vertigo- I want my life back

[Cherubneddy1]

I'm scared I'm never going to get rid of this awful vertigo and get my life back again.....

Nearly a month ago I had a severe inner ear infection and extreme vertigo ( couldn't open my eyes without vomiting). I was admitted to hospital but the infection wasn't treated properly and it spread to cause mastoiditis and bacterial meningitis.

I responded well to treatment for the meningitis but the infection destroyed my hearing and also balance mechanism on my right hand side. I e been told the hearing won't come back, but that my balance hopefully will, as the other side should start to compensate.

It's been nearly a month now and I still have vertigo. Not as bad as it was, but still exhausting and disabling. I'm worried I won't ever get rid of it and won't be able to drive or work again. I have a 3 and a 4 yr old and I want to get back to being a proper mummy again. My amazing DH is having to do nearly everything at the moment.

I just want to get on with life again. Has anyone had any experience of this?

I feel for you, I had this for 27 weeks and honestly wanted to die.

Did loads of research on it which I'm sure you have too. Consensus was the worst thing you can do is lie down and be still. Your body needs to literally find it's equilibrium again and can only do this by moving around.

Do you still have the nausea? Again a number of people recommend Scopoderm patches (hyosine) as a good prevention to this, a lot of divers use them.

There are also exercises you can do but generally you need to be taught them.

Hope you get well soon!

How awful for you. Not experienced the same but I did have a bout of labyrinthitis after flu and it was dreadful, and nowhere near as severe as what you're dealing with.

The worst thing I found was the feeling of isolation. Even more so if your hearing loss is permanent. Are you not being provided with any support to help you adjust to your new condition?

I would let your DH know how you're feeling if you haven't already. Yes, it's a lot for him to manage but you would do the same if the situation were reversed, wouldn't you? The important thing is to get yourself well. Are you managing to rest?

I feel for you, it can be the most disabling thing but an invisible illness.

I have suffered with vertigo for years but I manage it. I try not to do things that I know will set it off like lie flat or on my left side. If I feel an attack coming on I take two anti sickness tablets and two ibuprofen and it sorts me out.

I've been bed bound with it, it's truly hideous op,

There is the epley manoeuvre you can try but I've never been brave enough. You've prob googled it and read all about that.

I've found most gp's to be pretty useless or clueless with this condition to be honest.

Has anyone been referred to ENT about vertigo?

I had a horrible attack of it about 5 weeks ago and literally lost a week of my life. Went to the GP who was very sympathetic and referred me to ENT. I'm intrigued as to what they are going to do.

Stress and lack of sleep cause mine

My understanding is that 'vertigo' is a symptom that can be caused by many things, in my case originally labyrinthitis but then once the infection had spread to my brain, a permanent loss of my balance on one side. So I'm under ENT, have a follow up appt next week. That and the hearing loss is making me feel really disorientated and isolated. . I'm awaiting an audiology appt to have hearing aids fitted.

I'm so scared I will have to live forever like this, I have been warned it can happen sometimes, where the other side isn't able to compensate. But that that is normally in older patients (I'm 45.)

Yes, I was told I should move around as much as possible to help re balance, so I'm trying to, but I'm also pretty wiped out after the meningitis and month in hospital, so it's getting the right balance I'm struggling with.

The constant ringing in my ear is driving me mad. I feel so low and tearful. Thanks for all your responses, they do help.

Oh good, well I'm glad that at least you haven't been flung out following what sounds like poor management in hospital to figure this all out on your own.

I had a serious illness 5 years ago and it drove me mad people telling me 'each day just try to do a little bit more' when I felt like I couldn't do anything and nothing was improving, that I couldn't do that little bit more to build up my strength. It took months but slowly my body did recover, it's still not 100% there but then again I'm 44 so I have to be realistic about whether I will ever become an Olympic athlete now

Keep talking here - at least this is a way of communicating that doesn't put you at a disadvantage and will help you feel less isolated. Is your GP able to support you in the feelings of anxiety, which are entirely understandable under the circs? I wonder if Action on Hearing Loss would be able to help as well, putting you in touch with other people who have been through what you have.

Are you able to get outside for a little bit to get some sunshine (when there is any)? I appreciate you may not want to walk far because of the risk of a vertigo attack - could you use a stick for stability?

Oh god you have my sympathy, I had vertigo about ten years ago and it was horrible. For me it was also the result of an inner ear infection. It's so debilitating, I literally had to lie in a dark room with my eyes closed for most of the time, couldn't even have tv on or read a book, let alone get up. I was so sick as well, it's dreadful. For me it lasted about six weeks and very gradually got better until I was back to normal but it took a while for that. Even now I get dizzy spells a lot and am sure it's related.

Big hugs.

I had acute labyrinthitis about seven years ago - what helped me was a prescription for Prochlorperazine and a walking stick. I'm about 90% recovered now - I can cope with the poor balance (people just think I'm clumsy) but the tinnitus drives me bonkers. Next step is trying Accupuncture which I'm hoping will improve my symptoms further.

I do sympathise. Before the drugs, I just wanted to sleep forever. It's a total nightmare.

You poor thing. I'm currently still recovering, in my fifth month of extreme dizziness. The first few months I couldn't do anything. I felt so isolated. Total loss of independence. I'm only just starting to walk on my own and I'm still so unsteady I look drunk. The ENT lady has been wonderful though and doing the exercises she gave me has helped me improve. I'm still lonely and isolated but I can see things are getting better. I really hope that they do for you too.

It is really scary but it will just take time I'm sure. I had a violent vertigo attack 13 weeks ago, I couldn't open my eyes for a couple of days due to the spinning. It was some time before I could get out of bed. It's a slow recovery for me, with some days better than others .I've had vestibular problems for years but nothing like this. I lost the hearing in my ear but some has come back .The tinnitus is still there. PM me if you'd like to talk more. I see a fantastic consultant and physio.

Ask about if/when you can be referred for vestibular rehabilitation - I had very bad labyrinthitis and got to the stage after 9 months where I could barely walk in a straight line unless my head was stock still, I couldn't drive and it was horrendous. VRT was amazing and worked really well, within a couple of months I had my life back and was driving, walking around fine.

Oh hun. Both my dad and I suffered from it. His was a lit worse than mine

Yes it will get better!

And when it does, try to use oil regularly for your ears (make sure clean) and one of those natural salt water nose sprays to prevent infections and wax as if you have narrow ear canals like ours it might come back.

You will get there hun. So sorry, I feel your pain