Labyrinthitis/ Vestibular Neuritis...Please Help

Hi Tiff,

Wow, it is crazy how similar our symptoms are, more so the timeline of how these symptoms evolved. I am sorry to hear you weren't able to get through the test, but please see if you can as thats the only conclusive method to give you a result. I do understand how painful it can be (though all the doctors said it was a painless thing, maybe we were unlucky) and I only just managed to get through it, the painful bit was only about a minute long but boy was it painful.

Your symptoms of your first attack couldnt be more like mine if it tried, I had the exact same feelings, sweats,hot/cold flushes etc while I was in the gym, but I just went straight back to my room instead of the hospital. I also had false motion and still do to this day but at a lesser extent, its most noticeable when I lie down on my side and it feels like all the objects are moving slowly, thats just nystagmus in your eyes and its part of the whole VN/lab symptoms.

I had identical ear clogged feeling, migrating from on ear to another, but this dies down over time. I would highly suggest you go to a different more recommended ENT if you weren't satisfied with these guys. Also, DO NOT DO NOT DO NOT take valium anymore, I'm really surprised they prescribed it for you! Valium helps with anxiety but as you clearly mentioned you can get addicted to it, not only that but the whole process of recovery needs you to be active and valium makes you tired. If they ever prescribe DIAZEPAM, stay away from that, this is usually given for dizziness and this may help you for a day or to but makes recovery in the long run much slower or stops it completely.

The biggest problem is the fact that overnight you would have gone from being active to being completely disabled from doing anything. And this is an 'invisible' condition, if people believe you're just making this up you'll feel even worse.

There is light at the end of the tunnel. For some people its recovery, for others like me its reduction of the symptoms so you can atleast carry on with day to day activities (I'ms till hoping I recover over time).

Key is to stay positive and keep active as much as you can. I also don't believe VRT will do anything for you at all at this stage as you are already quite active. VRT will only help people who have been bed ridden with absolutely no movement.

I hope this helps, if you need more help, PM me with your e-mail as I don't check these forums often.

Hey Tiff! Don’t worry- you’re not alone. We have almost the exact same symptoms as one another. I have been told by my GP that I have LAB but I am starting to believe I might have VN since I have no hearing loss either! I have noit had an EKG or a CT SCAN but I have had a full blood work done. I have not gone to the balance tests. Have you had an MRI?

It hit me out of nowhere as well. It was after I got a cold that my anxiety started coming back full force and then one day at work I lost it. Dizzy, the sweats, lightheaded, etc. I actually thought it was my blood sugar so I ate a ton of chocolate and it didn’t do any good. I didn’t go to the hospital; chalked it up to a bad anxiety attack and went home. But when I woke up the next day I knew it wasn’t right, and that’s when the long journey to recovery began 

I definitely have the false motion sensation. I find the hardest thing is trying to focus on moving things.. especially outside. I work in a school and watching the children running on the playground sends me into a spell. I’ve also noticed my triggers are my sunglasses (weird, I know) and florescent lighting. I am constantly moving although I am still as well so don’t worry.. I definitely know what you’re going through! Just like you I have aches and pains in my neck and shoulders! Also, I have pressure in my head, clogged nose some days, and my ears (especially my right ear) are always clogged. And when I swallow I head a weird popping/pressure noise in my right ear.. and upon talking to Shishir I realized that he has the same.

I completely understand what you’re going through and I am here if you want to compare more symptoms or just to talk. I found the people on here to be VERY supportive which is what I need. Everyone in my life seems to be so dismissive about the illness considering they don’t understand how debilitating this can be- especially since us sufferers look completely normal from the outside.

How is your vision through this? I find my eyes are weak and tired.. and sometimes I get “shakes” in them, so to say. I can’t focus on anything right.. it drives me mad!

Hope to hear from you soon!

Meg

hi shishir and Megb,

thank you both for replying. I don't have anyone around me who can relate to this at all - so it is nice to have somebody on here that knows how i am feeling! my symptoms aren't so bad when i lye down - they kind of ease up a bit when i am lying down. The lady who conducted my balance test managed to get over a half way point. i was there for 1.5 hours of the 2 hour test. The air being blown into my right ear set me off (i was wearing those goggles with the tiny camera inside), it set me off into a full blown spin and i felt as though i was going to pass out. i couldnt handle it any longer. my head was a major rush & having to drive 4hours back home after my test, it wasnt an option to push myself any further! she managed to see a weaker side throught the evaluation of the beginnning of the testing though (following lights, moving objects, dots being in different positions, etc). I couldnt bare doing it all again.It was too much for me.

Is there anything else you can suggest other than the VRT? I work full time, can walk around my house, workplace, yard, hang washing when i am feeling ok, cook & clean & drive short distances... do you think VRT will benefit me?? is there anything else they can offer in terms of managing or getting ontop of my false motion?? I was given stemitil when this first came about - though had it for a couple of days and stopped as it knocked me out cold for hours. I wil be seeing a specialist at the end of this month, & he said if i was still experiencing all of the symptoms he would refer me to a neurologist and get an MRI. he thinks it is now vestibular migraines. though i don't know. I think they are just grabbing at straws here. telling me it could be this - it could be that. Where i live, our specialist doctors fly out once a month. So, regardless of anything, i have to wait a month in between visits.

ALSO! how long did the pressure/fullness inside your ears last?? did you get fevers with them aswell?? or feel hot and flustered? They give me a headache aswell & at times, pushing on them makes them feel a little better.. though they ache constantly! I think this plays a HUGE part of how i am feeling. have you ever done anything or taken anything to get relief?? it is driving me insane. i am constantly rubbing them and poking them to get a bit of different sensation, as the aching is horrible.

My eyes sometimes feel "weak". though i could close them and goto sleep. when i am driving or walking around, i feel like i have to keep moving them and looking at different things to keep myself from feeling dizzy or funny in the head...

you are so right about everyone being so dismissive because i "look healthy" i should BE HEALTHY. like i am pretending. its not the case and it drives me mad! Megb have you still got symptoms?

have either of you ever felt as though you could float away?? that sounds strange, i know, though when i am walking... i often get the sensation that (please dont thnk i am crazy) my legs arent there or arent moving.. as i feel so lightheaded and strange.

its is crazy.

how did you get ontop of your false motion? or do you do anything to help you control it when it comes out of nowhere??

I appreciate your replies. I felt so alone in this illness until i read this.. it seems to be so common, yet so unheard of and noone seems to have any relief for it or ways to get over it all! the medical profession need to look further into these sorts of things!!

Tiff

Hi Tiff,

First of all, I completely got mixed up with my drug names earlier, it was Stemetil that I was meant to say that you avoid completely (looks like you aren't taking it anyway) as that hampers your recovery process.

The only problem with the balance tests for me was with the air blowing thing, surprisingly I had no problems with the camera or the white dot, maybe it was tougher for you as you are still in the early stages. With regards to the VRT, I will use the same analogy I gave meg- with your current 'high' levels of activity VRT will be useless, it's like a bodybuilder training by lifitng pillows, it won't do you any good! VRT is only useful for someone who is completely inactive. The best thing I can suggest for you is to very slowly keep upping the intensity of your activities. Bear in mind though, at this early stage you may just have to fight through the dizziness.

I STILL have the ear symptoms, thought not as much as when I first started out, I can live with it now. Unfortunately, the doctors don't think it's related (I have no idea how they came to this conclusion!?) and so I never found a cure for it, it just does down slowly. I never had headaches, but I had neck and shoulder pain due to stress, paracetamol help sometimes, but massages are even better. This can be controlled if you get your anxiety under control.

My visual problems were one of the more prominent and debilitating symptoms- tired eyes, strained eyes, blurry vision, unfocused vision, seeing flashes etc etc etc. I had to constantly move them around as well to not 'drift' into a weird panicky state if that makes sense. I tried to get lots of sleep and fresh air and keep my eyes healthy by not going on the TV/Laptop as much. I still have these symptoms too, but at a lesser extent.

Overall, all the symptoms I had at the start are still there...but much less severe now. Theres no medicine for this, no exercises and no cure which will treat it overnight. The biggest factors are time and the exercises you do to retrain your bran (which you seem to be doing with the washing etc.) AND do yoga/breathing exercises to control your anxiety, trust me that is the biggest factor of them all!

Hey Tiff.. Sorry this took so long to write back. I’m usually on my phone but it’s so hard to respond to the forum through my phone

Anyway, yes, I know EXACTLY what you’re going through and can relate to you. Shish has been a tremendous help with me as well- we’re all in this together!

I haven’t (and probably won’t) have the balance test done. It seems like hell from what everyone is saying. Honestly, the more you move the better it is. Yeah, it’s tiring.. but at the end of the day you’re in better shape than the day before. I haven’t done VRT, except online excersizes I’ve found, and they make me feel crappier.

Pressure/fullness is still here for me and I am working on my second month. My temperature has been permanently raised since this started, though some people don’t experience that. I think it’s because it’s a virus that is in us- so we’re bound to feel sick and bound to feel different things. My ears ache all the time too, so does my jaw. Do you get that? I take painkillers EVERY DAY for this.

I absolutely have to move my head around when driving or walking or I feel like I’m going to have a seizure.. not that I know what that feels like.. but yeah. I still have symptoms and they will probably stay for a while.

It’s funny that you mention the floating away. I feel that ALL THE TIME.. it is insane and scary. I sometimes forget I have legs.. lol!

How are you feeling now?

Meg

Hi everybody I had labyrinthitis nearly two years ago now, and have never had a day of, I had four days in hospital then recovered from the worst at home with dr prescribing me three or four different types of tablets, unfortunately not one tablet seem to make any difference, over the two years I have been back to the dr's a few times only to be give the same tablets what didn't work, I have a heavy feeling in my head and my walking is affected, if I don't concentrate when I'm walking it looks like I've been drinking, it's very trying and I don't no where to turn for help 

Hey there, I've had a bout of glandular fever this past week onto of this and it has made my dizziness/lightheaded worse! Like in back at square one again. My specialist has taken me off all medication, all nerve suppressants everything as he says that it will do worse in the long run and that I slim just have to live with it when it strikes up again. Did anyone take any natural herbs or remedies to ease the dizziness and drunken feeling?? If anything helps please let me know. As I'm now taken from everything, it all seems so hard!! He also wants an MRI though told me they would have to strap my head down. Have you had these and how did you cope going trough it knowing that you were spinning into ablivion when you lay still???? It made me a little frightened really and I'm not sure if I can do it. I'm onto week 16, and an longing for relief of any kind. Also, anxiety wise, what is a good place to start to get on top of this as the anxiety is definitely making it worse. Has anyone's fullness in their ear disappeared yet? The doctor said he could see fluid inside, though wasn't an infection. He said It will just take time. Being a full time working mum of 2, I can't deal with time. I cried when I went to the doctors ... I bawled my eyes out. I said please what can I do there just has to be something I am so over feeling like this!!!! Then he said I was depressed. What is it with doctors ?!? 

You can email me at tiffkajewski @ hotmail dot com

thankyou  

tiff 

You are not alone!!! I have had the diagnoses of labyrinthitus for 4 months now. Been to about 7 doctors visits. Eye, neurologist, ENT ect. I to did not have a cold or sickness before my episode started. I was working one day and I started to feel dizzy as well. The next day was full blown vertigo for almost 2 weeks. When that left I still felt off everyday. I found that by exercising in general helps immensely however it's always there. I am also doing vrt exercises and it helps occasionally. I had a months wait to get to see an audiologist to have an ENG test. She confirmed that I have lab and said it could take another 6 weeks of vrt twice a day. No medicine for me because she said it slows down the healing process. She said the medicine is good for the first couple weeks of vertigo only. I to have had anxiety attacks in the past so I can relate. Just remember that it's only a temporary issue. Besides knowing what u have shoukd bring some level of comfort. My stuff is always bad in the morning and clears up a bit in the late afternoon. Caffeine, nicotine and chocolate seems to make it worse. I am also awaiting the day that this crisp goes away. I have good and bad days as well. Hang in there!

Hi Shishir and fellow sufferers :-)

I have had Vestibuar Neuronitis since 2009 and its still as vile for me today as it was all those years ago when it started.

I was 40 when I was diagnosed and I was told that my brain will compensate but my docs would never tell me how long it would take and now I know why...haha 

For me I am just getting by and hoping that if I allow enough time to pass, I will get better but as the years have gone on I am sure I am just kidding myself. I flit between 75% and 95% of the old me.

I pretty much will do my best to avoid anything that will make me feel off balance and dizzy.

No more Gym (Treadmill Travel Sick)

No more supermarkets (I feel sick the moment I step in side)

No more queuing (If I stand still for too long...I sway inside my own skin)

No more motorway driing (My eyes can't cope with the visual business)

No more cinema (The big screen makes me vile)

Don't get me wrong I do do these things in and out but they do make me vile and I certainly don't want to put the dampner on things but VN and Labs and I think it is one of those things younger people get over easier than older people. I'm in my mid 40's and I am convinced my brain is too lazy to compensate.

I'd love to share notes/ cures with all of you :-)