To ask you about labyrinthitis?

[helpmepleasee]

Hi! I'm so sorry this is not really an AIBU.

I have been having periods of labyrinthitis for a long time now - around a year, a few weeks at a time.

I've just got rid of it and it has returned. I've taken all the tablets the GP has given me to no avail. Can anyone give me any tips at all?

Also, how long does this usually last? It's absolutely horrific and I haven't been able to leave my bed for weeks now.

I haven’t got an answer just sympathy. I last had it about 5 years ago it's awful, probably the worst I've ever felt. I'm always scared of it coming back because it's totally incapacitating.

@glamorousgrandmother not going to lie, I genuinely thought something was seriously wrong and when I'm having a really bad moment I still do. It's terrible isn't it?! The scariest thing.

The first time I had it in was sent to hospital and they tested me for everything until it turned out to be my ears. I ended up on a drip that time because I couldn't even keep a sip of water down. I've had it a few times since then. Sometimes it lasted over a fortnight, once it only lasted half a day.

Weeks? Lord, you have my sympathy.

Dh gets labyrinthitis. He calls an ambulance and they give him an anti-sickness injection and tablets, and he’s generally fine in a couple of days. If it lasts weeks, it must be horrific.

There’s another OP on here tonight with this . Try YouTube and look at the Epley manoeuvre and Brandt Daroff exercises ... I do them when I get vertigo. Tablets do not work for me but the exercises help 😊

It stays. I had it years ago and couldn't take the tablets. They seemed to make it worse. Now, every time I have a cold or if I go out in high winds it makes me whizzy. It is liveable, and there are things you can do to help yourself, like horizon gazing, suck a mint, warm flannel on your forehead. Weird, but they work.

Thank you all so much, I'm hoping that I end up as lucky as PP and this time it only lasts for half a day!
I feel useless. Whenever I try to do anything I just physically cannot do it.

I'm about to try YouTube for the Epley manoeuvre, but first I'll grab a mint and a warm flannel. Thank you for those suggestions, at this point I am so desperate it is unreal.

If it's just feeling a bit whizzy those things help but sometimes it feels like the bed is spinning round and I have to hold on in case I fall.off. Then I can't stand up at all or keep anything down. This stage lasts a couple of days after that it just feels like sea sickness and lack of balance for however long it takes. I've only ever been given tablets to stop the vomiting.

Are you sure at this point it's still labyrinthitis? After I had it repeatedly I was diagnosed with Meniere's instead.

I would second trying Epley or self referring to a specialist vestibular physio who can do a simple test to see if you have BPV and the Epley manoeuvre is appropriate and then treat you.

A relative of mine suffers with Meniere’s and her dizziness symptoms have reduced since cutting out salt and caffine. Obviously she hasn’t managed to cut it all out (hidden ingredients etc) but she avoids all obvious sources. She still has attacks but they’re lot less intense.

I’m so sorry you’re suffering from this, it really is a horrible illness.

@ShesAnEasyLlama I don't really know to be honest. I have found information about Menieres online whilst googling Labyrinthitis and it did concern me - the GP doesn't seem concerned and just tells me it can take time.
I honestly feel like I've put up with it and given it enough time and that perhaps he should try and help - the issue is I can't really get an appointment until a day when I feel well enough to get there. It's a tricky one!

@LotsToThinkOf CAFFEINE actually - I do drink a lot of caffeine. Coffee and tea, both with sugar.

Maybe this is something to think about. Tomorrow I will try cutting it out and see if it makes the day any more bearable. Thank you!

I've always just been told it's a virus and there's nothing that can be done. As I said, it's five years since I had anything more than feeling a bit dizzy so I'm hoping it doesn't come back.

I had labyrinthitis last year & it was awful. I was genuinely scared when it started, doctor called out, injection etc. I couldn't open my eyes without vomitting for nearly a week.

I was given anti sickness tablets that you put on your gum & it disolves. That worked better than ones to swallow as I couldn't keep anything down.

I had it badly for 3 weeks & couldn't drive for 5 weeks. Even when I felt safe to drive I was still exhausted. I would literally take the kids to school & come home & sleep/dose/rest for the rest of the day.

I get a bit anxious if I get a cold as it's more likely to come back then.

I was told to rest & stay as still as possible as that's the only way your ears recover.

I would say it was around 3 months after I got it that I actually felt like my old self.

NHS website tells you it's a virus, but it's actually damage left over from something else, which could be a virus but could also be something else. It's nerve damage. Hence repeats of it when you're run down.

Don't know if you have tried the Epley Maneuver? It took and few tries and after the 4th go, it worked. I still can't move my head in certain ways but the dizziness is gone. It is better if you can get someone to watch this and do it or you, but you can do it yourself. Please be aware that it might make you vomit and more dizzy, but my thinking was I can't feel any worse than I do now and when it works it is such a relief. Maybe speak to your GP about it, they should refer you to a specialist.

I have had this and it is awful. Hope this works for you.

I think the problem is that there are tiny crystal in your inner ear and they are not in their correct position and the Epley Maneuver puts them back in the right place.

@JurassicGirl - it sounds like you had a horrible horrible time of it. Thank you for sharing this with me, it really gives me hope that hopefully soon I can actually feel like myself again.
I know exactly what you mean re exhaustion, for the one day I thought I felt better, I went to make a cup of tea and was in bed for the rest of the day! More than anything I'm so frustrated.

@BobbinThreadbare123 that would make sense. I have actually been without heating for a little while - could this be making it worse at all? Sorry to bombard I'm just so desperate to feel half human and to be honest I'm so relieved people are speaking to me, it's seriously helping me feel a bit less isolated with this.

@longtimelurkerhelen thank you for that, I will try that definitely. Anything that even has the slightest chance of helping I will try!

I am glad it worked for you. I'm going to have to try and do it myself so may wait until I feel like I can move. I've been in this position for a few hours now and i think I will actually manage to sleep for the first time in a while.

Mine was caused by repetitive movement (lots of sit ups), but can also be caused by a virus.

I had my first symptoms in July, then returned in October and is still hanging around. When I get a severe attack, my eyes move around involuntarily, like I’m demonically possessed. In between times I have varying degrees on dizziness and vertigo and times where I feel pretty normal. No hearing loss, but sometimes ‘heaviness’ in my head/ear. No definite diagnosis yet but clear MRI brain scan (£400 on credit card for that though). It just makes everything harder and I get physically and mentally tired with it. And anxious about getting a severe attack in a dangerous situation (not currently driving).
So, yeah, much sympathy, not much help. Stemetil does help me with the constant background dizziness. Looking to the horizon and shaking my head slowly sometimes helps a bit. Avoiding nodding my head and avoiding long conversations with people who gesticulate a lot too!
It’s really debilitating. I’m so grateful my brain is ok and there are much worse things but at the moment it’s affecting most aspects of my life. So,

@PeaceRiot honestly in a completely selfish way, you've just made me feel a lot better. I was struggling to put into words WHY it is so bad. My life is also being majorly affected by this, and I know 100% what you mean about the anxiety of getting a bad attack.

It's absolutely terrifying and in all honesty it's just too much, I'm so so sick of it.

@PeaceRiot I forgot for you too, it sounds like you're also having a terrible time

I think the exhaustion is caused by being so tense all the time as you are so aware that you might fall over. I couldn't even stand up, just crawled about the house. Really hope it works for you.

With your GP, try and get a telephone appointment (most Doctors offer this now) and ask them to refer you to a specialist if the epley doesn't work for you.
Best wishes