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Original poster

Labyrinthitis! Anyone else been through this hell?

41 replies

aurorasky · 11/10/2014 17:46

Day 4 and still totally incapacitated. Violent room spinning when I move my head, can't get out of bed and I'm so worried about how long this will last. The GP did a home visit on Wednesday and I have pills for the nausea but they are not helping with the vertigo.

Anyone have experience of this weird condition?

OP posts:
bluegardens · 11/10/2014 17:51

Yes. It's awful. Don't think there is much you can do but wait it out. I hope it passes soon Flowers.

alwaysonmymind · 11/10/2014 17:58

I have had this twice and it is just awful Hmm. DH called an ambulance for me the second time, I thought it was a stroke.
Anyway the GP made a home visit the day after I came home as the tablets weren't working. Apparently some tablets work better than others so maybe you need to change? I had to have 3 different types until they worked.
Take care. ThanksThanks

Original poster
aurorasky · 11/10/2014 18:03

Thanks for the flowers :) How long did you have to wait? I have a job and a toddler to get back to. Luckily my Husband has a few days off between shifts to look after him and my work were great when I called in sick. I'm so scared it never goes away. Seriously, I can't stop the spinning feeling and my eyes are zooming from side to side (nystigmus) uncontrollably at times.

OP posts:
TheOneWiththeNicestSmile · 11/10/2014 18:06

Oh you poor love Sad

I had one bad attack once (it struck while I was driving which was tricky) which made me actually throw up, & then I had to lie flat for hours, but it did subside.

Subsequently I had a few more minor attacks but a friend who has Meniere's recommended vertigoheel tablets as a preventive thing; the next few times it started I sucked several (they dissolve very quickly) & the symptoms stopped.

With the severity of your current attack they probably won't help you now but it might be worth trying them in future?

dimsum123 · 11/10/2014 18:07

I've had this. It's awful. You have my sympathy. I was actually physically sick the last time it happened.

But don't think there's anything that can be done. I took some sudafed (nose spray) last time which helped a bit.

ChippingInLatteLover · 11/10/2014 18:08

Yes - it's awful isn't it :(

I hope you feel better soon
x

Original poster
aurorasky · 11/10/2014 18:12

always I totally understand the stroke suspicion. My arms are really stiff and I was a bit hmmmmm? Thank God for Mumsnet, I feel so isolated just lying in a blacked out room feeling like I've been punched in the head. My Husband is all laughing and joking, obviously has no idea how terrifying this is :(

Didn't know other pills were an option. I shall get on to the GP's on Monday. They are brilliant here (Devon) and deliver prescriptions to your door if you can't get out!

OP posts:
feetlikeahobbit · 11/10/2014 18:14

Betahistine helped me, but you need to rest and eventually it'll pass. My last attack was 2 weeks long. Off work, no driving going slowly insane, you have my sympathies OP Flowers

AlpacaYourThings · 11/10/2014 18:19

Yes, I have had this. I also thought I was having a stroke, was the most horrific moment waking up and feeling paralysed.

I felt better after about 4/5 days, but I didn't feel 'right' again for about 6 months, which my GP said was the normal recovery time.

Thanks hope you are feeling better soon.

bluegardens · 11/10/2014 18:19

I think it varies. Had it once for a few days, and another attack that took 10 days to fully clear. Motion sickness tablets helped a bit. But it was still awful. I lost weight as I was too nauseated and confused (which way is up?) to eat. Hope you are at least keeping fluids down?

Original poster
aurorasky · 11/10/2014 18:30

6 MONTHS Alpaca Shock!! Vertigoheel tablets sound interesting theone

Thanks for all your messages, Im managing fluids fine luckily. Going to have to sleep again now...

OP posts:
TheOneWiththeNicestSmile · 11/10/2014 18:38

They're def worth a try if you can find them, aurora - try amazon? (I'll have a look for you)

They're herbal, but I'm not susceptible to weirdness and they definitely did help me (although I didn't know about them in time to check them out when I had my really bad go)

AlpacaYourThings · 11/10/2014 18:40

Yes, sorry OP I probably shouldn't have told you that Blush But you may get better quicker, fingers crossed. Smile

TheOneWiththeNicestSmile · 11/10/2014 18:47

\link{http://www.vivomed.com/Mobile/MobileModels.aspx?ModelID=8099\this is the best price I've found} & shipping is reasonable

It's a neat little bottle so if it did work for you carrying it all the time (I do! But haven't needed it for a long time) isn't a problem Smile

standingonlego · 11/10/2014 18:54

DH and SIL both had this, it is truly awful. Doctor did some special head movement things to help shift the crytals which really helped them both.

Looking it up - it is the Epley maneuver.

www.nhs.uk/Conditions/Vertigo/Pages/Treatment.aspx

m.youtube.com/watch?v=ZqokxZRbJfw

standingonlego · 11/10/2014 18:55

Do not try it at home!!! But might we worth asking, I think it is for a particular "type" but it did the trick.

DustBunnyFarmer · 11/10/2014 19:14

I've had this a couple of times and it is grim. The most recent bout was 2 1/2 years ago. My GP warned me at the time that subsequent bouts of viral illness can set off another bout of labyrinthtitis and - depressingly - she was right, but at least the follow-up bouts are less severe.

The main thing is to rest up and not try to fight it. I find betahistine helps and that when my symptoms are milder, it is actually OK to be upright and getting on with life gently so long as I don't move my head around too much. For some reason trying to swim backstroke on holiday (yeah, great timing) was a complete no-no but breast stroke or gentle crawl was fine.

The repeat bouts have got less & less severe over time - the last year when it's happened it's been more a couple of days of feeling a bit dizzy and seasick (dealt with by betahistine) & then WHAM a cold or sore throat kicks in.

DustBunnyFarmer · 11/10/2014 19:16

Oh yes, DH and I have done the Epley manoeuvre at home (using youtube guides) for subsequent, less violent bouts and it has helped, but I think it would be unwise to try it if you are in the throes of a severe attack. It's bad enough when you are only mildly spinny. Best to ask your GP about it if your symptoms don't settle quickly.

andrea315 · 11/10/2014 19:20

Yes I have had it it's awfull came on at work and i had to be picked up and send someone back for my car it was about 11 years ago and I can't forget it Sad

Original poster
aurorasky · 11/10/2014 19:58

Yes, the GP is going to do the Epley manoeuver thingy next week if I haven't had relief using the tablets (I'm on Cinnarizine). I am not any better at all and am imagining all sorts, OK brain tumour to be honest. I have constant tinnitus (mild) and now a headache too.

Having never heard a first hand account of labyrinthitis I guess I didn't think something so 'benign' could make me feel so unwell and completely and utterly incapacitated. Reading your comments has actually reassured me that yes, it can be this severe, although I'm horrified that so many of you have to suffer repeat attacks :(

OP posts:
DustBunnyFarmer · 11/10/2014 20:03

Nope, it is properly vile and incapacitating. I also had more headaches and was very, very tired with it - your brain is having to work double-time to try and make sense of all the wibbly-wobbly information your inner ear is sending it. I have a friend who had to crawl to the bathroom to go to the toilet when she had it - she couldn't actually stand up.

nethunsreject · 11/10/2014 20:07

I had it years ago, it lasted a couple of weeks then I was a bit off colour for a few more. I was completely 100% within the month. Never ever had it since thank goodness!
Get well soon.

EddieVeddersfoxymop · 11/10/2014 20:14

I had it two years ago, it was utterly horrific and recovery for me was about a year. I was able to function while recovering, but constantly felt odd and like I was walking on marshmallows. I had a bout a few months ago which lasted a couple of weeks, and I still feel odd now occasionally.

Sympathies OP, it's awful.

imip · 11/10/2014 20:21

Interesting, I think I have had this but it was called BPP? I'm sure I had the epley manoeuvre eventually as the vertigo never went. It is still the a bit and I had the first episode 4 years ago when I was 32 weeks pregnant. Having already experienced a stillbirth I was petrified. But no one every called it labryinthitis, however, it was the crystals in the ear thing, is that the same thing?

I've had 3 or 4 episodes since then, I've vomited a couple of times. I ended up with tinnius for about a year, now I experience mild vertigo, NAND really manage moving my head all that quickly, but I can still do it. I can feel one ear is always a little blocked, but I can function, and function well.

Original poster
aurorasky · 11/10/2014 20:29

DustBunny the exhaustion really is something else, nethunsreject glad you have had years with no attacks, good to know :).

Have watched the video standing , looking at it reminds me of those spinny machines fighter pilots are are put in to get them accustomed to high G Forces. That out of control about to black out feeling. The Doctor said she couldn't do it the other day as my toddler was there and it was too 'dangerous'. Yikes.

OP posts: