cant go on fairground rides or anything.

Caffeine, nicotine etc all make it 10 times worse and I often get pains in my ear and wake up every morning like iv been in a boxing ring with mike tyson!! I have been for mri, blood tests, balance tests, everything, but they never find anything yet i am certain it has to be to do with my dizziness as it is always worsens when i do something that i need my balance for. following objects around the place with my eyes, playing football and cricket, looking up or down for extended periods!!

I could write for hours over the things i have experienced for the last 8 years and still no cure! I am literally dying to find one, it is literally ruining my life!!

I hope this helps anyone that feels alone as trust me I am with you!! As always if anyone can help or has similar problems please let me know at james.absalom@googlemail.com

Good Luck!


Bill 6 years ago

have you guys heard of Vestibular Rehabilitation Therapy ?


Amber Lacy 6 years ago

My husband has been experiencing labyrinthitis for over 4 months now. We have two children ages 3 & 4. This has completely turned our lives upside down. We can no longer do anything and I mean anything. The kids have to constantly be quiet...meaning no loud play because that seems to enhance the symptoms. Anything the doctor has prescribed has enhanced the symptoms. We have had every test done under the sun to rule out anything serious but how could you not call this serious. This has been such a horrible "disease" to cope with and no end in sight. We have added more protien to his diet as well as eliminateing caffiene, alchohol, fun activities with family members....We can't even go bowling with the kids because my husband can't handle it. I wish I could trade places with him. He is so miserable....


Bill 6 years ago

Tell your husband to see an Neurotologist Balance specialist and get him on a Vestibular Rehabilitation Therapy program right away. The longer he waits, the longer it will take for the therapy to work. It does work it just takes a long time and it to can be frustrating. Just keep with it and in about 4 weeks he should start to see some improvement. After that keep doing the Therapy, it gets better slowly. Medication just masks the symptoms


Jen 6 years ago

I've been dealing with Labs for almost a year now. It comes & goes, so I just take Serc and/or Gravol when necessary. I haven't had severe vertigo, since my first attack, so I feel like I shouldn't complain too much.

I also had blurry eyes at one point, but I wasn't sure if it was the labs, or a side affect of the anti-motion patch.


Melissa 6 years ago

Hi,

I posted on here back in September. I have to say that the labs symptoms are almost gone. It has been a long, frustrating 7 months. Most of the day I feel completely normal. By the evening I start to feel a bit off. Sort of swirly headed. Hard to describe. The rocking, falling and walking on a funhouse floor feelings are all gone now. I start VRT in October. Wonderful! I also exercise daily and don't drink caffeine, drink alcohol or smoke. Pretty boring, but I don't mind. I hope that the next 7 months leave me completely symptom free.


May 6 years ago

Hi, Was diagnosed with labyrinthitis in June last year after collapsing in my home and was really sick and could not move for 5 hrs until Doctor arrived, he said it was the worse case he had seen, I was taken to hospital and had CT scan, this is the worse illness I have had, have been subscribed Cinnarizine.


Bill 6 years ago

Listen up everyone on this site. The only thing that will clear this up is VRT. Do not look up VRT exercices on the internet. Go see a Nuerotologist and get to a balance specialist and get on a personalized Vestibular Rehabilitation Therapy program. The longer you wait. The longer it takes to work.


Amber Lacy 6 years ago

Thanks Bill! We have seen a VRT specialist and she has thought that my husband was on his way to recovery she showed him the exercises to continue at home and wants to see him again in a couple of weeks. The unfortunate thing about all of this is we have done all of our research about labyrinthitis on our own. The doctors have not done one bit of good...Just cost us money through premiums and deductibles! I had to fight for the referral to see the therapist for VRT. But with our strength, hope, and exercise I certianly hope he will me on the mend very soon!


Bill 6 years ago

Tell him to keep doing the excerises no matter how long it takes. Never skip a day.


Merci 6 years ago

Just over 3 weeks ago I woke up with the spins. Everything would spin when I would move my head to the right and left. I panicked and called my boyfriend and told him I would need to see a doc if it didn't go away. I laid back down carefully and was able to get fall asleep and woke up fine. Went to work that evening and came home with a pounding headache, which may have been due to the fact we were very busy. ( I work in a restaurant/lounge) The next morning I woke up again with the spins and went to the hospital. The spins lasted all day and got worse by night. The doc said it was vertigo and to take Gravol and to go back to the hospital if things got worse. A couple days later I still had the vertigo and went to a hospital but had waited for 4 hours and did not know when I was going to get in to see a doctor. I left and was happy that the next day the vertigo had subsided. I still had a feeling of unbalance and saw my doc finally and he prescribed Apo-Prochlorazine and ordered blood tests, and ECG and urine test. When I went to get my prescription the pharmacist said it was a psychotic disorder medication and it would make me drowzie and give me mood swings. I decided this would not help me at work at all since i work in a fast paced environment and manage a restaurant. I did not take it and after a few days the dizziness went away. It's been a couple weeks and the vertigo came back this morning. When I am laying down I cannot move my head or I will get the spins. I might try the meds for dizziness to see if it helps, but not sure if it will help me get back on my feet for work. Hopefully getting in to see the doc tomorrow. Does anyone find they are able to work normal jobs with this vertigo? Or what can you do to help get back in the swing of things.


DJ 6 years ago

On Christmas day, I was hit with a bad case of labyrinthitis that got worse on boxing day. I was bed-ridden for 4 days solid as I was in a constant state of vertigo. The worst day was December 27th. The room was spinning in both directions. On the 28th the vertigo subsided to the room spinning in one direction. Serc didn't do anything for me. Gravol seemed to help keep the nausea at bay. I was off work for 2 weeks. Even when I went back to work, I was still unsteady and nauseated until the beginning of February. On February 4th, I did a blood pressure check (I have a monitor at home as I have hypertension) and I was reading a bit high (142/90). On second reading I was 139/89, which is still high for me. I haven't been higher than 120/80 for all my life until I developed hypertension. Well, the strange thing is, my medication was increased 20 mg twice daily and my vertigo and nausea almost immediately subsided (as soon as the meds were in my system). So, for those of you out there suffering with labyrinthitis (who also have high blood pressure) you may want to check your numbers. I am now fully recovered: no dizziness or nausea.


Jackie 6 years ago

My labyrinthitis started 2 months ago. I felt like I had the flu for about 4-5 days then I started getting this weird brain fog feeling. When I walked it seemed like everything around me was blurry. I then developed a dizzy feeling but I have never had full blown vertigo where the room is spinning (knock on wood).

I also have ringing in both ears and a feeling of fullness in one of them that comes and goes. I also have headaches now.

Anybody else experience these symptoms??

Please email me at Lwohitz@hotmail.com with your experiences. I need people to talk to about this!!

Jackie


Huskerpower 6 years ago

Well I guess compared to others here, I have a mild case of labyrinthitis... No vertigo, just a slightly dizzy fuzzy feeling at times. To make a long story short, I got the H1N1 flu virus vaccine and about 3 days later I came down with what felt like a "normal" miserable throat/chest cold. Well my right ear felt stuffy and my hearing was not right so I found myself in the family doc office and he eventually referred me to the ENT doctor. They tested my hearing and described it as "sudden hearing loss" (in my right ear). I could hear but lost a lot of low decibal hearing, which makes it hard to understand people when they talk in a low voice and are not a few feet away. Anyway the ENT doc referred me to what she called an "Ear Specialist" from a place called the House Institute in Los Angeles. Apparently this is a place with a very good reputation for helping the hearing impaired. Anyway the doctor that is seeing me (Dr Fayad) diagnosed me with Labyrinthitis and prescribed an oral steroid for two weeks along with an antibiotic. While it didn't get worse, it didn't get much better. Although some of my dizziness seemed to go away, my hearing was still not 100%. Last week he injected more steroids into my ear. I'm guessing it's meant to somehow "kickstart" the ear, although I'll leave the actual analysis to the experts. Anyway, not much difference in a week. I go back tomorrow to get my third hearing test in 6 weeks... Again, it seems mild compared to some cases I've been reading about, but even the mild case I have can be frustrating on my "bad" days. I can see why people have anxiety attacks. I'm trying to learn a new job at work, and my concentration just hasn't been there and I find myself not even wanting to concentrate too hard at times.... I sympathize with everyone! Anyone that has had steroid treatment can write me at jcortes@portla.org


Gemma Smith 6 years ago

I have been diagnosed with labyrinthitis.By your stories i realise that it is def that. I have been stuck on what i describe as a merry go round for 2 weeks now and just want the dizziness to go away so i can get back to work!!! Its making me very irritable and now i have lost my taste buds and cant taste or feel food in my mouth and don't know if this is a side effect of my medication or not???!!! im starving hungry all the time as it has not registered in my brain that i have eaten and then im getting tummy ache cos ive obviously eaten too much!!!!


gemma smith 6 years ago

i also started with a pulsating ringing in my ears and a fullness in my left ear! my vision began to blur and then the dizziness started!!!im suffering headaches too


Bill 6 years ago

Vestibular Rehabilitation, I 've been doing it for 4 months and have seen big improvements. Start this right away. meds only mask the symptoms.


Bex 6 years ago

Hi I've been suffering on and off since last July , I am again suffering the feeling of looking into a fishtank an head pains, an now with anxiety . My legs an hands feel sponge like and weak too. Just want to feel normal again :(


claire 6 years ago

I have had what i think is Labrynthitis since beginning of Feb started off with vertigo in bed then full on flu like symptoms & constant dizziness/fuzziness/blurred vision. Also think i am suffering anxiety after 9 weeks finally got referred to ent specialist (went private) having MRI scan on Thursday. When i asked one doctor (1 of 5 visits) if it was Labrynthitis he told me to stop looking on the internet, but if i hadn't then i think i may have cracked up by now. A really horrible illness that no one can understand unless they have been through it!!!


Tracy 6 years ago

I have been suffering since new year - feeling fuzzy headed and like I am constantly on a boat...I also have really bad tinnitus. I wish it would just go away as it makes me miserable.


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Diane Inside 6 years ago

Nice hub. I have suffered from labyrinthitis off and on my whole life. I rememeber being dizzy at different stages of my life the latest was about a year ago, which the doctor gave me meclizine also. It can be very frustrating and confusing. I always attributed it to the fact that I was born deaf in my right ear. Since I have dealt with this my whole life at one time or another I have learned to cope with it, it usually goes away after a few weeks. But good luck I hope you get the relief you need.


Melanie 6 years ago

My husband came down with sudden anxiety/panic attacks when he came down with a cold in February. About a week later the light headedness/dizziness/fog followed. It's been frustrating that neither the GP nor the ENT (we just saw yesterday) can confirm that psychological symptoms are part of Labyrinthitis (evidenced by testimonials of those who have suffered from this terrible condition). We walked out of the ENT appointment thinking...whoa! we know way more about this condition and its symptoms than you! Luckily hubby has been improving slowly over the past 2 months...


amber 6 years ago

After posting to this website a few months ago....We have seen improvement. Although with the damage done to the labyrinth I don't know if my husband will ever be "cured" But he has learned to cope through VRT. I really hope that many of you will find relief. After seeing my husband go through this and the time it took to diagnose labrynthitis makes me wonder about our health care system. Again, goodluck to all of you!


Zoezing 6 years ago

Glad I found this. It helps to know that others are going thru the same (some better - some worse) experience.


Lisa 6 years ago

I have been suffering with Dizzyness ,surreal feelings. lack of concentration,foggy eyes,heavy arms for about a year now ans have had long periods off work, i have had a ct scan and now waiting for a mri but my doctor does think it Labyrinthitis.People do not and cannot under stand what and how you feel so i wrote a long list of symptoms out for my work so they could understand.I can go a few day or week and not feel too bad and then WHAM it hits me for six.


Peter 6 years ago

The Dr told me not to long ago that I had Labryinthitis and gave me some antibiotics. I took them and seemed ok. Thinking back, I have had these feelings for a while but put it down to my other medication, or lack of - I seemed to feel dizzy if I forgot to take them.

Right now I have blurred vision in me left eye, ringing in both ears, feel dizzy and when I look from left to right (or even dart from one point in space to another) I get a louder ringing in my ears. Just clench your jaw shut really hard for a second... hear that noise ? That's the noise that comes and goes as I look around the room. Its more pronounced when its quiet, laid in bed etc, but I can hear it over most everyday sounds.

Does this sound like Labryinthitis or could this just be tiredness, being stressed out and needing glasses?

The other day as I was driving to work I realised that I couldn't even read the word airbag on the steering wheel. I got an opticians appointment the next day but by that time my sight was almost normal. Turns out I do need a stronger prescription (very very mild anyway) for my glasses but it was nowhere near as bad as it was the day before.

Right now im struggling to read this text with me left eye so it seems like it happens randomly.

Any ideas or suggestions? I do have another Doctors appointment on the 7th....


mandy 6 years ago

i have had this dizzyness now for 6 weeks i have been in hospital twice, the second time being for 5 days, docs have said labrynthitis, i am constantly dizzy no matter what i do, i am sick anything upto 3-4 times a day, i am just waiting to see the ENT specialist, as sometimes i feel i just cant go on much longer like this i have lost over a stone in weight in 6 weeks because of the vomiting, i feel i just cant eat or drink in fear of being sick , there must be a cure for this surely ?????


Erin 6 years ago

I get this often. The meclizine just makes it last longer. Don't take past day one. I take a very very strong antibiotic the minute it begins as it is almost always due to an inner ear infection. Two days after I start the medicine, it gets better. SOOO tired of the reoccurance though.


Jan  6 years ago

This condition really is horrible. I am 32 and after a trip to LA-the next day I attempted to go to work-I took a lunch break and after eating i fell asleep in my car. I woke up to this piercing ringing in my left ear. Fast forward ENT put me on prednisone didn't work. Trip to ER becuz of extreme dizziness..he puts me on anxiety pills.(helps me sleep at night)

I am going back to primary care phys to get a referal for a nuerologist and try the VRT. In my research it seems that time frames seem to vary for recovery. I do hope and pray that the symtoms improve as it has been very debilitating; keeping me from driving, cant function at work; loss of apetite and thoughts that I may be dying soon. This has been going on for 3 weeks.

Could the change in climate i.e, it was very dry in LA when I got back to Florida the humidity was almost at 100%? would that alone possibly cause tinnitus for this long of time??


Ang 6 years ago

Hi All,

Just a couple of questions. Has anyone recovered fully from this? I'm on my 3rd week now and the doc said it usually clears after 3-6 weeks but so far it sounds like most people have it for longer.

I didn't have any symptoms previous to this such as a cold or sore throat but my doctor says that with some viruses you don't?

The same week as the dizziness and the fatigue started I had high blood pressure, has anyone of you had high blood pressure with this?

My dizziness usually gets worse after I've had something to eat or if I'm stressed, does this sound like something which anyone of you have experienced as well?


claire 6 years ago

Hi everyone, I have had this now since January. Had ENT referral MRI scan Caloric/ENG testing this showed 18% damage in my left ear (balance system) Now having VRT so hoping it all goes very soon. Some days/weeks better than others have had the noise going on in my Ear dizziness is worse especially round my monthly cycle (sorry guys). If you can get a referral & VRT then push as hard a syou can as the Docs are not very helpful on this one I live in the UK & ended up going privately as the NHS is such a long wait for appointments. Just keep as active as you can walk a lot you need to retrain the brain to compensate for the dizziness as simple as that really just really crappy along the way.


cahterine 6 years ago

my symptoms started in february of this year with a brief feeling of being on a boat. two days later i had awful visual disturbances very surreal, it was like i could not focus on one thing it felt like my eyes were going left to right very quickly- everything seemed to have a vibration to it. i went to the dr. he said i had water on my ear. 10 days later went to an ENT he diagnosed me with acute labyrinthitis and vestibular neuritis. my vibrating vision and subtle dizziness would last weeks at a time with a day or 2 of feeling 100% normal.it was like i was looking through somebody else eyes i was scared to open my eyes each morning. my ENT explained to me this would come in episodes and the episodes would start to get shorter and shorter with more and more normal days in between. it slowly got to where i would have a week or so of feeling normal. after a period of 3 normal weeks it hit again, it did not seem a bad as it had been in feb. but i was more devastated by it because i thought it was gone. back for more tests..i saw a neurologist i had an audiology, VNG, and a MRI with and without contrast. all were normal. heading into the end of may i was doing great. i had an episode that lasted one day in mid june(very mild). through the rest of june and all of july were perfect . july 30 it hit again a little vibrating/surreal vision and subtle dizziness. i am going in my 10th day in this episode. went to my dr. b/c my ear felt like it had water in it which it never had this sensation before. she said my ear canal was narrowed-and gave me drops. i am now waiting an appt. with an otoligist (ear specialist) they are scheduling 6 weeks out.


Nina 6 years ago

Im so glad i found this! I had this when I was in grade 6. I am now 20 yrs old. When I first found out I had it I had a bad fainting spell. I was then dizzy and out of it completely for about 5 months, I had it very bad, in and out of the hospital testing. It faded out but then a few months after I had it again for a few days. It slowly improved but I am now 20 and I still feel the symptoms, in my opinion I don't ever think it completely goes away. You learn to live with it though. I don't know why they never found a cure though..


Kalib 6 years ago

i have had this for 5 weeks its terrible!! im too freaked out to go anywhere incase i have one of the attacks in public.


kimberley moss 5 years ago

Hi Everyone, im petrified to go out now. My first experience was 3 weeks ago at work. For no reason at all i felt as though i was going to pass out. I crawled and then very sick. Ive seen my GP again!!! i was convinced that i have a brain tumour. Doctor has said that i have labythrinitis. I have never heard of this condition before. My heart goes out to all of you who suffer this. I pray that i will feel better soon. I cant work now, because im absolutely petrified of passing out and ambulance etc etc. xxxx


Izzy  5 years ago

Hi everyone i have now been dealing with this for 4 weeks now ive had to quit work and school and have been having to have my mother help me out with my 2 year old son, who is a hand full. the strange thing is that it started out of nowhere. Im 22 and was perfecly healthy until this happened. I haven't been able to get out of bed and finally had enough of the dizziness and the nausea that comes along with it, it is horrible!!! I lost weight in the past week and been to afraid to eat, not to mention the anxiety that comes along with it. Today i finally went to the ER and got admitted and had a CT scan everything was normal, my doctor said that he would refer me to a neurologist so i have to see one this week. At the hospital they gave me a Valium which did calm the symptoms for now. So for everyone going through this right now, your not alone. I know exactly how miserable this feels.


Carol 5 years ago

Hi all

I developed labythrinitis about three weeks ago, like many of you, it was out of the blue. I was out with my husband and I became dizzy and had to return to our car. On the journey home I felt nauseous but the next day I was fine. A day later, it was back and hasn't gone away. I drive a lot as part of my job and have been off work since as obviously I cannot drive. I'm taking the meds which are giving me awful headaches. I'm worried that it will not go away as I need my job. I live in a rural area do driving is necessary to go anywhere. Neighbours are helping but I am hoping it will go away and that I'll get back to normal. Feeling worried....I've had a lot of health problems and thought that after several surgeries to put things right, I should now deservedly be enjoying good health.


Karen 5 years ago

My Labyrinthitis started 4 weeks ago after a very mild sinus infection. I am a fairly healthy 37 year old with three children ages 4, 5 & 7. I'm finding it difficult to function normally. It's been hard to keep up with household chores, grocery shopping, taking care of my kids and driving them to all their activities (and they have a lot of them) and helping with homework.

My symptoms came on gradually and are now steady. I suffer from bouts of nausea and have to drive with a plastic bag in my car "just in case". I feel dizzy all the time, it's like looking at the world through very drunk eyes. Sureal, everything looks a bit "off". I have trouble concentrating and can't remember what word to use at times. Additionally, I have this squeezing sensation, which pops up occassionally, deep inside my head and behind my eyes. It feels like someones wringing a towel out in my head.

My GP sent me for an MRI (to rule out MS and blood clots)which revealed nothing of significance. The doctor suggested that I see a neurologist and an ENT. Is it worth it? I might just wait it out and hope it doesn't return.

Side Note: I suffer from seasonal allergies and use a Nettie Pot depending on the severity. My GP said the Nettie Pot may have pushed the infection deep into my sinuses which may have caused the labyrinthtis This is his opinion only but it sounds plausible.

Best wishes for a speedy recovery to all that are suffering from this.


Laura 5 years ago

Hi All, I developed labrynthitis July of this year. This has been 3 hard months. I suddenly lost all hearing in my right ear and became very dizzy. I ended up in the hospital with vertigo. They did multiple scans to make sure I didn't have a stroke or brain tumor. They were negative. I am very healthy otherwise. I was treated at Johns Hopkins within 8 days and was immediately given intra-tympanic steroids and was on IV steroids in the hospital and then high dose oral steroids for 3 weeks. I was followed and given 2 additional intra-tympanic steroid injections. A little hearing returned but it is almost worse than no hearing at all. I feel a reverberation in my ear when babies cry or someone screams. It is almost painful. I have no true hearing. I remain dizzy and foggy despite vestibular rehab. The vestibular rehab just didn't work for me at all. My big question to others is "Are you having a feeling in your head, that is heavy and uncomfortable?" It makes it impossible for me to focus and live my life in any way. I also hear terrible sounds in my bad ear like a squeaky wheel and water running. At times it is so loud I can hear nothing else. I'd love to hear if anyone else has had that experience. Good luck to all of you.


sean sullivan 5 years ago

Hey i have the same problem.it all started a couple weeks ago when i was getting stoned with my frinds lol don't judge. as all of you i had a quick case of virtigo along with side affects of dizziness that last a while. it was all gone until i woke up one morning not feeling well with dizziness.

i have learnd that sleep or laying dowm seems to help A lot. the doc perscribed me Meclizine it seems to help with a really drowsy side affect. best thing if you smoke Marijuana to not smoke. also if you think positive it can help since Labrynthitis is viral, bacterial, and somewhat mental lol. Labrynthitis can trigger panick attack along with heavy breathing. so don't worry if you freak out it will subside. also do not stare at things that move in unison, or look at patterns because it can trigger the dizziness, virtigo, and panick attacks. i smoked a little marijuana to see if it would help and it triggerd the affects so avoid the herb. i hope this has helped i know its scary but it will pass with proper treatment and positive thinking. my email is SeanE.Sullivan@yahoo.com if you feel like talking about Labrynthitis it helps to share our owen stories. we are all troopers of our owen fears. so stick in their :)


sean 5 years ago

also i'm 18 years old


dermot 5 years ago

three months ago after i night of booze i was havin trouble with balance,which i put down to a hangover.after four days i went to the doc and was told i had a sinus infection. after two months of meds that didn't work another doc said it was labrynthitis. same sensations as above:feeling drunk all the time,lack of co-ordination and preception,difficulty with speech,vivd dreams and problems sleeping. for a while i thought i was loosing it and my mind started racing.going for an mri scan shortly and hope this all comes to an end soon. it's though to deal with your whole world not making scence anymore and people tell you it's all in your head!!! ironic or what!


Randall 5 years ago

Hi ,

I have been feeling the effects of what a GP very casually diagnosed as Labyrinitis for 4 weeks now.My main symptoms are lightheadedness, dizziness, out of focus eyes and ringing in the ears ( ive had that for years anyway ) , and im also sensitive to noisy crowded places also.

My symptoms with my vision and diziness get get worse with activity such as, walking , typing , watching tv, and focusing on people or objects. It improves with sitting down and more so with lying down.

It just hit me all of a sudden one day , and i thought i just had a virus and took anti-biotics, but after a week nothing.

This is very frustrating as you all know , i am just grateful that i don't experience the wild spinning vertigo that some had like my father who had Meniares for 2 years. The GP said that it will probably just disapear within a couple of months which im pinning my hopes on. Does anyone know if in most cases its does just clear up on its own?

Anyway i have an appointment in 5 weeks with an ENT , but im really hoping it has gone by then.

wishing you all good heatlh

Randall.


claire 5 years ago

Hi I have posted on here before I had all the same symptoms & following tests as everyone seems to mention on here. i was diagnosed with Labrynthitis as MRI etc ruled out any nasties. Mine all started in January and is finally starting to subside I have good weeks and bad weeks and have noticed the good is now lasting longer than before. It has been a long hard haul I celebrated (??) my 40th Bday in July & have 2 daughters aged 12 & 11 my whole life has been affected by this horrible condition but I am trying to stay positive & hope that 2011 will be dizzy free!!


Lisa 5 years ago

I have been suffering vertigo, brain fog, headaches, ringing in ears, it came on all of a sudden back in June after I had been lifting some materials. I began doing stretches for my sternacloidmastoid neck muscles ans scalene and it did dissapear, however returns if I do lifting type work, raking or digging, which i think causes the muscles to tighten on my right side neck as I am right handed and then pulls on the tiny middle ear muscles. Trigger point therapy. massage and stretching of the neck muscles mentioned has helped me.


Deb 5 years ago

Several months ago I woke up one day and found myself so ill, I couldn't even stand. The nausea was unbelievable. I never go to the doctor but I was so ill my husband forced me to go to the emergency room. I was diagnosed with Labrynthitis and given medication. After a few days, I seemed to go back to normal. Recently I have been having some mild dizziness and extreme hearing loss in my left ear. All I hear is a ringing and muffled sounds. I hope the hearing loss isn't permanent.


Wood 5 years ago

It's like I'm reading the story of my life with dizziness on this blog. I have been dizzy on and off since Thanksgiving. Somehow, I think my brain has learned to cope with being dizzy. I too, had to take a trip to the ER when the first onset came on, due to motion sickness...I have always been motion sick when it comes to spinning or backseats of cars etc. I was prescribed, phenigren, meclizine, steroids, and an anti-anxiety medication. It all seemed to help the motion sickness, but not the dizziness. Now my ears constantly ring, and any vibration of my head, like sudden turns, laughing, sudden head movement of any kind will trigger a slow motion reaction in my mind. It drives you nuts! E.N.T. Doctor said viral labrynthitis......i hate those two words!


donna 5 years ago

Hi

Ive had this since sept 09 woke up spinning one morning and then I got stuck dizzy! Ive seen three ENTS and am on a neuro-tologist now. Ive had a MRI scan and just had an inner ear scan. I tend to be ok for a few weeks with only mild symptoms and then BAM Im in another episode . Got vertigo again on Xmas day which I haven't had in seven months . I spent most of the day crying . Im only 24 and feel my life is over I don't get why it wont go away and am due to start VRT therapy in January which I have been waiting for for well over a year! GPs are a joke they make out this disorder is nothing when it compleltely ruins life as you know it.

Im also now getting panic attacks which I cant get under control ! Im sick of having this disorder its ruined my life


heather  5 years ago

i am 32 years old and have suffered from this condition since i was 19 years old!! sorry folks but there is no guarantee that this will go away,i tend 2 find the winter months are the worst due tho the wind blowing in my ears so if you go out wear a hat!! it is a horrible condition which used to get me down as i suffer from it about 5 times a year, all i can say is try as often as you can to protect your ears( wear a hat when swimming) it wont cure you but i have found it less frequent when protecting my ears, hope this helps.


mrd 5 years ago

Same I agree heather had it since 1994 best u can do is get used to it sometimes the brain adapts,since stopped coca cola,eat healthy i walk everywhere ,even when it happens and most of the time it goes away,if I walk,maybe u trick the brain or something ,maybe I just know it seems to work for me ,If u give up this thing ruins ur life ,u got adapt and conquer it


Kat 5 years ago

Hi

I had influenza in Jan 2011 which knocked me out for a couple of weeks but was back at work soon after. A week later I woke up and the room was spinning, I tried several times to sit up but just kept falling back into bed. I tel. the dr who said I had Labyrinthitis. I managed to get up but had to hold onto the walls to walk. it is nearly a week later and my head is still fuzzy, wake up every morning with the room spinning although that subsides after a few minutes and cannot do much as I keep losing my balance. Has anyone gone back to work with this condition, I am frightened to drive. If so how long did you leave it before you went back? Thanks for your help.


Margo 5 years ago

I have been experiencing similar conditions as you mentioned: in my left ear has been ringing, roaring along with dizzyness. It all started the day before Thanksgiving last year and saw an ENT in the Urgent Care and he said I have excess fluid that's causing the roaring in my ear. I told him that I have had hearing loss since I was five-could that be the problem? He said no and that I should take sudafed for a month and it should go away. For the month of December the loud noise went up and down like a stock market grid. I thought I was doing okay. Then when I flew back from vacation, I started to experience the loud noises again and saw my audiologist for a hearing test. The week after I experienced ringing in my ears and dizzyness. I saw another ENT in the UR that same week and she said I had an ear infection because she saw redness in my ear. So I was on an antibiotic for 10 days. Something about this condition with slight bouts of vertigo scares me too. So I went to see a ENT specialist and was very distrubed to hear the experience I have been going through. He had some blood work done and am having an MRI this week. I am not on any medication for this yet. Will keep you posted.


Aicha 5 years ago

This all started since my last operation.O have had many opeeations over the years and hve always recovered extremly quickly. I had an operation last May to remove a kidney stone from my utheter. Eveyting was fine and i was bckat work a few weeks later. Thw last op i had was the end of september last year. This was to remove 2 stones from my left kidney. Since then i have been very ill and after the op i couldn't even lift my head from the pillow. This went on fo a long time and i missed so much time from work. One nurse who examined me told me i had Post operarive virus, which, if i mention this to any doctor they deny there is any such thing. Anyway i was back at work for short time and then 4 weeks ago i was due to work but hd to go home as i felt very ill. The doctor told me i had labyrinthitis. I collapsed 3 times obe of which was outside. I ws staggering like i was drunk (i don't drink) and thenfell to the ground. There was noone about to help me. Finally after a time with enormous difficulty i was able to get up. 4 weeks on i am not gtting any better. My ears feel worse than ever ad i feel very weak and dizzy. Nothing is improving. Also over the last couple of years my ears have never felt "right". I had a few visits to ENT who told me there was nothing wrong with ny ears. I knew there was as we all know our own bodies. After my op my ears got worse. I told the doctors over a hundred times my ears didn't feel right but they did nothing. This is a very scary feeling and seems to be gtting worse. I have felt at times that i am absolutely steaming drunk. I also told the doctors on numerous accassions that the weather seemed to affect my ears eg i know hen its going to rain before it does as my ears ill get worse. so the weather also affects my ears. As mentioned i have not felt right since my last op and have been back in hospital 6 times since then, No doctor can tell me why i feel so weak and so ill other than my gp to say i have labyrinthitis. Its ahorriblr way to have to live and at this moment in time there seems to be no end to it..I am never a person to feel sorry for myself as therer are always people worse off than me but is bad enough i have other conditions like M E, Barratts esophegus nd much more without this not to mention iv had so many monts off work bcoz of it. I just want to go back toleading a normal life.


Aicha 5 years ago

Had cancellation app at ENT a few days ago..I had a feeling before i went it would be a waste of time and i was right..After my GP diagnosing me with Labyrinthitis, I saw a doctor at ENT who described himself as a scientist..He said i may also be suffering from a stroke which i know im not as have previously suffered a mini stroke a few years ago, he got me to do a few very silly exercises and then said he couldn't hep me and that i would just have to live with this condition!.. Great!!Been very ill since my last op at the end of september and only been back to work for a short while since then..Off again for 8 weeks after being diagnosed with this. Have been taking Stemitl which doesn't seem to do much. The dizziness is there all the time. Cant even have a break from it..Feeling stressed out with all this at the moment although trying not to feel stressed as im sure this makes it worse..


Kat 5 years ago

Went back to work last week after suffering nearly 3 weeks. Managed a few hours Monday and Thursday, didn't feel great Friday but went in anyway, BIG mistake! Suffered all day and even worse at night, so think I over did it. Will try again this week but perhaps stick to 2 days for now, been advised by GP not to drive so getting lifts everywhere.


Billy 5 years ago

VRT Vestibular Rehabilitation Therapy, takes a long time but it does work. One year later I am almost back to normal.


Lisa 5 years ago

I was diagnosed with labrynthitis almost 2 years ago and was told if the symptoms persisted for 12 months that I may have Meyniers disease and I was to go back to ENT in 12 months if I still had issues. My symptoms (dizziness, blurred vision and nausea) got worse but as it happened over a 12 month period I did not notice how bad it had got and accepted the diagnosis of labrynthitis as being correct. One month before my "12 month revisit" my vision was causing great issues so I had an eye test (just at the opticians). Here I was found to have swollen optical nerves and was sent straight to A&E/Eye clinic/ MRI scan and then hospital for surgery for a giany unruptured aneurysm,(I am very thankful for the suregry and am in great health now). My comments above are not posted to frighten anyone but merely to say please don't delay getting a second opinion or pushing for an MRI scan if you feel things are getting worse.


Nathan 5 years ago

I've had this for close to 10 weeks now. It started with dizzy spells that were giving me panic attacks at Uni and then it got really bad all of a sudden and I was basically bedridden for 4 weeks with the room constantly spinning, a feeling this someone was throwing my body around, a feeling of immense pressure in my head and a bunch of other symptoms I think were just caused by the anxiety that this condition brings on.

After 3 trips to the ENT, 4 to the doctor and having taken a few courses of antibiotics, serc, nasonex spray and sleeping pills I was finally able to get out of bed and do some light weightlifting & walking to start get my strength back. I got off the medication as soon as possible (except for the serc and occasionally the sleeping pills), because it's obviously not healthy to shove lots of chemicals into your system.

Now after 10 weeks it's still there (although not as bad as the 4 weeks I was bedridden) but because i've had it for so long the anxiety is almost gone. Even when the room is spinning heavily I can lie in bed, read a book to distract myself and not let it phase me because I know i'm not going to die, the MRI and blood-test results proved that to me. I realized that this problem is only as bad as the anxiety it causes you, if you fight the anxiety the condition becomes 10x less bad. I would recommend anyone with this to try and find a way of thinking without panicking when you get a bad attack, it really works.

I also found dancing helped a LOT with my balance and co-ordination, I have been dancing regularly because I think it helps teach my brain to balance with the signals from my legs and body instead of with the signals from my middle-ear, which makes walking around a hell of a lot easier for me.

I'd say this condition is 50% mental, because like I said the vertigo is only as bad as the anxiety it causes you. If you deal with the anxiety, the vertigo becomes much more manageable.


julie 5 years ago

hi everyone..just been reading all your posts,i'm the same i've had this condition for over 5 years now some months i don't notice it other times its there constantly.i've had balance tests and its shows that i've lost about 25 percent on my right hand side.ive had vrt but it's constantly there everyday,i can't even go out shopping or even for a walk i feel so trapped all the time..i just don't know what to do i've tryed everything...but recently it's got much worse it's progressed now to panic attacks i don't even like going out the house at the minuite.so i really do understand what you are all going through.


leila 5 years ago

like many of you i was diagnosed with labrynthitis over 6 weeks ago, ive so far been given 2 lots of different medication but still NO improvement, its driving me mad, i no longer feel like ME anymore, my illness came from no-where. i feel drunk ALL the time, this medication is NOT working. ive brought ear drops to see if that helps but to no availe:(((( im so fed up and depressed, can anynone recommend anything else to try please, i cant cope with this anymore.I just want to feel normal again, i see no light at the end of the tunnel, im 32 with 7 children, and what i can and cant do with them is so limited its not fair on them.


Billy 5 years ago

You people need to listen up. Start Vestibular Rehabilitation therapy right now. Keep doing it everyday. It takes a long time but it does work. You have to do about an hour everyday of these exercices. do not skip a day and keep doing them through the frustrating period. After 6 months I had noticeable improvement. It has been a year and a half and I am almost back to 100%. I'm in the high 90's. The problem I see on here is most people say 'I did VRT and it didn't work" well that's because they got frustrated and quit. See a balance specialist now and get on a VRT program now !!!!


Deb 5 years ago

Woke up 3 days ago very dizzy, holding on to things to get around the house. Went to my dr who diagnosed me with labyrinthitis and gave me 2 meds that are not working. Vertigo is with me all day, gets a little better when I lay down, but still there. How long until it goes away and I can return to work?


ronnie 5 years ago

I Woke up 3 weeks ago felt i was drowing and so dizzy all pins and needles hubby called doc who rang paramedics suspected tva had totally deafness in right hear 5 days later ended up at A&E and put through to ENT who advise lost of hearing and sent for urgent mri scan possible tumor today I am told no tumor that's good but have acure labyrinthinthius and the feeling are awful , now have to learn to live with deafness and the awful inbalance and sickenss and tiredness that I currently have .I have never experieced anything quite so debilating as this and with little support for the condition ,was interesting to read other people experience of this horrible condition


kat 5 years ago

deb, sorry to hear you have experienced it too. I went back to work after about 3 weeks, only for one day, then 2 days the following week until fully back about 2 months later. I felt totally washed out and tired very easily, I had been clear from dizziness for about 3 weeks and had a bug which lasted only 48 hours and to my dismay, the dizziness came back. I was so disappointed, it's another 2 weeks now and gradually going again. Think that it will always be in your body and pops up now and then when you least expect it. Pills don't work for me - just rest. Hope you feel better soon


cath 5 years ago

hi i ve had this horrible condiction for over a year now vetigo,dizziness etc I went and seen an ent doctor she sent me for an mri scan so am just waiting to hear back ,ive let the condiction control my life am really depressed i don't go out,its horrible and evil,sorry for being so blunt about it.


Billy 5 years ago

Are you people just plain stupid? You have permanent damage to your inner ear. The only way to fix this is thru a long drawn out process called Vestibular Rehabilitation Thearpy, VRT. It takea a very long time but it does work. Quit whinning , Bitching and taking meds that don't work. get on a VRT program right now you dumb asses !!!!!


kat 5 years ago

Billy -Stop selling VRT and go abuse another website.


Randi 5 years ago

I am 34 and my first bout happened at 26 with my second bout happening the follwing year AND my daughter was 6 mths old. I did go to Vestibular Rehab which helped tremendously. I have been on every med know. I suffer from depression, anxiety, over stimulation, and pretty much all of the above from this. It has been a complete mind over matter. But I still suffer everyday. The worst is you look fine on the outside and no one gets it. The one thing I do know is that it sucks but it has made me a stronger person. I do still work but have had to change jobs which I HATE!!!!!!! And my employer, (GOVERNMENT) has transferred me, and is discriminatory. I cannot find support groups in Central New Jersey. If anyone is interested in contacting me: Randi821@gmail.com


Billy 5 years ago

Kat, Go ahead and be dizzy for the rest of your miserable pathetic life.


Dee 5 years ago

First of all Billy - get a life your the pathetic one. People on here have enough to deal with,without comments like that!

I started with this problem ex 5 years ago.Lost my job find it hard to live life. Things started to improve 6 months ago, only to all come back 6 weeks ago following a bad head cold.

I am at my wits end, don't want to go out, find life reallt dificult at the moment. Anxiety and depression is starting to kick in now and I wonder will I be like this forever??

Have a good day fellow dizzy people


Tom 5 years ago

Dee , Have you tried doing VRT ? As brash as Bill is, he is right . VRT is the only thing that can help you. Worked for me. Took a very very long time but it does work. If you start a VRT program, It won't be like this forever.


Dee 5 years ago

Thanx Tom, I have appointment tomorrow with Audiology dept who I believe will assess me and give me some exercises....

Because I look normal friends and family don't understand why I won't go out. This is because I feel dizzy in shops and the more I walk my balance goes, always sway to the right, however if I turn over on the left when lying down I go dizzy (strange)

GP doesn't understand and makes me feel I'm some sort of neurotic....

May be the apt tomorrow will help??


Bill 5 years ago

All GPS have no clue about this. You are not Neurotic. Audiologist, Nuerotologist, will help with this. The Therapy is hard at first and can make things worse at first, This is why most get frustrated and quit, but you have to soldier thru, it takes time to see results. After a year and a half of daily exercises I am in the mid to high 90% range. All people recover at different times. The success rate for VRT is 95 %. So this is only a life sentence if you do nothing and just take medications. It takes hard work at first and then about an hour worth of vestibular exercices a day and that will squash this.


Tom 5 years ago

Read this It helped me

http://www.labyrinthitis.org.uk/


julie 5 years ago

hi ive been poorly now for 4 months it started with dizzy spells everytime i turned or looked up or down then i had a severe vertigo attack and collapsed and got taken to a and e during the next 2 weeks i collapsed a further 3 times i also had twitching muscles everywhere due to the anxiety that comes hand in hand with inner ear problems i really thought i was dying i had an mri which was clear ,i couldn't work at all this is the worse i have ever felt in my life then last week after 4 months of being constantly dizzy i have had a couple of good days , i have been through all this with no medication as the doc wanted test results fist . yesterday i was given cinnerzine to take i hope it works x


Matt W H 4 years ago

Hi all, it's been just under 4 weeks since I came down with this. I had just driven to home and felt slightly unsteady then all of a sudden, my eyes were all over the place, couldn't concentrate and the room was spinning and I vomitted. Went to the Docs and she said it was vestibular neuronitis and gave me some anti sickness pills. They seemed to work for few days but then one night I woke up with the room spinning and again I vomitted. Next day I went to the Docs (saw a different doc) and he said that I had Labyrinthitis but said it was just all the same!!! He prescribed me some serc (betahistine) which seemed to work for a week but since then i've had a cold which I think has exaserbated my condition. I'm back in work but I still have mild symptoms like my eyes are slow when I move my head or walk. Driving is ok in low level light but sometimes it feels like im on a rollercoaster. I know i'm fortunate to be able to go back to work so early but is there anyone here who has fully recovered within the 3-8 weeks its supposed to last for???


kat 4 years ago

Hi Matt

It does get better. Took me around 3 months to get anyway back to 'normal' however do have relapses every few weeks. Nothing to the degree it was ie room spinning, sick etc but do go light headed and quite often walk into the bedroom door when I get up as I go off balance. My memory has not been the same since and for some reason my eyesight has deteriorated which has always been 20-20. Not sure if this has affected anyone else like this or perhaps I'm just getting older!


Rachel 4 years ago

Have been feeling just like this for weeks and when i think back it has obviously been with me for a long time. I have had an operation to staighton my septum, diagnosed with allergies but never been told about this. I recently saw the doctor and he mentioned eustacien tube dysfunction which it could be but it does sound more like this as it also causes me severe anxiety and adrenal rushes and fizzy feelings in my hands aswell as nauseau. Thought I was dying. Glad in a way that i am not alone. I will see about this vestibular therapy but i cant guarantee i will get a diagnosis or a referral. Sometimes I find doctors don't consider all possibilities and are too quick to blame stress on everything which slows down getting proper treatment and causes problems at work. I do feel and empathise with you all, It is truly awfull.


babak 4 years ago

billy is right , VRT is the only solution for it , i have been dizzy for 18 months now and for last 4 months i have been doing VRT and i feel much better . it takes time but it works


Nicola 4 years ago

Omg! This is just how I feel! Constantly dizzy and unwell! I wake up in a panic every single day worrying about how I'm going to feel. It's such a horrendous disorder iv suffered for 2 yrs up to now! Every night I pray I will wake up and it's gone. No such luck! I really feel for everyone who is struggling through this disorder! Xx


andrea 4 years ago

Hi I have had this condition before a few years ago and today it has come back! It feels like my brain is in a boat on a calm sea and all of a sudden the sea starts to really move I can be just sitting still when it happens it feels awful i hate this x


christine 4 years ago

My GP has just diagnosed labyrinthitis. After collapsing at work a week ago I was taken to hospital and in retropect (now that I know all about it) I can't understand why they didn't suspect it, although I had/have none of the nausea or vomiting that so many of you mention. The worst part was the feeling I was dying followed by total lack of energy for 5 days although the GP suggests that's the virus rather than the condition.

I'm now worried about driving, flying and whether I'll be able to work again (teacher in a 'challenging' secondary school.)

I will try VRT.

Just grateful it didn't happen when I was younger (I'm 56)although I don't exactly have it easy (widow with four 'children' all boys from 16 to 23, but one is learning disabled, autistic, and Down's with severly challenging behaviour.


Rhys 4 years ago

18 months of all these symptoms, ringing in ears, extreme fatigue, deja vu, forgetfulness, spaced out, ear pain. Had blood test, MRI, ct scan, caloric testing got 23% damage in left lug, done vestibular rehabilitation therapy still no joy, I'm pretty sure it's reinfection physio says decompensation, now in limbo, life's hard to live and doctors can't do no more, worst condition ever ! I'm a 28year old male and my life feels impossible at times, just hanging on to the hope it'll get better, keep the faith people !


Dawn 4 years ago

symptoms for 5 months now,caloric test showed acute dysfunction in one ear,been doing VRT for 3 months,have good days & bad but definite improvement with balance.I am getting extreme fatigue now also,just got to hang in there I suppose.


Lawrence 4 years ago

3 months in now for me. Been doing VRT for 1 month now and my advice to anybody with this horrible illness is to get started on VRT RIGHT AWAY. Its slowly getting better for me now, good days and bad. Just remain positive, I know its difficult, but you WILL get better. best of luck to all.


ben 4 years ago

I had my first bout of Labyrinthitis at the start of 2008 and lost 60% hearing in my left ear. It lasted about 2 months and went away. 2 years later I had a really bad attack after quite a heavy night out with my company (I used to drink) this attack ended up lasting the best part of 6 months with at least 2 of those months off work. The company I worked for at the time were amazing and sent me to the doctor, they did all the tests they could and after being prescribed lots of drugs, prochlorperazine and betahistine and other serc nothing was really happening. I then came across Vestibular Rehabilitation Therapy (VRT) thanks to the doctor. It is very hard going to start with if anything it makes you a lot worse but keep on going and week 4 you will start to feel big improvements.

In January 2011 I had my last attack and have had a good year. I have had to lower my expectancies of myself and realise that I am more tired than others.

So in August 2011 I got my dream job and time to go to the city, everything has gone really well until 2 weeks ago I had an unexpected vertigo spin. I have had the last 2 weeks off work and the symptoms are disappearing but I am sat here with a throbbing ear and an uneasy dizzy feeling. I am hopeful of work next week as it would be nice to get out of the house and after all I haven’t actually spun for 2 days now but I have felt rotten for parts of today although all day yesterday was good.

So what advice can I share? what help can I give. Well unless someone has had this they don't seem to understand, the medical profession (unless your lucky, I was with some) don't seem to totally understand. Its a horrible condition, its really scary, your body does things it isn't meant to do, it is out of control and all you can do is sit down and hold on and fall asleep when its done. It is the first I have gone to the doctor about and they didn't have an answer! In public people think you are drunk, and it does bring on anxiety and depression. But my VRT is a life saver, I also practice Tai chi which I feel helps my balance and de-stresses me and I get exercise, running and cycling when I am not spinning.

So what happens next I mean hopefully this is only going to last 5 years right? Well I don't smoke, I don't drink, I don't take anything else, I don't drink caffeine or eat cafinated products. I am dairy and wheat free, I get exercise when I can and when I can cycle to work each day, don't watch to much TV, get regular breaks from my computer (I am a Software Engineer). I practice Tai Chi and I am starting a course on mindfullness to help with my stress, anxiety and depression. I take Ginkgo Biloba and oil of Oregano daily (not yet convinced on this – will give it a year) and I try to stay away from anything that will potentially make me ill.

Its a strange thing (Labyrinthitis), I cant find one thing that will set me off (a part from the starting sequence to Eastenders = seriously!) but I suspect its a perfect storm of all or some of the following:

Stress, fatique, tiredness, Cold/flu, high salt food, generally bad food.

Its also mentally very hard because one minute your fine (and very happy about it) and the next your not and very low about it and people do not understand how you feel. I would say make sure you have family around you and friend/s that understand. Keep positive, remove stress from your life if you can or find ways to combat it. Use your VRT and you will see it really helps.

Its hard work, one day I hope stem cells or some fantastic technology will fix this for me.


Dawn 4 years ago

Just coming out of the worst 5 days I've had in weeks.Just when I thought that's it,its sorted,bang.I have no real idea what caused this setback other than the presence of cold symptoms,which disappeared this morning along with my regained intense dizziness,ear popping etc...My VRT therapist did say that until I have fully compensated through VRT the slightest upset be it physical or mental could set me back.But this time depression hit me also,something I have managed to keep at bay till now,probably its because I was SO sure that was it over.I know VRT is working for me & this is just a set back,I just have to keep up the exercises even when at times they are the last thing I want to do.


Sally 4 years ago

I have had spinning attacks each morning and a CONSTANT feeling like I am bobbing on a boat at sea for three months. Was diagnosed with labynthitis by GP however ENT doc thinks it's to do with a couple of bulging discs in my neck C6/C7 and sent me for physio. Two physios do not think it's to do with my discs and that it is an inner ear condition......I'm told different things by different doctors. So scared I'm going to have this for years as no one can even say what it is for sure!! I'm 35 with two children and I also work. This is getting me really down :(


ben 4 years ago

Dawn Re: depression I would strongly advice this book its changing the way I look at life "The mindful way through depression".


ben 4 years ago

Dawn Re: depression I would strongly advice this book its changing the way I look at life "The mindful way through depression".


dawn 4 years ago

Thank you Ben I will take a look at the book you suggested.I am usually a very positive person, glass always half full and all that,but as everyone who's been through or going through this horrible experience knows,its very difficult at times.Maybe tomorrow will be a better day,I know one is round the corner.


Suzanne 4 years ago

Hello. I have suffered with this for the past five weeks and had symptoms of the flu aswell. Lots of people have mentioned on here about anxiety which is exactly what I have. I have been sooo worried and convinced myself I have a brain tumour. Ive been in tears with worry which is so unlike me and find it very hard to remain positive. I'm 29 years old and have been deaf in one ear since birth so I the swaying is quite bad. I find one side of my body suffers the most. I get a hot/tingling side of the face and aching arm too. Has anyone else had this.

Although from reading the posts it seems that this is quite a serious problem, it has helped to calm me a little and know I'm not the only one suffering.

Thank you for your posts and shedding some light on this. I'm getting married in August and want to be better

Suzanne


fi 4 years ago

this has been with me for 15 years, lm 45, l was very active, loved work, now it is a disability, l have wasted my time with doctors who know nothing !!! l cant even walk to fare with the dog, my world is trying to fight the right side of my body from falling over, my ear feels like l have a hot poker in it all the time,every nerve only on the right side of my head is acheing and pulling at me, now my eye aches and feels full.

My head feels like l have a Hawlks claw digging into my scalp, and l walk like lm drunk, have had 3 MRIs, back and forth to the ENTs, only now lve been told to teach the left side of my brain to get back into balance, l live in the country and it has been a long road for answers, please throw away the antidepressants and keep looking for positive feedback, life is to short ! Bill is right !


fi 4 years ago

oh and l remember how it all started, l had a really bad cold, l lost my voice and the infection made its way into my ears, my ears became blocked, that's when the damage started,l came home from work and went into a spin, fell to my knees and felt dizzy for some time,from then on the inner ear felt full and l had a slight unsteadyness,the attacks come and go for 15 years, but now while lm driving l had to stop the car, felt like l was having a stroke on the right side, felt like l was hit by lightning ! l went numbish and my sensors dulled, top of my head, eye , ear, and nose affected, very scarrey ! my ear inner ear has been damaged from all those years ago from a virus, fluid goes into the brain where it shouldn't go, affecting the balance sensors, also look at Menieres disease, of course anxiety, depression come with it, it also feels like a constant dirty hangover ! everyone is different, talk to as many ENTs as you can, its your body and no one else will understand what you are going through except the ones who have the same symptoms, virus, disease what ever you want to call it ! keep searching for answers !


Rebeccah 4 years ago

I started feeling dizzy when i woke up one morning. I decided to ignore it because i assumed it would go away but later in the day when i was lifting a hay bale my legs collapsed so i headed home and i started feeling sick and i had the privalege of spending the night with the toilet, if you get my drift. I went to the doctor the next day and he told me that i have Viral Labyrinthitis. It is extremerly annoying and is preventing me from doing many things. It is the middle of the school holidays and as i am 15 my friends and i have plans but i cannot do anything because i am too dizzy to walk in a straight line and i feel like i'm going to vomit all the time. I've been doing research to see what it actually is because i had never heard of it and I sure as hell hope it doesn't last for as long as it has for some people because i juat cant take it any more.


fi 4 years ago

If this persists ,first thing to do is to go to an ear nose and throat specialist,ask for a MRI to rule out any other problems, if they find nothing and you still experience the same symptoms for some time, you need to ring the Menieres society group that you may have in your area, they will suggest the best ENTs and VRT centres, they gave me so much help when l was so sick, and l mean very sick, they helped me through the dark days, they have councellors that have experienced the same disorder.

Over the years l have found chiropratic, and massage therapy really helped, and when l had to go out l would take Stemzine just to manage a little, also l had to change my diet completely, no alchol, cigs, salt, sugar, late nights, food as raw as possiable, all of this helps me.


Rebeccah 4 years ago

Thanks Fi I'll give it a shot :)


Sue 4 years ago

Just to add some to the above. I have had this since August 2005. Started with dizzy and room spinning out of control. I had never been sick. Just came out of the blue. Went to the emergency room, they did CT, blood test and etc. Said I had an inner ear infection?? Said it would go away. Well the spinning stopped after about 4 days. But, 5 months later still out of balance. Went to a ENT, did test, MRI (3), balance, and etc. Said I had a tumor. Well, I chased that for 3 years. Finally ended up at the Mayo Clinic in Jacksonville, Florida. They said I had a virus and it had destroyed 93% of the nerve in my left ear. Nothing, nothing can be done!!! Also found out when Doctor's don't really know....it's a virus. I have been to therapy, acupuncture, 3-different ENT's, 2-different Dr.'s of surgeons of the ear & brain, chiropractor, neurologist,Chinese medicine, health foods,Psychiatrist, you name it I have tried. They only thing that has helped me some is chiropractor. No medicine's have helped. When I am really out of balance...I go to bed, close my eyes until my head settles down. It too has robed me of a great deal of my life. I stay tired, my eyes bother me, can't go into crowds or where there is loud noise. I hold my husband's hand wherever we go. Sometimes I can only stay a few minutes. It is my left ear that is damaged and I have learned I can balance myself somewhat with my right hand. They call it touch balancing. The Mayo Clinic told me, I am like a twin engine plane, I have lost an engine and the pilot (brain) doesn't know it. So my brain is on over load trying to balance me. This effects your entire body because your brain uses your entire body to balance you. It's not like losing an eye and your brain will automatically use your other eye. It has left me with what they call motion sickness. I have been told several times that deafening my left ear has a great chance of healing me. Then my brain will recognize that my ear is not working and will use the right ear to balance me. However, they have highly recommended that I not do this for 2 reasons. I was only 50 years old when this happened, and I don't know what my happen in latter years to my right ear and they really don't know how the brain will react. The greatest thing I can encourage everyone to do is rely on the Lord and praise him that he is in control and all things happen for a reason. I also have to praise him that I am not in ANY pain. Just keep looking up and be thankful we can still do the things we do. God Bless


36nold 4 years ago

Hi iv got a this vertigo thing doctor is not sure if it Labryinth or meniere...iv been given drugs for my vertigo that are a daily thing these day....,i cant seem to find out what is causing my vertigo..i just know the best thing when it happens is Marijuana i didn't tell this to my doctor cause of the fear of him telling me its bad when it seem to help a lot...im talking about 50/50 marijuana sativa/indica and in small amounts 1/2 joint here there...also helps whit the eating and not vometing..the thing is im not sure about taking the drug the doctor gave me and if they don't work can i still smoke my small amount of marijuana? please ppl no blah blah about weed its killed 0 ppl in last 5000 years!and im NEW to weed :P and suport Medical marijuana has a DRUG!!


Donna 4 years ago

This condition is horrendous, I've been off work three months with Labrynthitis and it's the second time I've had it now. I am on no effective medical treatment and just doing VRT excersises twice daily. I've been dizzy, light headed and faint. Blurred vision in he distance and letters close up in a newspaper or computer look 3d and stand out. Vision goes worse when I try and focus on someone to talk to them and worse in a busy environment like supermarkets. I've had a horrible headache and sensations inside my head, photophobiaans sensitive to noises. I feel I am trembling inside and have a hand tremor. O have bilateral tinnitus, feel spaced out and not here like I am on drugs and difficulty concentrating. I don't feel safe to drive, have panic attacks and feel absolutley shocking. Tge only thing keeping me sane is the fact I made a full recovery last time and lived normally for nine years until this happened again three months ago. My heart goes out to all you suffering it really is a terrible illness with very little GP's offering any real help and family and friends can't understand either. I think this condition should be publicised more and taken far more seriously for the crippling long lasting effect it has, it's terrible.....


fi 4 years ago

lm going to get tested for MS, because this can also have the same symptoms.


RL 4 years ago

I had a similar case with all of you guys. I loss my hearing at exactly 11:30PM Monday April 9, 2012. Two days after I experienced extreme dizziness that leads to nausea and vomiting. April 13, 2012 Friday, I decided to go to hospital, because I haven't eaten nor drunk for 3 straight days I was confined in the hospital for about a week. After I was discharged, little by little I could walk without any support. Week two, I could walk but with difficulty. Its been a month now but still my hearing have not fully restored yet. Sad part is if I'm hungry, tired, stressed and if I'm in very hot place it triggers my symptoms of vertigo. My doctor told me not to take medicine that was the instruction when I got out of the hospital. He told me that my hearing will eventually come back but he can't say when. Until now, researchers still can't find the direct answer on what's the really cause of Labyrnthitis, Meniere's and Vestibular cochlear infection.


AW 4 years ago

l think its a viral infection that lays dormant like a valcano, and erupts when you least expect it !!


Julie 4 years ago

It has been nearly a month for me of being terrified, sick, hallucinating and hating the world. Family and friends definitely have no idea what is happening and think there is really nothing wrong with me.

The comments on here have been most helpful and now I know where to start. Will ring the doctor tomorrow and say that yet again I cannot go into work and perhaps he could suggest some VRT for me.


AW 4 years ago

l was off work for a month, l wanted to keep falling over and plenty of brain fog, you have to keep repeating your thoughts because its like you are drunk,and it feels like someone has spun you round and around and around then let you go!! but the worse part about it is the feeling in your head, like you have a hose stuck in your ear and toxic chemicles is feed into you, you actually find it so hard to make decisions and it is like your thoughts are in slow motion, and it takes your brain so long to process your thoughts, it is "monstrous" and trying to drive, well it takes so long to concentrate, and the trip that dosnt take to long actually takes forever, its like your mind has been possessed, in its in slow motion, l feel so sorry for anyone who encounters this disability ! head pain is a silent killer !


Shahid 4 years ago

I have the same condition, it helps me to sneeze and blow my nose. I usually induce sneezes by rubbing the bone in the nose with a twisted tissue/napkin. I know seems wiered, but works for me, might help someone else! God help us all!


Lorraine 4 years ago

Oh I feel better already having read all your comments. I think it is because I now know there are other people out

there who are experiencing the same awful symptoms as me.

I can pick out so many things that other people have found

helps - like, cutting down on dairy products, staying away

from gardens during high pollen days (I am convinced there is a connection with sinuses)keeping stress out of my life, cutting back on wine and coffee.

I value Bill's comments. I totally agree with VRT. I have been to all the Specialists, had the ENT test, MRI

bloods tested and the Epley Man. done and eventually

went to see a Physio at our major Eye and Ear Hospital.

He gave me the exercises to do and it has helped me to

take control of my balance. I am now in my 4th month of

this awful awful illness that makes you feel bewildered

and scared when out in Supermarkets or walking in crowds.

You may not look ill to your family and friends but you

know yourself how it is affecting your life. I feel like

I have aged 10 yrs overnight. The days when I am really

bad are days when the weather is heavy and grey. I feel

it in my eyes. The pupils in the eyes almost disappear

and my eyes get so sore and small. I have had all the

medications - Serc, Stematil and other anti sea sickness

tablets. They do nothing to clear this up.

I have found Niacin to be of some benefit and also benefit from blowing my nose regularly.

I will now continue with my exercises and will try to spend more time on them now that I have read all the

positive comments on VRT. Stay positive. L


anna 4 years ago

l had a CT scan of my sinuses which showed a large nasal spur, well let me tell you the symptoms which l have had for along time which was miss diagnosed.

l have had constant pain in the nose , cheeks , jaw, forhead ,top of the head, my ear , my eye, feeling very dizzy, fatigue, migraine headaches.

Now l have a sinus infection from it and l felt like l was going insane from all the pressure and pain and dizzyness, that is another medical condition that can have the same symptoms as Menieres, l going to have the nasal spur removed which lm told will be the end of all my problems !! thank god !


AW 4 years ago

lts pretty sad really, all l do now with my time is look for a cure for this illness so we can all get better.

l did have an out going fun life, and now l am looking every where for the person l use to be and wish the pain cloud would leave me alone.


Julie 4 years ago

Been over two months for me now and must admit I have had more helpful information from people on here than from the medical profession.

Still trying to find a local physio for the VRT and a seven week wait for the MRI but at least I can now tie my own shoelaces (only took me two months). At least I am getting my sense of humour back - I keep forgotting my boss's name and have a medical reason for it.

Thank you to the lady who started this link as you have saved my sanity.


Harmonica17 4 years ago

After reading the post I thought I would share with this group something that would take me on a 12 year journey. In the year 1992 I woke up one morning and decided to take my morning walk about 1 mile, during my walk I noticed that I had this slight motion issue, very slight but I did notice it, It frightened me and I rushed home, I then started to going to ENT's Nero Docs, Brain MRI's blood work, you name it I had it done, but no doctor could find anything wrong. Then about 6 months later I woke up one morning and it was gone! and it stayed gone until the year 2002, I came home from a trip about a 2 hour car ride and when I got to my house I stepped out of my car and there it was, the monster that I had back in 1992 had returned! I could not believe it, but this time I was ready to fight it, so with Insurance card in hand I started my journey, I've been to some of the worlds leading doctors, from heart specialist to Nero Docs to Blood specialist to the worlds leading ENT's and that list includes the Mayo Clinics and Duke University and the Dr. House of New York City Dr. Thomas Bolte who is really great. NO ONE to date has been able to find anything that would cause these symptoms, Here are the symptoms, I feel like I just got off a boat, nothing ever spins or moves but it feels like it's about to. I'm in a fog, off balance just enough to make you bed-ridden sometimes for minutes to hours to days and even months. It has slowly taken away my life as I once new it, I use to run 10 miles per day and work out 2 hours per day in the gym, I was always full of energy and traveled everywhere, but now I think I've really accomplished something if I can make it to Walmart and back by myself. My ears ring a lot, and sometimes I get a little sick feeling in the stomach, I've had my cervical spine looked out with contrast in an MRI to search for a clue, I do have mild stenosis, but the Docs tell me that it really is not life altering. I cannot tell you how many brain wave nerve test and MRI's I've ad over the years, but it has been a wild ride, it started when I was 31 and now I'm 52. My journey continues as I search for the answer to the big question,(What Happened?) I have found that drinking makes it 10 times worse, I've found that in my case sometimes Advil will help, I also take Klonopin, but that is all the meds that I take for this, Antivert just made it worse. I did find that driving will make the symptoms vanish for several hours, but when you stop the car it returns. I've been told that it is not MS, that is not MDDS, or BVVP. I've been told that they (the docs) Have no idea what this is. But hey that has not stopped me from trying to find the answer to this bizzare condition, One minute I can be fine and 2 minutes later I have to lay down. Beware the Docs who tell you it's all in your head, I tell them well I tell you what this feels like and this is how I describe this condition to them, it's like someone came up behind you and hit you in the back of the head with a 2x4 but you don't have the pain you just have that stunned feeling, kinda whacky feeling, Dis-equalbrium. I will try and keep you updated on my Quest. Until then try and relax. And don't stop searching for the answers to the condition that changed your life.


Harmonica17 4 years ago

I appreciate the email that I received concerning Lyme Disease, But I have never had a rash or a tick bite that developed into a problem associated with that issue, I haven't had fevers, My problem is a progressive one, what started out as being off balance just slightly has now developed into a full time problem, always there, just sometimes it's manageable and sometimes you are bedridden, you never know. I still remember what it was like to be normal, and that keeps me searching for an answer. Tommorow my FIFTH Nerologist. Who knows maybe this is the one that will be able to think outside the box, And that's what it takes a doctor who starts searching for needles in haystacks.


Harmonica17 4 years ago

Ok, now I have been to my fifth Nero and my 18th specialist. I had a one hour consult as he went over my scans and checked me out. Again, I was told this time that I may have Migrane issues along with cervical vertigo, but that I my balance was ultra senstive and that no evidence could be found except for the moderate stenosis of the cervical spine that I have. He recommended neck therapy and some muscle relaxers. So I'm not any closer to finding out my condition than I was when I went in. I have no idea what this is, but it is very hard to deal with. Now back to the drawing board for another round of tests and new Docs etc... I will keep you posted.


fi 4 years ago

it comes from the inner ear and they can not see what's going on unless you are dead, only then they can open you up and take a look l am afraid to say but its true !


Harmonica17 4 years ago

I know this to be true all too well. Somethings you just can't see. But that's the way it goes. The stats on the number pf people that go and see the doctor for this type of dis-order is staggering, 10% of the population, that's a lot of dizzy people. Where do you think the report is on people that have had this and passed away and they found out what it was???? It seems to be as hard to find as the problem itself.


fi 4 years ago

your symptoms are exactly the same as mine, and l have been to a lot of doctors that look at you like you have come from outerspace !! which is how you feel spaced out some days ! big spaces such as large shopping centres is hard for your brain to signal your body that there are boundries to keep walking straite, but my right side has lost the plot and cant comprehend, my inner eye aches all the time and is damaged as l have explained in my other posts, my condition started from a bad cold, virus which l didn't get treated antibiotics in time to fix the problem, the inner ear is very delicate and once the hairs are damaged theirs no going back you have to start training the other side of your brain with the excersises, because all your pain and energy has been concentrating on the dicky side, l donate money to the organization that is currently trying to find a cure for us in Australia, so l live in hope and try to educate other people about this condition, we have a Meniers group through out our states which is a great therapy group which concentrates on all balance and inner ear conditions, 15 years for me !


fi 4 years ago

good therapy for me is my furry little four legged friends !


Harmonica17 4 years ago

Update: My latest round of Docs for the last two months point toward Spinal Stenosis as being one of the culprits, as in the nerve endings in my c-spine. The other is some sort of inner ear damage that they cannot see. as far as medical test I'am out of options. Apparently according to my Doctors any further testing would only cause more harm than good. So until I come across anymore suggestions I will try to live with this the best that I can. I wish that I could have been able to discover the exact cause of this but it has proven to be very difficult. I have now spent close to "one million dollars" on chasing this problem and I'm no closer now than I was when I started.


HappyGurl 2 years ago

I have been reading all your sufferings and symptoms and I can't believe how little I read about VRT. I have been suffering for years with bouts of vertigo and the intensity of it just kept increasing. I am a personal trainer and it was interfering with work, social and sleep and all the other symptoms you all have been suffering with. The last time I went to the ER, it was really bad, after tests to make sure my head, blood pressure, heart etc were found to be in fine working order, thank God, the doc referred me to a physio therapist that does VRT. I call it magic. Incredible! no pills, no more suffering. I am free and clear. Now when I forget to put plugs in my ears in the wind, it will come back, I just go to see the physio therapist, have a VRT treatment and I am back to normal in less than 5 minutes. Incredible!!! Please try it, it will change your life.


Randa 21 months ago

In response to Jeanette's post, (although 2007), reinrdgag the effectiveness of the Earpopper, I purchased this device for year-roud allergic rhinitis. I had done a round of skin testing with my allergist who found sensitivities to cats, pollens, and molds. My symptoms were occasional bouts with vertigo, frequent dizziness resulting from eustachian tube dysfunction. She prescribed Claritin, decongestants, and Flonase. She also uses the Earpopper in her office and I can tell you the relief from the dizziness would be immediate,and the tubes would drain over the next two days. (It helps to sleep in an elevated position, also). I do not like using drugs because they carry the same side effects I am trying to avoid. She also suggested anti-inflammatory dietary measures such as fresh ginger (ground and boiled into a tea), the use of tumeric in cooking, vitamin C,quercetin, and the elimination of dairy, wheat and soy. The Earpopper can only be obtained by prescription, but she would notgive me one. Perhaps if I had persisted long enough, she may have, but my family physician readily did, since he used it himself. His warnings were probably the reasons that the allergist had: the Earpopper can create a momentary dizziness ifnot used properly. The company says that their product is totally safe, and will not rupture the eardrum. I use the Earpopper onlywhen I am dizzy. (I do not have hearing loss.) This amounts to once a week or once every twoweeks, depending. I will sometimes take a Claritin but that would be so rare, maybe once every three weeks, if that. Also, I am being treated by a chiropractor for neck and back problems. He does not crack the neck in his practice (not a safe practice,related to stroke, please google for more info), but uses an activator and manipulation. All designed to align the vertebrae, and also relieve blocked eustachian tubes. He does not make any claims toward curing allergies, he just relieves the symptoms, andprevents furthur degeneration in my neck.


Marcelo 20 months ago

Hi Paul,I thought I was nuts until I found your post today. For years I have been geitntg very bad headaches that I related to allergies. I get them mostly from fall to spring but still get them occasionally in the summer. Last fall I flew to Vegas in early December. I always have problems with my ears plugging up/extreme pain when I fly. This trip wasn't to bad but after a day or so my chest felt like a weight was sitting on it and I had bad headaches plus dizzyness. This didn't go away when I got home to Rotterdam, NY. Actually, it didn't subside until summer and now that it's fall, it has all started coming back. My doctor told me it was anxiety. His PA said he saw fluid in my ears and gave me a sample of nasonex which did nothing to help. My ears click each time I swallow. I can feel fluid move from one side to the other when I lay on one side and then rollover. I suffer from acid reflux which I believe is from the tons of post nasal drip I deal with daily. It seems to flare up when I am suffering one of these attacks. I feel off ballance and dizzy, almost like I'm a split second behind. I turn my head and it feels like im still moving in that direction for a split second after I stopped. I'm also exhausted all the time. I have tried nasal salines and they work to a small degree. Also Claritin D and Benadryl but they only ease the symptoms enough that I can somewhat function. Hot tea and hot showers help also. I love the northeast and really don't wish to move but if I found a place where these headaches would go away I'd be there in a heartbeat.


Sherri 14 months ago

My fiance' has this. He was off work for 8 weeks... bedridden because of it. Every time he would get up and move he would vomit or at the very least get very nauseous/dizzy, like his brain couldn't keep up with his movements. After he got past the worst part of it (less vomiting)... around 5-6 weeks into this, we started doing things that would force his brain/body to adapt to this damage/change in his inner ear. I would throw a ball to him while he sat on the couch... toss it to the left... to the right, etc... Force him to get dizzy so that the body would know what to adapt to. This helped tremendously. While he isn't 100%, he improvement much quicker and he was able to go back to work about 2-3 weeks after we started working on this. It is my understanding that if the brain/body never gets a chance to adapt, because you continue to lay around immobile or take meds(which didn't help my fiance' anyway) to conceal the symptoms, then it prolongs the recovery. So even if it makes you nauseous, if you can do so without throwing up, make little steps to help your body learn to adapt. Walk around the house, in the yard, close to home, exercises like tossing a light ball, etc. He still has a light ringing in his left ear and some hearing loss as well in that ear, but he's about 85/90% better than before. He didn't drive his work truck the 1 1/2 weeks after he returned just for safety precautions, but he's now fully functional at his job. We hope the ringing goes away eventually and hearing returns, but if it still hasn't after about 12 months there's a good chance that damage is permanent.

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