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.

Look up vestibular neuritis honey x

I haven't had a proper attack (touch wood) since I retired from teaching - less stressed and less contact with all the viruses buzzing round a class of 5 year olds. Here's hoping. I also feel anxious about it striking again. Apart from the first time I usually wake up with it and I know as soon as I open my eyes whether I've got it or not. I particularly dread getting it when I've got something important to do or I'm going on holiday or something.

I’m wracking my brain to think of other things that have helped! I second ShesAnEasyLlama about the diagnosis, my relative was diagnosed with vertigo time after time until she mentioned hearing disturbances, then they said it was most likely Meniere’s.

She drinks herbal tea now, but be careful because some of them do still contain caffine (green tea) so she tends to stick to fruit teas and hot water with lemon. Salt was a tricky one but even down to not having vegetables in restaurants brushed with butter, she’s very particular about added salt. She tends to have attacks when she’s been very cold, if she’s been around flashing lights - the tv can be a trigger so she limits this. They happen if she’s been uncomfortably hot or out in the wind, she also seems to suffer if she’s stressed or had to use transport a lot. Driving in the dark can be a trigger as the head lights can have the same effect as strobe lighting. Meniere’s tends to have a timescale of about 7 years so it usually goes away.

I hope you find something that works OP, do you take medication? My relative takes medication but I think it’s anti dizziness/sickness rather than a Meniere’s specific medication.

Check out the other “Labyrinthitis and Friends” thread too. I’m going through my first bout. It’s awful. Sending you my thoughts

Travel sickness pills really helped me when I had it about ten years ago. Hope you recover soon, it’s a horrible illness!

I've had this, still get bouts, and my doctor said the Epley manoeuvre would probably not work in my case, but added that it was very unwise to try doing the manoeuvre without proper medical supervision.

@LotsToThinkOf I'm currently taking Stemetil and have tried Stugeron also!
Honestly - strobe lights/TV etc has been affecting this too and I didn't realise it would. It's all making so much sense now. I think I do need to phone the GP again

Does anyone else feel like they get palpitations during an attack?

I think the palpitations are caused by the anxiety/panic attacks as it is so scary.

@helpmepleasee I had so many other symptoms, chest fluttering, numbness in my hands and legs, fatigue- I’d pretty much diagnosed myself with ms but I think a lot of it has ‘just’ been anxiety. When I have a severe attack it’s just as bad as it’s always been (lasts about 20 minutes, but I can’t see or move and feel sick) but the background stuff has been generally improving and the other symptoms have reduced with it.

I've had this, still get bouts, and my doctor said the Epley manoeuvre would probably not work in my case, but added that it was very unwise to try doing the manoeuvre without proper medical supervision.

Yes it would be best to get the specialist to do it, but my thinking was I couldn't possible get any more dizzy/sick so I did it and it worked for me. But if you are in anyway unsure about it, it is best to get the doctors to do it if appropriate for you.

You've all made me cry with relief if I am honest. I'm so relieved that there WILL be an end to this and honestly with the palpitations etc (and quite a few of the other symptoms mentioned) I honestly have been so worried that something majorly serious is wrong.

Thank you all so so so much. My anxiety has been relieved with this thread already

I had this last year. I had the stemetil injection in hospital and was then given the stemetil tablets to take home. They made me feel awful, so foggy and I'd couldn't think (they're an anti-psychotic medication). I also tried the ones you dissolve under your lip (buccastem I think) and they made me feel sick.

When I went back to my GP about how awful the stemetil was making me feel she was horrified the hospital had given them to me and rang to complain. She said that the ear specialists (I forget the name) are recommending no medication for labyrinthitis now.

She said that labyrinthitis causes (or is caused by) damage to the areas of your ear/brain that control balance. She said that being on medication is a fake fix. You feel better temporarily but become reliant on the medication to be able to balance properly. She said the best thing to do is to recover without any medication, moving about as much as possible in little intervals throughout the day and building it up from there. Took me 6 weeks to leave the house on my own but I'm pretty much better now, can't tilt my head too far back without getting dizzy though.

My mom had it about 15 years ago and still gets really bad days. It can lead to permanent damage. If you ask your GP they can refer you to an ear, nose and throat clinic and they can try different treatments to 'reset' the balance in your ear.

I take over the counter sea sickness tablets when I get it, they work wonderfully. I'm shocked that anybody would call an ambulance for it, it's hardly life threatening.

@brizzledrizzle I'm not shocked in the slightest. If you've never had it before and an attack comes on you suddenly, it feels like some sort of strange heart attack or major issue.

There are lots of different causes of the symptoms, so you need to push for a referral to an Ear Nose and Throat specialist. I was helped by physiotherapy. Tablets were no use at all.

The term labyrinthitis is more a description of symptoms than a condition, as I understand it, there are multiple causes.

I am not in the least surprised that someone would think it was a medical emergency, it scared the fucking shit out of me first time around. And it is a seriously debilitating condition, it put me out of work for the best part of a year. It is quite dreadful, and very hard to explain to those who haven't experienced it.

I woke up in the middle of the night with it, yes it was scary. I can understand calling an ambulance the first time but the pp who mentioned it said it was something her husband knew and recognised.

Have you tried the epley manoeuvre my dr suggested I come back and he would perform once I’d gotten over a bout. I googled it so simple I thought what a load of rubbish . Tried it anyway did more than once as instructed and it had a difference not immediately but kind of few hours later or next day symptom free and then didn’t have another bout for nearly a year. Got another mild bout repeated and gone !!! Try it x

I was hospitalised with labrynthitis as it triggered severe palpitations and low BP - I was a medical mystery until a nursing sister who had had it recognised my symptoms and got me the appropriate meds (I loved her for that)

Definitely go back to the GP - it’s a really serious issue and debilitating so if they were dismissive see someone else

I had it after a virus with tinnitus and slight deafness. Drugs just ease symptoms but I found argent nit homeopathic remedy stopped it completely after several treatments. Definately don't give up, further investigation diagnosis and treatment may help a lot. If your gp won't do the suggested manoeuvre try osteopath.

stemitil is given to stop nausea

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.

So similar to me. I had it first in June. I was out for three months. Then came back November and I still can tell I'm not normal. My eyes flicker so fast I've filmed it on my phone. Apparently it can be to do with your eyes trying to balance (I googled). Labrynthitus in my case and controlling my eyes is a daily pain in the arse.

I live alone and already have a chronic illness and am basically bed ridden but would try to go for short walks and enjoy tele. Labrynthitus has made me more scared than anything. I was sat not being able to use my phone or watch tele for weeks... basically going shit stir crazy staring at the walls crying. I was so exhausted I could barely put the bins out.

The second time definitely came because of sleep deprivation.

It's actually made me so low. I do think if you get lots of sleep that's key op. I do think you can recover but it takes time for your brain to readjust.

I've not been helped by doctors but am going again to ask for ent specialist.

Op I think my case in extreme as have immunity problems. It will get better.

The crystals in your ear thing is a completely different kind of dizziness.
Labyrinthitis is far worse and like acute motion sickness. I've had two bouts of it the last few years and was lucky that it only lasted a day or two each time.
Make an appointment to see your GP asap and ask for tests.

I've been getting it on and off for about 15 years now with a few really severe attacks and lots of more minor ones. The ENT specialist said its a form of migraine for me (I'm not sure I believe him) I think the first attack was sparked by a virus but now I sometimes wake up with it. It lasts anything from hours to week. On the specialists advice I have tried lying down and turning slowly towards the dizzy side. This is hard to do but can sometimes help.

My first and only attack came on really suddenly. I'm a person who doesn't see a GP for years on end. When this happened I was alone in the house, I sort of fell over then couldn't get up again. I crawled to my bedroom but couldn't get my head high enough to get on the bed where my phone was. I vomitted and the feeling was like nothing I've ever experienced. I called 999 who came immediately and I had to crawl to open the front door. As the ambulance arrived I started to feel not quite as bad but they took me to A&E as thought I may have had a stroke. Once in hospital they found I had a nasty ear infection ( hadn't had a single symptom or cold or anything) I was discharged on antibiotics and drops but the symptoms kept reoccurring for about 3 months. I was eventually diagnosed with labrynthitis and prescribed stemetil. Once it went away its never come back and it's been five years now. Oh and during the time only rest helped with no sudden movement. I don't know how anyone could actually go to work with it, I could hardly walk through a door without banging into it. I also didn't drive as didnt feel safe on the road