Labyrinthtis

JR4

Hi let me first start by saying I do not need medical advice I am just trying to get people's experiences in this condition.

My daughter is 13 ( nearly 14 ) and a few weeks ago was diagnosed with this condition she has seen the doctor and also a consultant at the hospital ( going back next Tuesday ).


What I would like to know is has anyone else had any experience with this condition she is constantly dizzy and has a headache all day she can't cope with noise or busy places ( has not been to school since the 7th may ) and is always tired she finds getting to sleep difficult and has to sleep with the light on as if it is dark the room feels like it is moving.


I would like to know of anyone has had this or knows anyone who has any tips on how to make it more bearable for her as this could last for weeks or months and it is really getting her down.


Once again I don't need medical advice as we are seeing the consultant next week just some coping tactics for her would be gratfully received.

balletshoes

I had it once, several years ago.
My doc gave me anti-nausea medication.
Its an awful sensation, having this, my sympathies are with your daughter. I struggled to sleep, struggled to keep my balance etc, but mine only lasted for about 10 days.

Person_one

I had it a few years ago, its deeply unpleasant and there isn't really a great deal you can do.

I coped by staying very very still most of the time, looking straight ahead and listening to audiobooks and radio programmes. Reading is impossible, watching TV or films can kick off a dizzy spell and moving around is just not a good idea! I really feel for her at 13, it was hard enough to cope with as an adult.

She should have been prescribed some medication to take the edge of the nausea, but apart from that you really just have to wait it out. It lasted 3 weeks for me, but a friend who had it recently was well enough to go back to work after a week, so it varies a lot. Be prepared for the fact that it can actually last months or even years though, fingers crossed it won't for her.

Tell her not to worry about sleep, if she ends up being awake at all hours it doesn't really matter, her body will let her know when she's tired enough that sleep will override the dizziness whether that's at 10pm or 11am or in short bursts through the day. Sleep pattern can be sorted out when she's feeling better.

Good luck.

kittendothroar

I had it for about two weeks several years back, was awful, nothing apart from rest allieved it sorry! Had antibiotics in the end.

Hope it clears soon x

lizziebabe

I have this from time to time and it is horrible. So, I empathise with your daughter. There is a procedure that my GP does that helps. I also have BPPV. I can get it simply by turning my head in bed :eek:.
The GP can prescribe medication such as Prochlorperazine which helps the nausea. If there is vomiting there are tablets which you can put in the lining of the mouth where they dissolve.

I am a Nurse and I know you haven't asked for medical opinion but there is a lot of info on the net, and speak to the GP. One thing that does help is hard but can work. If you fix your eyes on a fixed spot even if you feel horrible and everything is spinning, soon the brain will receive the message that the head is fixed and the spinning does stop.

I hope she feels better soon.

angeltreats

My dad used to suffer. His attacks didn't last too long, two or three days usually, but were very frequent. They made him terribly sick and he couldn't walk very far as his balance would just completely go and he would trip over and we worried about him hurting himself.

The doctors tried him on various drugs for the nausea until they found something that worked, but for the awful vertigo-like symptoms the only thing he could really do was go to bed and wait it out.

A silly thing really but my mum used to put a kitchen chair halfway between their bedroom and the bathroom so if he needed to go the loo he could have a rest halfway, and that made it a bit less daunting for him because when you can't walk any distance without your head spinning, your eyesight going and knowing that you will probably need to be sick any second, even a few metres seems like miles. Also he was sometimes able to keep lucozade down better than water which helped stop him becoming dehydrated.

Much sympathy to your daughter, it's a really horrible condition that not a lot of people seem to understand. Thankfully my dad hasn't had an attack for a few years now *touch wood*.

candjsmum

Yes I had an extremely bad episode of this in 2001 and several smaller attacks since which the doc has now diagnosed as Menieres. The first major attack had me bed bound for about a week, crawling to the loo on hands and knees as it was impossible to stand. Over the years I have found out which things trigger it, tilting my head to read book titles in libraries, going up and down in lifts, blowing up balloons so I don't do them. Also can't sit with my left ear facing any kind of music. Hopefully your daughters will be a one off but if not it is manageable.

Savvy_Sue

Another one who agrees that it is a horrid thing to have.

This website may help, there's a sort of forum if you click on the Guest Book link.

Here's hoping she has the kind which can be fixed by postural manoeuvres or exercises.

Molly41

I get a lot of support on https://www.dizzytimes.com which links from that labyrintitis website.

JR4

Thank you all for your replies the doctor won't give her any medication because of her age and possible side effects (?) I have some travel sickness bands that I might try but I do think it is just a case of making things as easy as possible for her.

Thank you all again for your replies and fingers crossed that it passes soon.

Savvy_Sue

Well, good thing is that she hasn't got too long a wait to see the consultant.

One other thing I found useful was a referral to the 'dizzy physio' - a physiotherapist who had a particular interest in falls and dizziness. Apart from being a very dishy young man (try saying dishy dizzy physio several times!) he was extremely helpful. Indeed, for a while I had one of his comments in my signature - "You don't LOOK as if you're going to fall over." Very encouraging when you feel as if you look drunk the whole time.

If the consultant isn't able to 'fix it' then ask about a referral. You may need to go back to the GP for that.