Labyrinthitis/ Vestibular Neuritis...Please Help

Ears, nose and throat
1

Hi guys,

First time poster, I hope I can find people that can relate to my condition or help with it. This may be a bit of a long post, I would appreciate it if you would spare some time to read it all.

Condition: Most likely labyrinthits (In my 7th week now)

Background info:

2 months ago at uni when I was in the gym, I was exerting myself doing weights and felt something pop in my left ear. I felt really faint and headed back...over the next few days I had severe vertigo/dizziness/nausea. I also experienced my first anxiety/panic attack when i felt these symptoms, which to be honest felt worse than the actual symptoms. I went to the uni GP and she said I had labyrinthitis (though she did no tests). I also recall not having any flu like symptoms so I'm not sure how it could be viral labyrinthitis. Thankfully all symptoms vanished within 1 week.

Life was back to normal. However 3 weeks later, I was back home for the summer and had been back in the gym for a week or 2 when I felt really lightheaded and faint again. Sometimes I feel like this in the gym when I exert myself so didn't think much of it. I came home however and experienced another anxiety attack. The dizziness/vertigo etc was MUCH LESS severe than the initial attack 3 weeks ago at uni, however it has persisted for coming up to 7 WEEKS now.

Currently:

Over the past 7 weeks, I have had good days and bad days...good hours and bad hours. I went to the local GP who once again said the symptoms matched labyrinthitis without doing any tests. He prescribed some stemetil (which I took only twice as it didn't help and also because I have read everywhere online that it only slows down the recovery from labyrinthitis).

I tried just walking around, passing the ball about with a friend to 'retrain' my brain. However, the symptoms were still in the background and didn't really seem to disappear. But I did feel much better then than I do now.

For the past week, everything seems to have gotten worse. I have spent more time in bed than normal as my friends are on holiday at the moment and I'm not sure if this is the cause? As I'm no longer carrying on with things as normal.

Other info:

Since day 1, I have also had a popping sensation in my left ear every time I swallow.

Head feels heavy. Neck aches. Feel a pressure within my head/ear.

Though I have had anxiety attacks a few times, lately it feels like I'm on the verge of one all the time.

I also have other normal symptoms such as feeling nauseous, tiredness etc.

Very recently, it feels like my vision is a part of the problem too. My eyes feel very heavy and like I cant focus on things. Also, the last few days, I see little flashes of lights which aren't actually there (this has only happened about 3 times in as many days)

Note: I have finally managed to get a specialist ENT appointment, which isnt for another 5 weeks unfortunately, but better than nothing. I'm sure at that point, they will confirm it to be labyrinthitis or something similar as the symptoms all match.

Questions:

Is there anyone else in a similar situation as me? How are you dealing with it?

I have done some generic VRT exercises, but it doesn't seem to help too much. Thoughts about VRT?

What triggers your symptoms? For me it's been hot weather, shower, loud noises, bright lights, dim lights and more (nothing specific).

My anxiety seems to be triggered by anything that I think is abnormal, e.g. sudden tingling somewhere on my body, sudden temporary noise in my ears, sudden temporary dizziness etc etc. All of which is probably normal, but they seem to trigger anxiety when I feel like this. Does this also happen to anyone else?

Are there any tips to control the anxiety? I swear its a lot worse than actual dizziness.

Are there any tips to control the dizziness? Such as VRT or others. Is it better to stay active and feel worse for a short while or should I just stay in bed?

Any other useful information?

WILL THIS EVER END?? I have read some success stories, but will it really take months to years??

Is it also true that even if it goes away, it can come back any time in the future? This is what scares me the most as it seems there is no permanent cure.

I am getting seriously depressed about this as the past 7 weeks have been pure hell, I wouldn't wish it on my worst enemy!

Thanks for listening to my rant/story. I am looking forward to hearing back from anyone at all!

Thank you

sad

2

Hi there,

I had Vestibular Neuritis last winter and you truly have my sympathy. It is horrible and very disorientating as well as debilitating. It is great news you have a referral to an ENT, and I would strongly suggest pushing for referral to a Physio for VRT. It is unpleasant to do, but it does eventually work. I did between 5 and 6 exercises, each for one minute, twice per day. At first this would leave me feeling totally dizzy and out of it, sometimes for an hour or more, but over a week or two they would get easier, then I'd be given harder ones wink So, it takes quite some time - several months in my case, I believe the average is around 3 months after you've started.

I also found I had a lot of problems with concentration during this period and was much more tired than usual - both side effects of your brain effectively needing to re-train itself. I was advised that whilst it is good to get sufficient sleep, and that I shouldn't go to work and should try to avoid stress, it was good to keep busy and particularly to keep moving. I have 3 young children so that wasn't hard although stopping work for an indefinite period was very stressful. The exhaustion remained for another couple of months after all other symptoms went, so in total I was not myself for around 10 months, but that doesn't mean it will take that long in you - I suspect you are younger than me (I'm 41) so hopefully your brain will do a better job of re-training..

With regard to the anxiety/depression, it is very common with this condition as it is so unsettling, horrible and the length of time it is going to take is so unclear. I actually work professionally with anxiety/depression and would suggest that you go back to your GP to discuss that as a separate issue. There may be some counseling or other psychological treatment available at your GPs practise, or you could get a referral through the IAPT initiative, or you may decide that you would like to try some of the medications that are available. Either way, don't criticize yourself for this - it is normal reaction to an abnormal situation and is I agree a very hard element. I turned into total grumpy mummy and as a normally optimistic and bubbly person, I think everyone around me was staggered at how low I was.

Good luck!

3

Hi busymummy,

First of all, thank you very much for your reply. It may not seem like much, but every reply I receive makes me feel a lot better to know that other people have been through this too and it really gives me some much needed comfort and support. So thank you very much for that.

I should have mentioned my age, I have only just turned 23. Due to sheer frustration and annoyance of this condition, I may have left out some information from my original post in a hurry to put this post out there. If other people also reply, please ask me for anything I have missed if they require further info.

Regarding your reply, I am sorry it took as long as 10 months for you and I am hoping I recover sooner too. May I ask if you are completely back to 100% now? And if so have you had any repeat attacks of this condition since? You mentioned the doctors asked you to avoid work/stress, did your work give you time off? I only ask because right now my job hunting is come to a stand still, however when I do start working and if I am unlucky enough to suffer from another attack, it would be useful to know how to deal with it.

I have read a fair bit about anxiety/ anxiety attacks as I had never suffered from it before until I got labyrinthitis. I have read that medication isn't the best option (in conjunction with labyrinthitis) as it may delay the recovery process, however I will ask the doctor about this. However, as my appointment is still 5 weeks away and as you say you work professionally in this area, can I ask if there is a non-medicinal way to deal with it temporarily? I have read articles about 'belly-breathing' and such but am not sure how effective it is.

Once again, thank you for your reply and thank you in advance for any further information!

4

Hi shishir,

I was thinking you should go back to your GP to talk about anxiety as a potentially separate referral (just realized I don't know where you are - I was meaning GP as in the UK system, but basically your first line person). I doubt the ENT will have much to say about it that is helpful. In the meantime you could consider some sort of self-guided approach. There is the most evidence for CBT (cognitive behaviour therapy) but mindfulness has also been shown to be very helpful, and actually might suit your purposes better. The focus is on allowing yourself to be in the moment - not worrying about/going over things gone or that might come - but also not judging yourself if/when you do find negative thoughts come in. Jon Kabat Zinn is the leader in that field, although if you prefer a British accent for guided meditation you might prefer Mark Williams.

I would say I am myself almost all the time now, but I get more tired than I used to be. I think my recovery was slower than it might be for others because I couldn't avoid stress - having three small children is necessarily stressful at times, and also we had major childcare difficulties right in the middle of it all. Furthermore, my work, which I gradually returned to after about 3 months, is very demanding mentally, which in retrospect probably slowed things down. But in terms of positive mood, I do feel my normal self again now!

all the best!

5

Hi busymummy,

Thanks again for the reply. Sorry, yes I am from the UK (another missed bit of vital info) so I will bear that in mind when I see the doctor next. I will also look into CBT and the works of Jon Zinn, this information is much appreciated.

It is definitely reassuring to hear that you are back to almost 100% of yourself and I'll try and remember this whenever I feel down.

Just a side note, I forced myself to sort of throw the ball around in my back garden, almost a sort of therapy, to keep moving. I felt dizzy the entire time, but the anxiousness wasn't around (probably because I knew I was at home and not somewhere where I wouldn't get help). I did that for about an hour or 2 and I feel much better now (in terms of anxiousness and maybe even slightly to do with the dizziness).

Thank you once again for your replies.

In addition, I would like to ask everyone on the forums a couple more questions which I missed out in the original post. And I would also appreciate any further responses/stories of people who have been through a similar situation or are currently going through it now.

1- I mentioned in my original post that both times my labyrinthitis episodes were triggered, was in the gym (doing the same exercise). Is there any chance that it could be something else that I am suffering from?? I don't recall having flu like symptoms associated with a virus both times so maybe there is a small chance it could be something else, though all the symptoms point to the contrary.

2- I also mentioned that my ENT appointment isnt for another 5 weeks. Does anyone know roughly what I should expect? If i try and stay mildly active will my symptoms be manageable? Or should I think about going private?

Thank you in advance once again.

6

Hi there,

I'm now entering my 7th week of vestibular neuritis and this week has been my worst to date. I was managing to get about driving and even shopping. I am not taking any medication as for me it has not worked.A week last Tuesday I started vestibular rehabilitation therapy and although it was helping I am now worse than ever . My symptoms are dizzy and nausious but I have also started getting very anxious, cold clamy, shaking not sleeping, which is bad because I get so tearful. I do suffer with anxiety anyway so I am starting propanalol. My therapist said this is quite normal when you first start therapy and just do what exercises I can manage.It is the most horrible thing to have, but I have to hold on to the fact that I will get better eventually,I know it's early days yet .

7

Hi Paloma,

Thanks for your reply. Not exactly what I wanted to hear but I suppose its a more realistic situation. It seems like we're both at similar stages in terms of time (7th week) but to me it seems like you're doing much better than me, I can't even imagine driving right now for safety reasons plus I don't think I would be able to anyway. Similarly, the thought of going to a shop scares me...I went for a haircut a couple of weeks ago and almost had an anxiety attack just waiting there!

I am glad to hear that you have started on VRT (but not so glad to hear that you now feel worse off!), that definitely makes me feel more anxious for my treatment. Could you please please keep me updated on how your condition progresses with VRT (as you say its still early days but I would really like to know of it helps). In addition, can I ask how active a typical day is for you, i.e. do you work full time? house chores? etc. etc. just so I can compare it to my lifestyle at the moment which is very sedentary as I have just finished uni.

Thank you!

8

Hi Shishir

I have sent you a message, hope you get it

9

Hi Paloma,

Received, thank you.

Please stay in contact.

10

Hi Shishir- how are you feeling now? I am on my third month of this. I was wondering if you ever fully got back to normal?

11

Hi Meg,

Wow can't believe its been more than 7 months since I posted, crazy.

Good news and/or bad news I'm afraid...depends how you want to look at it.

My condition finally got diagnosed 6-8 weeks ago and it is VN. My docs said any rehab exercises wont make any difference due to the amount of activity and movement I'm going through in day to day life.

I felt much better in the middle...and then worse..and better again. Basically its a cycle, but with every cycle the bad episodes seem to be farther apart.

SO, compared to 9 months ago I am definitely better, BUT all the symptoms still exist at a lower level, with some days still being bad. I still believe the key is to carry on with day to day to recover completely.

I hope that helps smile

12

Hey Shishir- thanks for your reply. Who finally diagnosed it as VN? I was diagnosed with Labrynthitis from my regular doc and she said it just works itself away eventually. I actually just posted with my experience leading up to this. I was SO scared when this first started but I am finding it easier to adjust to each day. I thought I was in my third month of this but when I went back and did the math it's actually just over a month. I hope you don't mind if I ask you some questions.. but I don't really have anyone to talk to about this.

Did you feel lightheaded throughout this even when sitting down? Even as I type this I am getting the surges of weirdness pass through my body as if I am floating here. Do you have any recommendations for anything to help me deal with this? Did you feel as if you couldn't focus right on ANYTHING? It's affecting EVERYTHING I do.. I am miserable. Did you have a Cat Scan or MRI? I am so happy I found you out here on the web. It's scary that nobody really understands what this is like.

13

Oh I forgot to mention I also feel like at points a piece of my face goes numb, or that I am weak or losing strength but I honestly think this is my anxiety taking over.

14

I also forgot to mention that my ENT did a hearing test and then took only about two minutes to look in my ears, up my nose, and down my throat. He did not use a scope or take his time at all. He never even mentioned Labrynthitis to me. Is it possible to still have this without him even looking far into my ear? He just kind of did the quick peek to see if my ear drums were inflamed which they're not.

15

Hi,

I am 39 and for the last 10 days I have been so frightened because I too am experiencing some of these symptoms.

Firstly I was feeling just under the weather with a bit of a runny nose when my left ear felt like it needed to pop. I had a little rest for a couple of hours but when I woke I felt ok but still not right. I was talking to my daughter when all of a sudden the room started to completely spin and I lost control of my eyes! Oh my goodness I was petrified.

I obviously panicked and my husband came to assist me, I calmed down and felt ok but shaken by my experience. As I hadn’t eaten my husband thought maybe I should eat something and that it sort it out and that maybe my sugar levels were a little low. A couple of hours later I went to bed to be woken only hours later by the same thing, we of course went straight to accident and emergency at the hospital.

With very little examination I was diagnosed with having vertigo caused by a viral infection and sent home.

Since this point I have had the dizziness on and of and have on one occasion been able to lay flat in bed, the remaining days I have had to sleep sitting up as laying down just spins me out, I have been having heart palpitations when I have any dizziness, and I too have experienced the numbness in my arm and cheek. I have had blurred vision on and off and my eye are been very jumpy. I have felt generally disoriented am also having problems sleeping, as I start to drift of to sleep I am woken with the feeling of falling. I went into the supermarket to only have a sensory over load and had to walk around holding my husband’s arm.

I am sure I am not alone but obviously keep thinking the worst, I have attended A&E a couple of times in a panic, as well as the out of hour emergency doctors. They have said that my sensory tests are normal and that it really is labyrinthitis .

I am so scared at the moment and felt alone until I read these posts. Can any of you tell me if you too have had problems sleeping?

The anxiousness is a big problem at the moment and I keep crying out of fear what should I be expecting?

Nicky

16

Hi Meg and Nicky,

Meg first - My condition was diagnosed by an ENT specialise, I would recommend you push your GP for an ENT referral, the wait can take forever, mine took over 6 months with the entire process taking 9 months so do it ASAP. Labyrinthitis and VN are very very similar. PLEASE READ this http://vestibular.org/labyrinthitis-and-vestibular-neuritis - it explains the difference between the two quite well.

I felt lightheaded 24/7 when this started, eventually it dies down or you get used to it (due to your brain compensating for it) so it feels like its not there. I still have it on a daily basis, but I only really notice it if I try or if I am really tired. Majority of the time I feel like its not even there. And yes I felt this sensation sitting down, standing up, lying down etc. so position never affected it for me. Though sudden head movements did make it worse. I understand what you mean by focus, my vision felt terrible especially when I was on the laptop, there was a good website I found which explained the reasons behind it but unfortunately I can't find it right now. But to summarise, its just a secondary symptom of this condition and it too slowly disappears.

I had every test under the sun done..MRI, EKG, ECG, CATSCAN, VISUAL TESTS..the lot and ALL of them came back normal. After this my ENT asked for a balance test to be done, that was what turned it all around for me, this test lasts about 2 hours and tells if you if you have an inner ear problem, which was the case for me.

The facial numbness, trust me that is 100% anxiety related. I had always been a calm person before this with 0 history of anxiety, but the first few months after this condition it was just horrible. It got so bad I had to go to A&E because it felt like I was dying. Personally, I believe you need to go through this so that you realise what it is before getting better.

To summarise my recommendation would be

1- Push for a Balance Test ASAP. Do it today.

2- In the mean time do more activity than you have been for the past month, this includes stuff like walking around the house/garden. Throwing a ball up and catching it (for hand eye coordination and head movement). Cooking. Very mild exercise. Avoid as much TV/Laptop as you can to prevent you from sitting still. There is no doubt you will feel worse after doing this for a few days but that means that your brain is compensating for it. Continue to do this until you feel much better.

3- Do Yoga/Meditation/Breathing exercises for anxiety. I never believed in stuff like this and laughed at people doing it, but honestly this helped me so much at the start I take all my criticism back. It takes about 5-15 mins a day and you truly notice a difference.

4- Have patience and dont get depressed. If someone had told me this at the start my recovery couldve taken a couple of months instead of almost a year maybe. I had some really dark thoughts when this condition was at its worst, just tell yourself that the human body is a very complex and smart thing, it will heal itself eventually. Even if it takes a year for you, its still better than having it forever.

Nicky- All of the things I have mentioned for Meg should hopefully help you too. ESPECIALLY about the anxiety. For me personally, the anxiety symptoms were far greater than my VN symptoms for a large proportion of the time, it exaggerates all your normal symptoms. Please try out the methods to alleviate your anxiety, it will definitely help.

Personally, I didn't have too much of a problem with sleep, in fact that was the only time I felt free of these symptoms. I believe once again that is to do with your anxiety, each person has different types of anxiety. I couldn't stand crowds or hot temperature for example. The supermarket thing you mentioned happened to me all the time as well and its the worst feeling ever.

One last point, I have been told your age also plays a factor, so the younger you are the quicker you are likely to recover. But this isnt the sole factor, according to the doctors I should have recovered in weeks but once they determined the extent of damage in my ear they realised why it took so long. So fingers crossed, you two have less damage than me smile.

I hope that helps, please feel free to ask me more questions. I remember how I felt at the start of this condition and I know how much talking to someone could help. I will try to check these forums as much as I can, but if you want a quicker reply, private message me your e-mail and I can talk to through there as I check that quite often.

17

Hey ShiShir- just sent you a private msg with my email address. Would love to talk further. Thanks!

18

Hi,

Thank you for your reply.

Just knowing what I am experiencing is similar to others is reassuring, the dark thoughts of brain tumours etc. etc. drives me crazy which is probably setting of the anxiety. I suffer from claustrophobia and the thought of tests fills me with fear, I had a MRI for a problem with my back which was so traumatic it was horrible.

Thanks again x

19

Hey Nicky! I have the same thoughts of a

Brain Tumor or of the diesease MS. I've been experiencing this for a while now and am still not comfortable with the symptoms. The only time I feel relief is when driving a car. If I'm the passenger I feel naseous and off. Actually as I type this I am a passenger in the car and I feel awful.

You seem like you had the same initial symptoms as me. This all happened to me after being sick and under a TON of stress. How are you feeling today?

20

Hi Meg,

Today I feel like I’m on a knifes edge, trying to not move very much as I am afraid it will kick in and I will go dizzy again.

It’s funny you say about being sick, my family had not been well and I felt extremely sick mid-week before this happened, I too was sick but as there wasn’t much to bring up it was more retching than anything else, I was left with little broken blood vessels under my skin on my face it was so horrible, by the Friday this happened maybe it is all linked also.

Do you have problems dropping off to sleep? My eyes flicker and I keep jumping as I drop of to sleep? I managed to get a couple of hours of restful sleep like periods today, I would'nt say they were deep sleeps but enough to help. Of a night time when I have too much thinking time on my hands I freak myself out and just can’t rest.

N x