Labyrinthitis/ Vestibular Neuritis...Please Help

Thank you both for your comments. Like many I have been doing extensive reading on this during the hours I can look at a screen, and it seems it all is rather hit and miss when diagnosis or which specialist is concerned.. 

To be fobbed off with "anxiety" was frustrating enough but a 7 week wait to see an ENT was pretty annoying too.

Today I have been really crap, barely able to struggle around the house and yet just now its eased and I feel like a short walk.

Does this happen to others? One minute feeling like death, the next its still there but not quite so bad?

I have this from the moment I wake up but never knowing just how bad it will be through the day. I never imagined 4 days of this let alone 4 months so far.

Hoping all of you are recovering.

You can use saline solution every day to "unclog" nasal passages. But that won't cure the dizziness, which has to do with ear and eye being off balance.

Hi Marion,

I agree re: anxiety and I have spoken to the Dr's about this. I know they probably interpret "anxiety" differently than we as laypeople might and a few times I have said to the Dr's I would be more than happy to accept anxiety as a diagnoses but in common with many on here the only reason I may exhibit some anxiety is that I have never been as ill for so long before. Yes, a viscious circle. In my previous life I have never had stress, anxiety or depression but who is to know what goes on in the subconscious?

I am sensible and realistic in that on a bad day I know it can contribute to the vertigo - so I do relax, do breathing exercises, drink camomile tea and avoid the coffee.

Off to get some St Johns Wort tabs today!

And today is sunny and warm in Norfolk so, small mercies, I'll probably go and sit by the river!

Best wishes. 

 

Are u still on here...? Im going thru the EXACT same thing.

Hi fellow sufferers, what a terrible thing to happen to us nice people. My first experience was almost two years ago when I awoke, got up for work and fell over with the room spinning out of control; sound familiar? I made it to the toilet and vomitted for the next two hours and when I thought it had finished, crawled to the front door to unlock it and the security door whilst I was able. After this exertion, I crawled back to the toilet for another half hour and then called an ambulance. Ambos quickly diagnosed it as vertigo and probably VN, how right they were. Two nights and 3 days in ER (what a geat hospital system we have in OZ) and my friend picked me up and brought me home. I was required by necessity to use a walker in the house for two more days and then I drunkenly walked unassisted to the Torquay shops to get food. I am sure that most thought that I was rather early on the wine; I wish. Two weeks later I was as right as rain and no signs whatsoever, so there is hope for some. Unfortunately last Monday I was having a 9:00 am cuppa and felt the vertigo coming back. Rushed home and was still vomitting 6 hours later and feeling rather wretched. Here I am 3 days later and only getting dizzy if I do those things as described by others, looking down or up too quickly and of course left to right. I also noticed that when I blow my nose my left ear pops, probably causal? But I am getting better and want to give others hope that it should not, in most cases, linger as long as some of our fellow sufferers describe; to them I offer my wholehearted sympathy and best wishes for a recovery soon. Whilst in hospital two specialisit Physiotherapits worked on me using the head "throw back" treatment and whilst I was giddy for a while thereafter, it did relieve a lot of the giddiness within a short time. That's my contribution and as I am now totally exhausted just writing this, I'm off to bed :-)

Hi there! Finally, same case with mine. I'd like to start telling about my situation. It was two years ago when i felt like i was having a heart attack. I was with my girlfriend back then and we were eating at a restaurant then suddenly, i felt like i was going to faint. I told her things like I was about to leave here in this world, somethings like "I love you" etc, you can imagine. Then after i sat over a chair, relaxed my self and drank lots of water, i felt normal. After few days, it came back. And it went on up until this day. I went to see doctors of different specialties (GP, ENT, Neurologist) and all they told me was that everything is normal. So i went on with with my everyday life. Work and home on weekdays, and out with friends during weekends. I just fight anxiety everytime. I will just wake up at night, having panic attacks and extreme palpitations and what will i do is go to the hospital straight just asking God for me not to faint while walking since hospital is just near at our house. I experienced walking to the hospital barefoot because i can't think right during those sleepless nights and it still happens today it's just that i got used to it and i just drink lots of water. Same experience applies to me. Dizziness, ear temperature, anxiety, and you feel like you're going to faint. Everytime this happens to me now, i just think of not giving up with anxiety. I am not sure if this is going to end which obviously we the ones who are effected wishes to, but the only advise I can give you is to just stay strong. It's just not cool to think when the real deal will happen (heart attacks) because when you get used to it, you'll just think that it's just another palpitation attack or anxiety attack. Just live healthy. I started doing sprint trainings and at first of course it will suck harder than you think, but I'm feeling much better now. I bought a bike as well just to keep my body healthy and i eat healthy food. Light headedness does not come that often anymore and so are palpitations and anxiety. Hopefully, professionals can resolve this case as I don't want others who has weak minds to experience this. I'm sorry if there were grammar errors since english is my second language. And oh by the way, keep fighting anxiety and panics as these two are most likely the reasons you will give up eventually. Hope my situation helped.

Hello all,

I haven't been on here in a while as you may have noticed. I have tried to go through all your messages but there's just too many so I apologise for not replying to people individually on here or to the private messages. I think the best thing to do is to broadcast a general update on here and hopefully that will help people.

As you can imagine, anytime 'offtime' I get from this illness, I try to make the most of so I have tried not to think about this condition which also means I've stayed away from this website. But at the same time I know exactly how debilitating this is and how depressed it can make you feel and I know how badly I wanted reassurance from someone who had been through this when I felt like that so I thought an update was due.

I'll cut to the chase...I've still got all the symptoms and if anything I probably have more now than I did. But that's not necessarily bad news, in fact the fact that I am still able to do everything I could do before this 27 months after this first began is proof that this condition won't prevent you from doing the things you want to.

In the last 27 months, or more specifically, since my last post where I had just graduated from university, I managed to get myself a job and I have been at it ever since. The job has demanded long hours 10-12 hours a day etc. and has been very mentally challenging... and don't get me wrong, there were times at the start where I almost quit but I managed to push through and have been able to cope with it.

I have started to take part in sport to an extent, I have never been able to get back into full fitness like gym and cardio, but things like badminton etc. aren't too much of a problem. I have managed to go out with my friends and been able to drinkn (my hangovers and symptoms are about 10x worse than normal since getting VN) but it doesn't prevent me from enjoying my night out. I have been to music festivals with 100,000s of people around and enjoyed myself. I have managed long haul flights. I have managed to drive and travel for 10+ hours on my own. I currently live on my own in a different country. The list goes on and on...the reason I am telling you all of this is to let you know that I have done all of this in my current state which means you can too.

I have definitely had many hiccups along the way but I feel each one helps me a little. My anxiety had disappeared for a couple of months at one time which made all my other symptoms feel irrelevant in comparison, but it's come back lately and it keeps coming and going in waves. I still have my dizziness symptoms on a 24/7 basis at different intensity levels, my visual symptoms are there NON-STOP! And I have a whole host of symptoms (listed in my original post) that keep coming and going on a daily basis. I feel at least one symptom at some point during the day everyday.

I won't lie to you or sugar coat it, it is still a massive pain in the a** to feel all these symptoms and daily and to have to cancel plans etc out of the blue because of it and to constantly come up with excuses to not be able to go somewhere at the last minute and also feel that your colleagues etc are getting sick of you using this as a reason, especially at work, for not being able to do something. But that's just something I have to get used to.

I feel like this thing will never go away, but I also feel that everyone has a different threshhold to how much they can handle. Most of this is psychological in my opinion- in terms of how debilitating it can be. I feel if with time, you get used to it enough to be able to carry on as normal. And after 27 months, I feel like (even in the worst case scenario) I'm more than 65-70% better than at the start and a few months back I felt like I was 90% back to normal.

Anyway, I think I have gone on for long enough. If people are still active on this forum, focuse on the positive of my message because overall it is positive. VN makes you feel a lot worse than it actually is, just give it some time and force yourself to be more active and eventually, the symptoms become a dull noise in the background and you'll be able to do everything you want, with the odd bad day here and there..but hey, everyone has bad days!

Good luck to all!

Shishir

Hello 

I read your post and I am going through the same thing.I thought I was going crazy or even dying.What was your out come? I see that your post was about a year ago hoping you could give me some good information I have to go to the Neuro doctor in a couple of weeks and if I had some good information to go by mabe it would speed the process up. Thank You

All I can say is hang in there. It's going to get worse before getting better. Mine started after a plane trip in 2013. For a yr I thought I was going to die or wanted to die. It's a nasty bug in your inner ear that's causing it. It's better now. Still bothers me at times but not as bad. I have a low dose of Valium when I need it. Take it it helps. I haven't had to take it for awhile but I keep it with me just in case. I feel I lost a year of my life because of this problem but I'm back stronger than ever now. I still see an ent specialist every 6 months. I have hearing damage in my right ear because of the problem. 

Hi all,

ok, so I went on these forums when I was feeling awful after being diagnosed with Vesitbular neuritis and I promised myself that if I ever felt better, I would go back on and write a positive review, since so much of these forums are filled with so much angst. Most people who get better, never get back on because they go on with their lives without ever going on a forum again, so you end up feeling better in one way when youre reading these because you find other people who are suffering like you in these forums, but in another way, you read all of this stuff, and it makes you feel like you are going to suffer forever. So I am here to tell all of you IT GETS BETTER. YOU CAN HEAL. IT TAKES TIME, BUT BE SUPER PATIENT. I have a ton of advice so I am going to write up on here what it is. It took me about 5 weeks to get to a place of somewhat functioning, but I also was getting better from emotional exhaustion and whatever VIrus gave this to me completely wiped my body out and I was fatigued for a while after my dizziness started to get better.

First I will tell you what happened to me. I was under a lot of stress with a horrible boss and a really emotionally taxing job when mine hit. I actually had not felt well for several weeks, I had felt really fatigued, the most fatigued I ever felt in my whole life (and i have had mono). It actually really scared me. I know now whatever virus caused this had been activated in me. Oh and btw the way, I live in Chicago IL and am a 26 year old female with basically perfect health up until now. One night I told my husband i was feeling a little dizzy before bed, but nothing too bad, and then BOOM, I have a dream that i am spinning out of control and it is making me so nauseous that i want to wake up from it, I wake up from it and the room is still spinning. i have to go to the bathroom, I try to get the bathroom and cant, (I literally live in the smallest apartment ever and the bathroom is like 3 feet from the bottom of my bed) My husband tries to help me get to the bathroom, and I immediately start vomitting. I have never thrown up from motion sickness in my life, so this is violent spinning. I literally have to lay on the ground the rest of the night with a pillow strapped to my head and a belt around it so that i have any sense of gravity at all. I end up trying to sleep on my hard wood floor and am throwing up all night from motion sickness. I finally call my friend who is a nurse since it does not subside, she tells me to take dramamine and drink pedialite. I take dramamine, it helps enough so that after 18 hours of this, my sister and my husband literally carry me to the car to go to the ER, and I can actually handle a car ride laying down on the back seat , before the dramamine, thinking about going into a something that was actually moving was terrifying. I still feel absolutely terrible though and cannot even walk.

  The doctors at the ER diagnose me with VN. They tell me to take meclazine and steroids and say it should be gone in the next couple of weeks. I definitely think the steroids helped but this was not helpful advice, all the ER wants to do is save you in that moment which getting fluids and a diagnosis was at least somewhat helpful, but you need to either get on here or go to an otologist in order to get help with this stuff. So I went to an otologist and he said DO NOT TAKE MECLAZINE, unless you are absolutely so sick you will throw up. The meclazinen slows down the compensation process. The compensation process if what you all need to do if you have this. I will explain below what to do with that.Ok, so I literally am in bed for about 2 weeks, my dizziness is bad but definitely not as bad as my initial attack before, I can still eat, watch TV, etc. I take my steroids which make me ravenous and want to eat everything, but I am still not really functional. Like cannot even really take a shower or anything. The next week I start getting tinnitus where there is ringing in my ears, which apparently isnt supposed to happen with VN and so I go back to the Otologist, and he does an audiology test to see if I am losing my hearing, I was not thank goodness and eventually this went away. Then, I started to get super bad panic attacks in the middle of the night when I would wake up from dreaming I was spinning-- I read enough of these forums and researched it enough that this is NORMAL. Our inner ear is responsible for our balance and our bodies physiologically respond to our balance being off with PANIC. It is NOT your fault if this happens, and you are NOT going crazy, and you are NOT dying. Your body's panic system is connected to your inner ear, so your body is going to respond this way. I will give some tips about what to do with this in a second. I would recommend if you can help it at all (I know some people cannot) NOT going on benzos to help with your anxiety. This will slow the compensation process down because it suppresses the inner ear, so your brain will not compensate as fast. 

The way to know if you have Vestibulr Neuritis, vs BPPV is with VN your dizziness is usually pretty constant, like its not just when you turn your head certain ways, like BPPV. although sometimes you can get BPPV after you have finally overcome VN. But BPPV is specifically when you move your head one way or another, and then your dizziness comes. However, VN you will basically probably get a little swing of vertigo whenever you turn your head fast towards your affected earn even after you have mostly compensated and healed.

SOOO, people with VN, the first thing is that your inner ear as been damaged, basically your balance system has been shot and your brain has to figre out a new way to balance yourself again. Your inner ear will most likely never heal, but our bodies are amazing and they have a million back up systems, so now what has to happen is that your brain has to learn balance from only taking signals from whichever ear was not affected. This takes a long timeb(minimal 2-3 weeks)  based on how damaged your inner ear is. So there a few things that you need to know about this process. 

1. DO CAWTHOURNE EXERCISES. Your otologist will tell you to do these exercises every day. You can just google cawthourne exercises and find them. Do them once in the morning and once at night. These are exercises that will help your brain compensate faster. They will feel uncomfortable and not fun, but if you do them, i promise you it will make your recovery faster. If for some reason, you have done these for 3 weeks and you do not find yourself getting significantly better, chances are you either a. dont have VN or b. you may need a physical therapist as well to help you through this. 

2. If you can help it, do not take meclazine, or dramamine, or anything that supresses the inner ear. This also includes benzodiazapines, or any anti0anxiety medications. These will all make your compensation process slower. 

3. Drink a TON of water. 2 liters a day at least. This helps flush whatever virus you ahve in you out. I was drinking so much water I was peeing every five seconds which was super annoying.

4. oh ya, and if you can help at all, i would recommend just focusing on your healing for at least 2-3 weeks. It will pay off in the long run. A lot of people I read on here end up trying to push through work and what not and stress will make everyhting worse. I was lucky because I had just quit my job when all of this hit, but I was able to just basically clear my schedule-- I had no choice because I was not functinoing for three weeks basically, but anyhting that will alleviate stress, do it. It will save you money in the long run. I had my groceries delivered, I would not let friends come over who seemed to be stressful. I had to cut out anyhting that caused me any sort of stress for at least 3 weeks. This may not be an option for some of you, and that is fine, just try to cut out on stress in any way possible for a while.

5. MEDITATE. I never really meditated before in my life and did not really even believe in it. Meditation saved my life with my panic attacks. We can slow our nervuos systems down and control some of our anxiety, when we meditate and this was how I got through the panic attacks. Meditation honestly saved my life through all of this because I wanted to go on anti anxiety meds, but I knew it was going to slow the process. So, keep searching youtube until you find a meditation that you like. I literally had my ipad by my bed with headphones available at any time in the night in case I woke up spinning which happened to me a lot. Work on belly breathing and slowing your heart rate down when your anxiety comes. It can spin out of control for people. I have a friend who developed agoraphobia (fear of going outside) when she had inner ear problems because her anxiety got so bad. If we can laern to meditate right away, it will help you not to spin into something like this. The key is breathwork, if you can slow down your nervous sytem eough with your breath, it will know your body is not in danger. Deep breaths in through the nose and out through the mouth. Also, anxiety can cause diahrea, and irritable bowel problems. So if you start to get diahrea, it could be the virus you have, or it could be anxiety from your inner ear telling your body to panic.

6. DO NOT drink alcohol, and try to cut back on salt. Salt triggers the inner ear for some reason, so try to avoid salty foods. I did not like stop eating salt, but I was not eating burgers and fries during this period. I tried to eat a ton of protein and vegetables.

7. Force yourself to do things that will cause your brain to compensate-- so my doctor said like yoga, running, walking on the sand at the beach, anything that is forcing you to balance. This does not come easily at first, and you may need to just start with walks. I forced myslef to take a walk every single day even when I felt nauseous and awful. Your brain needs to basically take in as much information as possible about your balance, so if there is anything new it has not learned, it is helpful to do it. All of these things will make you SUPER tired. I remember I felt ok enough one day to pick up my apartment which i slike 400 square feet big. I cleaned up for about 45 minutes and it wiped me out the rest of the day. Literally took a 4 hour nap afterwards. THIS IS NORMAL. Your brain is working so hard taking in all o fthis information about balance, so you will feel super fatigued doing all of this stuff. SOme people on these forums, said to go about doing your normal every day life. I could not do that because whatever virus I had completely wiped me out, and I would agree if that is an option for you, except for if you have any added stress, stress can cause a dizzy spell.

8. One last random thing, after you start to notice your dizziness get better, then I would start to try to take little notes of what causese it to trigger again. It is most likely not random. I am not sure becasue it has not been long enough, but there are specific things that will forever cause it to be triggered. For example, when I was having a hard time sleeping, I took a z quil this week. I have been doing extremely well and have very little dizziness now, but I woke up with super bad dizziness again, which caused me to panic, which caused me to think I was spiraling back into this. I finally read the ingredients with z quil and it is an inner ear suppressant basically, and for whatever reason, it casued me to spin again. Soooo, there are specific things you have to pay attention to like--- not stressing yourself out too much, not taking z quil, or any medication for that matter that could possibly affect your ear, and getting enough sleep. these are all triggers for me to get dizzy again. Maybe after a while it wont, but we will see. 

9. Last thing, BE PATIENT with yourself. My husband had to put motivational posters up becasue I am not a patient person, and I started to feel like I was losing my mind with this stuff. VN is completely debilitating. I have not been able to drive now for over a month (I am on week 6), I have literally been in my tiny 400 sq apartment in the city like rapunzel in a tower for over a month now laying on my couch watching reality tv taking an occasional walk or doing an occasional outting. Whatver virus I had with this was also extremely debalitating. It caused me nausea, diahrea, and the craziest fatigue I have ever felt in my life. It WILL GET BETTER. I have a friend who went through this for over two years, and now she is better. She said it did not get better for her until she went to a physical therapist. I would try these exercises first by yourself, if they do not work, look into a balance physical therapist.

Ok, people, i just wanted to put a beacon of hope post for all of you on here. I read some of these posts and no one ever responds with positive happy stories of people getting better. PEOPLE GET BETTER! and then they stop going on forums and move on with their lives that have put on pause for so long.

WIth Love,

​Meredith

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Hi guys, about six weeks ago i had two vertigo attacks on the same day (this was the first time i felt this spinning feeling since I was a kid). First one was while getting out of bed after an afternoon nap and the 2nd was in the evening just sitting down. The following days were quite bad and I had to move slowly when changing position as I would feel like its gonna happen again. I went to a GP and he suggested i do ear syringing as I had excess wax in one ear whilst taking stemetil everyday. I missed a couple of days work and took a week or two off from gym and it seemed to have passed. I don't think I was 100% right but definitely was getting there and it didn't bother me at all (if i recall correctly some days may have been better than others).

After about 3 weeks feeling better it hit me again, first the pain in the ear started coming back and then one evening last week I started spinning again. Since then the pain in the ear was very bad and i went to ENT twice who both also said it was vertigo. He did all the tests were he pushed me down and pulled me up and i didn't feel dizzy at all. He recommended that I start taking Stugeron instead so I have been doing so for about 4 days. Since around that time I have been very tired and not lasting a whole day. When I've had challenges at work I haven't been able to act sharpely its just like im dazed most of the time, you might call it brain fog. Yesterday I also found that I was having trouble remembering a sequence of these events ie how long i had been feeling this and what happened when. Best i can explain, i was confused !!  It seems to have cleared up a bit today but not sure if this is to do with the new pills maybe or the vertigo itself.

Im getting quite frustrated as the ENT specialists are about 60 euro each time and although they checked me and everything I still am none the wiser and after reading online it looks like they should have at least told me whether i have VN / menieres / BPPV / or anything else. THey just told me that I should wait for the MRI which should be in 2/3 months to check what it is and take stugeron for 10 days. Obviously next week if Im still feeling the same im gonna call again to find out what to do next while waiting for MRI. Sorry for the long post.

Do you think I'm panicking too early at this stage seeing that i only had these feelings for two weeks / off for three weeks and now back on for another week ?

Any idea what this could be? I feel very frustrated at the moment because I seem to be getting a lot more information on the forums than from the doctors but at the same time its quite confusing as most of the symptoms show up in many things. Any help is appreciated !

Let me start by saying I have had Menier's syndrome now for over 25 years and have had similar issues but mainly with hearing loss and vertigo.  Over the last 2-3 weeks I have been expriencing the conditions you guys have outlined (crackling neck sound, brain fog, eye sight not right, bad tinnitus (changes tones) as well as the worst one which was everytime I moved my head I would get a popping noise in my ear (like popping your ear at altitude) as well as an anxious feeling (fluttering) in my chest.  All this has happened before and during the christmas holiday so I have had some time at home to really look into this and finally found something that has helped me. 

In doing my own research for Menier's I found a study done in the UK that pointed to the herpes virus as a possible cause.  Well I do have herpes but it can be any form of the virus that can cause these issues.  Anyways because of the holiday and such I had no taken any of medications for over 2-3 weeks.  So last night I had enough of this horrible condition and forgot I had some acyclovir (anti-viral drug) for my Menier's so I decided to take it and within 4 hours the popping and vertigo was gone.  The next morning my anxiety was gone and my head is back to normal with no crunching noise in my neck and no issues standing or turning my head.  I am currntly taking 800mg a day of acyclovir.

Hopes this helps someone.