After 2 years of men and sep I am still off balance, which I understand to be because of brain damage and then it affected my inner ear.

[pamelafrance]

I will not recover is anyone else like me.

[daffodil]

Hi Pamela,

So sorry to hear you are still having balance problems. I have written a blog/post called vestibular dysfunction after meningitis which may be off interest to you. It is a very common after effect of Meningitis.Type in dizziness at search bar above.

I am celebrating my 6yr anniversary from Bacterial Meningitis and Septicaemia and dizziness/balance problems still affect me. 24/7.Unfortunately even vestibular rehab did not help,so I was discharged and told that I will be on crutches and wheelchair for good now.It is the most disabling after effect which they say is caused by inner ear damage and damage to the cerebellum.

What treatment and tests have you had?I was given MRI,and vestibular testing to see what was causing it and then given vestibular rehab -this can be very successful and I know lots of people who are cured of dizziness.

Are you able to stand up and walk or in wheelchair? I would say that if you can walk a bit then there is every chance rehab will help you.One of the posters on here,went from using a walker,to crutches,to stick.Have you had physio and OT help?

There is also a very good website called brainandspine.org.uk which deals with all sorts of conditions.I did a blog a number of years back on dizziness and balance problems -under Gillian's Story.I found this to to very useful source of info for dizziness,memory loss which are 2 of my worst after effects.

[pamelafrance in reply to daffodil]

I use crutches inside and wheelchair which my friend and my husband take me out in. I have physio which makes me stronger and do exercises and hydro. I have speech and language as im profoundly deaf even though I have got 2 cochlear implants as well as tinnitus which drives me mad.

I take pain killers and wear pain patches as my arms, legs and hands are painful. I also have acupuncture for one arm which is not any better yet but I keep hoping.

[daffodil in reply to pamelafrance]

Can I ask how you got referred for hydrotherapy?I have wondered if this would be helpful as,like you I am very weak.I also have Me/fibromyalgia and have a lot of pain with this,as well as endometriosis so have a lot to cope with.

I am so so grateful that my hearing was not affected by the Meningitis.With the implants what do you hear-can you hear speech?There are lots here who suffer tinnitus,so will be able to identify with you.Vasco is another forum member who have cochlear implants,so you may want to contact him.We are a reallt friendly bunch and all try to support each other.

[paul1224 in reply to daffodil]

the pool i went to would only give u 12 weeks so if u want or need more u have to be sent byeyour consultant again but do ask it is good

i started with with 3 physios to stop me from falling over L was sent sent through my consultant but u go for it and push

paul

[pamelafrance in reply to paul1224]

I have had hydro once last week and then again once this week. Dont have my letter for March yet so dont know what I will be doing then. But I will push for it if im given the chance. Thank you for that Paul. Do you have help in the water now? Im hoisted in and out and have 1-1 support in water and a physio shouting from pool side to tell me what to do. Good job I can lipread lol.

Pamela.

[pamelafrance in reply to daffodil]

I was referred to hydro by Brain Injuries Team who are supporting me till April..Dont know what happens after that as they say my rehab will be finished then. will let you know, The heat in hydro is good it helps you relax but I have to have support in the pool as I cannot tell if my feet are on the ground and I cannot balance. I can hear noises but cannot always identify what they are. Speech is difficult and I rely mostly on lip reading..

[daffodil in reply to pamelafrance]

It is really good that you seem to have had a lot of support afterwards,I had none and if I hadn't had a very supportive Gp wouldn't have even had vestibular testing and rehab.I would like to try hydrotherapy - I will ask Gp about this.

Itmust be so awful to loose hearing -for my hearing I feel very blessed indeed,especially since my balance is damaged.Please keep in touch.

[paul1224]

hi

i am so sorry to say i have the same problems after the same illness

i am noe in to my 10 year and i still have no balance when i first add it the doctors told me they did not think i would even walk again but

having 2 young well teens sons pushing me around just drove me mad

so i worked at walking even a few steps with a zimmer frame

then moved on to crutches i cant walk very far usually from about my front door to the car on the drive i still fall haveing add 3 broken ribs to show for it but i don't give up

so please just keep working at what u cant do and dont worry about what u can what u cant is what will take the time and a lot of effort to get over

all the best with it and the very best off luck and don't rush it

[pamelafrance in reply to paul1224]

Hi Paul, I have had 2 falls but didnt break anything. I can walk short distances on crutches outside but most of the time my husband and family use my powered wheelchair. Ive recently started hydrotherapy and im hoping this improves my strength as im weaker after the m and s. I like it when you say dont rush it - if only - best wishes.

[paul1224 in reply to pamelafrance]

thank you hydro is good i had it first when i was in hospital need 3 physio to keep me up right then when i came out of hospital it stopped

got my consultnt to set it up again but u cant do a lot 30 mins a week lol

thy only let u do 12 weeks then it stops again so many want to use it u cn understand why

all thr best tell me how it does for u i be happy to see how u get one

all the best keep in touch

paul

[pamelafrance in reply to paul1224]

When I go to hydro Pau the hardest part is getting undressed and dressed with being off balance. I know how toddlers feel now when they first start to work towards independence. Best wishes.

Pamela.

[daffodil in reply to paul1224]

AH Paul-you are the man I was thinking of having worked so hard to get to using crutches!3 broken ribs ouch -I had one broken rib from coughing and it was absolute agony for 12 weeks.You sound a very positive and determined guy.

[paul1224 in reply to daffodil]

i say to my self never give up

also a fun tip for every one who is on crutches

starting with exmass as any decorated your crutchs uo for you

get some tinsel and wrap around your crutches then had battery lights £1 in the pound shop i have 2 sets on each crutch works great and the amount of people who take a intrest in u wonderful

valentines day red tinsul same lights

easter yellow tisel again add the lights we had little chicks and small easter eggs

great fun

try it

[pamelafrance in reply to paul1224]

Im so glad ur on here Paul youve cheered my up no end.

Pamela.

[paul1224]

is there not staff on hand to help you at my pool there is and also to save the problem off the steps they use a hoist to put me in the pool and get me out again

The physios are always in the pool to receive me and get me of the stool

and one always stays with me i wish some times i could have ago my self but i know thats not safe

The trouble with being with the physios is that they work u so hard , i am always glad to get ot in the end for a rest lol

keepsmiling

[paul1224]

come on come all

lets see the chicks and eggs on every body's sticks with lights for easter

let people ask why and tell them about your experience of this terrible disease

a great ice breaker so easy to do

[pamelafrance]

You make me laugh Paul. Ive just had a visit from Speech and Language therapist whose helping me with

breathing exercises. As sometimes I get out of breath when im trying to garden etc. Will let you know how I get on.Is your breathing normal or do you have some problems. I will have to stop bending up and down I think thats the answer. lol.