Labryinthitis newbie

Ears, nose and throat
1

Labyrinthitis sufferer. Symptoms include severe vertigo and dizziness.

I guess I just want to feel I'm not alone in this. I'm in my 7th week of GP confirmed Labyrinthitis in my left ear. Woke up one morning with the room spinning so I visited the GP next day who said it could be Labrynthitis, but my symptoms subsided for rest of the day so I thought short lived ear inflammation. No such luck, next day was back again. I self diagnosed Labyrinthtis with the help of a ENT friend who told me to not take any medication and try do normal stuff as much as I could.

So for the last 6 and a half weeks (with vertigo, dizziness, thick spaced out feeling but thankfully no sickness) I've been randomly taking medication when it got too bad and have tried to go to work (I'm a hairdresser so it's really not easy to do with dizziness) but did feel I saw improvement with being up and about rather than being in bed.

Returned to GP last week and he properly diagnosed me with a Nystagmus test on my eye confirming the virus was still active, he also said i should keep taking the drugs (prochlorperazine) to ease the symptoms, but i feel like i've been worse since taking them consistently. I was having a fair amount of respite from the symptoms towards the end of the day when I'd been up and about most of the day, and now I'm just hitting the point of frustration feeling like I'm never gonna feel normal again, like i take 5 steps forward and have some ok days then 4 steps back when i have a bad day. Today is a bad day and yet again I'm canceling my life because I feel too dizzy to even function normally.

This whole thing is just really getting me down and i keep being hit with wanting to cry all the time because of it. I'm normally such an active person and due to go on a 2 wk holiday to Canada in 3 weeks. I already missed one trip because of feeling crap.

I know 7 weeks is a small amount of time compared to some but my tolerance is shot to pieces and just wanted to talk to people in same situation.

Thankyou

2

Hi Angela.  Just to say I really feel for you, having had labyrinthitis and also postural vertigo on a number of occasions.  Really hope that the virus will just go away, as it has always done for me in the past.  And fingers crossed you will get that holiday in Canada too.  Has the doc said anything about flying?  Sometimes they recommend that you should not do so, so be careful eh.  All best to you.

3

Thankyou.

The Dr just recommended chewing gum on the plane (which i do anyway) and said no bungee jumping (which i wouldn't so anyway!) but no flying warnings thankfully. My concern is more just even getting to airport and feeling s**t when I'm over there sad

How long did you suffer for? Did it go away as quickly as it came or did you have to do VRT?

4

Hi Angela811,

Sorry to hear you aren't feeling great. I know how you feel! I was diagnosed with Labyrinthitis on April 28th and the worse of my symptoms subsided just over 2 weeks ago. 

Similarly to you, I had no sickness but a chronic rocking sensation which was more evident when I was stationary. I also experienced the thick/muzzy head feeling as well as a magnitude of other unpleasant effects and although I do feel better, I still don't feel 100% myself. 

On a positive note, you will get better and the dizziness will subside and your balance will return to normal. Unfortunately, it can take a while and Labs can be known to display residual symptoms for upto 1 year.

You are right about remaining active. I'm not sure if you've been advised on VRT but you have no doubt read about these exercises. I found these helped, but to be honest, ANY exercise that you can manage will have a benefit. I started yoga since Labs (never exercised before ever!) and I've found this helps keep my anxiety down and the positions improve my balance.

Also, the advise you had re medication is correct. I refrained from taking any suppressants as it can prolong recovery. That said, 2 doctors and my ENT advised taking a small dosage of anti-depressants (SSRI's) can really have a huge benefit in those with Labyrinthitis. It sounds alarming and unease carry but it is thought SSRI's calm your nervous system, of which your balance system relies on.

Right now, I struggle with my energy levels. I've never felt so tired like I have done for the past 3 months and that, together with that muzzy head, is something I'm still struggling with. On occasions, my vision can play tricks on me, particularly if I stare at the pavement, or a busy pattern. I'm pretty sure my anxiety can bring on that sense of imbalance, too! Strangely, my alcohol tolerance has halved. I've never been a big drinker but it seems 1 sip goes straight to my head!

My best advice to you would be to maintain that level of activity - perhaps even try yoga, or swimming, both great for balance. Also remember to relax, though. Your body will always appreciates a nice bath and an early night.

Where you can (and I know it's a lot easier said than done), try to ignore your symptoms as much as possible. Not paying as much attention to them certainly helped me.  Too much focus isn't good!

Lastly, try to come off the medication and re-teach your brain to cope without the tablets. It's supposedly the reason our body doubles up on some organs, because most of the time, you only need 1 to function. Your ears are the same. Your brain and body can work with just 1 - it just needs to learn.

I found Labyrinthitis really hard to deal with. Like you, I'd completely break down, but these things are sent to test us and however unpleasant, it isn't a death sentence. It's also made me reevaluate my lifestyle and encouraged me to do some exercise, so some positives, I suppose!

I hope I've given you some comfort. Just hang in there! Keep us updated with your progress :-) take care.

Ashley x

5

Thankyou for that reply.

Yep i too feel like im on a boat or a funfair ride sad

Fortunately I can't say I've had much anxiety with it to the point of physically manifesting. Have suffered with axiety before so still have some medication. Trying to go to bed early and stay hydrated etc and healthy, on my feet at work so guess that helps instead of being sat a desk. 

Really difficult to explain how it feels to people at work cos i look fine, just a little pale but im having to explain yes I'm still sick 7 weeks later and have intermittent days off just for the dizziness.

I'm gonna stop the medication and do some VRT exercises my dr friend gave me.  

I think i've just had a really bad day today and that makes it harder to see any end to it. x

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I've had it x 3 times, and postural vertigo x 2 times but it has always gone away within 2 weeks.  Do hope you manage to get away OK and that you will feel OK for this special holiday.  Take care.

7

Hi Angela, I too am in my 7th week. I have had several tests done an MRI and MRA , a series of hearing tests and a VNG. my right ear is 67% weaker than the left. like you I also have that spaced out feeling. hard to concentrate. I've been doing vestibular rehab therapy and that has helped quite a bit with my balance. unfortunately it didn't do anything for the dizziness. at least it doesn't feel like it. I try to keep very active even though I don't feel like it. I just got back from a vacation to the beach and like you at first I was apprehensive of even going but I am so glad I did. I don't know if it was the ocean or if just enjoying myself and taking my mind off of it but I truly felt better. my dr. advised me to not take any meds. he said it would just prolong the recovery. I did take meclizine the first week which was the worst  of the dizziness. I know the feeling of frustraion with this, I half joked with my doctor saying any longer and I'm going to need depression medicene. hope you feel better and you'e not alone. go enjoy your vacation.

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Hi Angela,

I have just got over this horrible illness (16 weeks later).  You're doing the right thing by keeping active, at the begining I could only walk a short distance and always had someone with me, brave of you to oo to work.  I read from various source from early on not to take any medication as this could hinder my brain compensating, this was really hard but I pushed myself on a daily basis often suffering horrible headaches and major anxiety.  I also went one step forward and one back but finally it did improve (around 14 weeks)  There is light at the end of the tunnel although it hard to see sometimes, I hope you can manage your holiday and be symptom free or at least able to funtion to a near normal state soon.  Take care.

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Hi Angela

I'm just on week 17 now and much better than I was. I still get woozy/drunk feelings more so when in tired or done too much too quickly. I'm also extremely tired but have also recently been diagnosed with chronic fatigue syndrome. 

I'm still taking betahistine as that increases blood flow to the inner ear and brain and both my neuro physio and ENT consultant recommended it. I am on a very low dose though. It does get better, at week 7 I was still very poorly and not going out much etc. most days now I can ignore the dizziness as symptoms are minimal anyway. You'll get there. My neuro physio said to me "stroke a bruise and over time it will heal well, continually poke a bruise and it will get worse before it gets better" by that she meant do bits but don't over exert yourself. Know your limits. There's a fab Facebook group called labyrinthitis support which I've found invaluable while I've been poorly. Take a look. 

Babz xxx 

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Hi Babz36,

I'm at the 3 month mark since being diagnosed and as mentioned above, I still don't quite feel myself however, I am a lot better than I was.

The only real symptom I am struggling with now is the fatigue. No matter what I do, I feel exhausted. This usually goes hand-in-hand with the muzzy head although I don't always feel this. 

Having looked online, I can see CFS doesn't usually get diagnosed until the 6 month mark, but I am pretty certain that I am suffering with Chronic Fatigue myself.  Do you have any knowledge as to why this illness follows Labs? Also, what do you to stay awake and keep your energy levels? 

Is it too early for a Dr to diagose CFS do you think?

Thanks

Ashley x

11

Thankyou.....

Yep I saw that and joined it already smile

Has the betahistine definitely worked for you? Seen a similar product main ingredient: Vinpocetine which claims to exactly same thing....I'm so desperate to feel normal even just for an hr that I'll try anything! xx

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I think the betahistine has definitely helped me. So may be worth your while giving it a go! It is such a debilitating illness to have made worse by the fact people can't see it. I find keeping well hydrated, eating regularly and pacing myself stops me feeling rubbish. 

As for the CFS I was poorly with that before labs. I'd been backwards and forwards to the Drs with tiredness, repeated sore throats etc. I'm being referred to physio for graded exercise therapy which is meant to help. X 

13

Hi Newbie here

Ive just been off with Labrythitis for 3 weeks. Its horrid and i have a lot of sysmpathy for fellow suffters! My docter has been very little help :-(

Im starting to feel a bit better but ive found im super anexious when i leave the house. I see some people on here have headed back to work. Would you recomend? It seems if i want to wait till im 100% i could be home for a very long time!!!! the tinnitus comes and goes depending on wherther im outside of sat at home chilling. I feel pretty wobby, weak and nauseous most of the time and im taking prochlorerzine. Few questions.....

- do people recomend continuing with the meds

- did removing ear wax help at all

-Do people work through this or does work make it worce

Please tell me this will end?!!

14

Hi there, I am on my 15th week of dealing with labryinthitis. my first week was the worst. I couldn't get out of bed, I ended up in the hospital for 3 days bedridden and being pumped full of meds that didn't do anything except make me sleep. however as time went by and with the help of therapy it has gradually diminished to where most of the time I don't really notice it. there are times occasionally where I feel a bit dizzy but nothing to where I started at. I had tinnitits on and off too. I don't think that has bothered me for about 2 weeks now. I have noticed that too much caffiene ( unfortunately I'm a extreme coffee lover) not enough sleep and too much stress all seem to worsen the dizziness. I don't know about you but I also felt like my head was foggy. kind of like that feeling when you have the flu. that has lessened quite a bit as well. my E.N.T. told me to gradually stop taking the meclizine that my family Dr. prescribed, he said the longer I'm on the med. the longer and more difficult it is for you to recover. I was also told by the E.N.T. and the therapist that exposing yourself to busy places like the grocery store and places like that wil help retrain your brain into finding it's new center of balance. the one exercise that I thought worked the best was holding a pencil in front of my face then standing with one foot in front of the other and look side to side then up and down at the pencil never taking my eyes off it. then do the same again but this time stand on one foot. it sounds silly but when I first tried to stand with one foot in front of the other I almost lost my balance. I truly didn't realize how off balance I was. will it end? I sure hope so. personally I do feel like I am getting better, it's slow but it is in the right direction. My Dr. said it usually takes 4-6 weeks but as you see all the post on here, that doesn't seem to be true for quite a few people but with any luck you'll be in the 4-6 week range. hope you feel better!

 

15

Thank you soo much for the reply!! Its been really helpful. Im now consentrating on exposing myself to re train my brain. As I managed all of half an hr at work today. So im going to take it a day/hour at a time. I think its getting used to that dizzy feeling you get when your in a busy place or super market. Ive been focusing on scanning the shelves and turning and trying not to panic when the dizzy feeling takes over! I can totally relate to the fuzzy head feeling!!!! I hope I can get some of those exercises when I finally get an appointment with the ENT.

Has anyone tried Diazapan to help with the anexiety in work or busy places? Think Im going to continue with trying to remove the blockage in my ears and accupuncture seems to help a little too.

Hope you continue to feel better too :-)

16

I suffered the exact same symptoms you describe on and off for 10 years sad I accidentally discovered that dairy products, which I'd had every day of my life, were the cause. It's so hard to avoid milk products, they are present in the most unexpected foods, including medications. I'm so highly sensitive that I react with vertigo even when I have the most minute amount. For the last 20 years I've had very few episodes and when I have, I've always been able to trace it back to something I've eaten. Thankfully though, It goes away within a day now that I am vigilant about excluding dairy. It's easier to avoid now because it's a named allergen on packaging though in my case i can't eat anything that "may contain milk" when the food is produced in a factory that handles milk. Go for vegan products and if you eat meat buy the actual meat rather than processed stuff unless you are sure it doesn't contain milk.