after effect

[vasco]

is it possible to suffer from vestibular disorder after meningitis episode? has the dizziness i am suffering as an after effect got to do with vestibular disorder? if yes, what can i do to help me recover fully?

[paul1224]

having looked up what u are asking i find i am suffering from it to i have no balance the hospital told me they did not think i would be able to walk again but i worked my way from a wheel chair to a zimmer fram e to elbow crutches with help from my physio i still fall over i have just gotten over 3 broken ribs and also have a ruptured muscle in my arm but i refuse to go back wards to a chair

it has taken me 8 years to get to this stage , i to r ember the date it happened 23 Nov 2003

i got up for work one friday morning thought i had the flu woke up 4 weeks later deaf but the tail ifor me there was no short answer but take every day as it comes and say to your self today will be better than yesterday but not as good as tomorrow

i did love reading your poem but it brings it all back

keep going

[vasco]

Hi Paul244

Thank you for your insight. I am really sorry for your sad situation. It is so horrible. People don't understand. I am inspired by you determined mind. We are in this together. I would do as you said. Take each day as it comes. I hope to get to where you are now. Hopefully you and I would be better with time. Keep working hard. We have to look out for each other. Stay bless paul. Cheers

[daffodil]

Hello -welcome to our forum.You will find lots of support here from those who have been through Meningitis.

Vertigo,dizziness and loss of balance seem very common results of Meningitis.Ears and the cerebellum which control balance are right within the brain and cerebellum particularly is next to the brain stem(where spine goes up into brain).

Like Paul ,am a good number of years post bacterial Meningitis -5 yrs in January.My very worst side effect is vestibular dysfunction and I live in a constantly shifting,moving world.It is not true vertigo ,as in spinning,except when I get very fatigued ot travel in car,but more a sense of my brain moving,dragging and wobbling like a jelly ,with horrid nausea watching any movement.Amazingly I was sent home from hospital with a stick but feel so often I was given wheelchair and crutches.I manage with crutches in house ,butneed wheelchair for any distance outside.Howver I also have ME so part of my fatigue may be from that.

Do do insist you are seen by a vestibular specialist.Not just an ENT person,but a neuro otologist.I was a whole year before referral,but was tested thoroughly -including MRI.It was decided that they couldnt tell what was going on,just that there had been damage to the inner ears and cerebellum.I was given a years of vestibular rehab,which I faithfully did every day,3x a day,but it made my migraines worse(again from Meningitis) and I was told to stop.After that I was discharged,saying there was nothing theycould do for me!!I fell into a depression at this stage,2 years on as I felt I had just been abandoned to a life where I couldnt even stand up without crutches.Luckily I decided to email the specilaist and ask for further review and I am now seeing a neurologist who is treatiNG me for migraine associated vertigo(MAV) .The migraines are significantly better but vertigo unchanged.I am havinhg arest from the preventatives I was taking ,as I reacted very badly and was unable to tolerate the side effects.

Hope not to be pessimistic!I have a friend though ,who has had vestibular rehab and it has completely cured the dizziness.I think in my case there are too many other variables?Paul too has a very hopeful story,so dont despair,but insist on further help.I was told that -oh the vertigo would eventually go away.

Sadly it seems the case that after Meningitis we are pronounced cured of the germ,but unless we have very drastic side effects- limb loss,hearing,sight loss,we are abandoned.I had no follow up and if it wasnt for the fact I have a very supportive GP I would have not seen another specialist.

There is a very good website called brainand spine.org -well worth a look.I have a patient perspective story -under Gillians story - which has lots of great info on vestibular disorders.Also lots of websites -vestibular disorders ,migraine associated vertigo -just google to find.

Do let us know how things go and know that you have folk who understand what you are going through.

[Tiga]

before my VM and after i had problems, luck would have it my doc knew about Vertigo Treatment - Epley Maneuver , it only took one go, and i was cured, so simple, after you hev to sleep up right for one night (easier said then done) but i was like a magic treatment, every cleared up, ok mya not be for you, but well worth asking your doc's if they can do it or send you to someone that can, have a look on goodle, here is one example i took of u-tube for you

youtu.be/hq-IQWSrAtM(Not working as expected?)

best of luck hon

[daffodil in reply to Tiga]

Hi Tiga,The epley manoeuvre is a very specific treatment for those who have developed crystals inside their inner ears.If you have any dizziness most Gps would know how to do it and as you say it is immediate in effect.It is wonderful that it worked for you.As you saty though,well worth asking as its a simple procedure.

Think in Vascos case ,especially as he has deafness,it seesm definately like vestibular dysfunction/damage to inner ears and cerebellum.

[vasco]

Hi Daffodil,

I have been massively inspired by your story and sharing of experiences. In fact ,You have done me a massive favour by giving what I have been suffering a name and what to do for help. I believe strongly that I am suffering from vestibular dysfunction and neuropathy. My inner ears were completely damaged as told me by otolarengologist that did the cochlear implant on me. Even with the devices I could not stil hear with my left ear. I believe my vestibule in the cochlear has been damaged, that's why I cannot determine my posture and even when l am falling until I hit the solid ground. Ever since I was discharged from the hospital, I have been sorting myself out. The social worker assigned to me hasn't got a clue. Last time I fall off from the bus with my back head as I tried for the first time to wheel myself into the public bus. I am new to disabilities and have no one to help me move around. I have also had a serious bruise at the back of my neck because I had a fall inside my room backward and broke my sink with my head. No one is there for me.

On the case of neuropathy, I don't feel any sensation on my legs and part of my arms. It's a struggle picking things up. I hope it would improve with time.

Thank you so much

[daffodil in reply to vasco]

Hi Vasco,

How do you cope with so many dreadful disabilities.I feel totally humbled to hear what you have gone through and suffered.Are you still in a care home?To hear also that you have no family around you is awful.You are an amazingly brave person.

Remember that we all have an inner strength -whether we believ it is our own strength or God's.so hang in there.

[vasco]

Hi Tiga

Thanks for your tips too. I am happy for you as you have successfully over come your dizziness. I would be over the moon if I got mine sorted too. It is doing my head in. I have more problems to it as I have loss of the soles of my feet due to circulation failure caused by septicaemia. I underwent a reconstructed operations where my inner thighs muscles were taken to replace my soles. These muscles are so soft and wobbly. Whenever I attempt standing up, my feet feel like I am standing on a gelly coupled with my dizziness ...lol. you would imagine what happens next ...I will realize that I have fallen off my feet only when I hit the ground. Interesting if I may say. So it keeps me permanently on wheelchair. It would be a feat if I could get rid of this dizziness. I would check out the site you gave me. Thanks again

[Minimee]

Hi all,

I am new to this forum. I had BM about 13yrs ago. I lost my hearing in my right ear - I've learned to cope with that. The only thing that is really getting me down, is this constant dizziness. I don't even have to move. One minute I'm fine, the next everything is spinning out of control. Then the terrible nausea. I thought that after so many years it will get better...but alias, it does not. I have headaches and constant stiffness in my neck. After a dizzy spell, it feels as if there is something pressing down on my brain. As if my brain is to big for the skull. And then its time for the headache. I am so fed up with this whole situation. But I am thankful for what I still have. I only now realize how this sickness can affect a person when I read some of the comments. Good luck to all of you.

[vasco]

Hi Minimee,

I am so de-spirited reading your post. Because what you described is actually what i am going through at the moment, two years after meningococcal septicemia. So that means that i would not be over it with time. I had hoped that things would improve with time, but its heart breaking to learn that it would haunt me for the rest of my life. I am currently under two different vestibular rehab specialists, yet there seems to be no improvement. its so sad going through this horrible feeling. God knows how long i would take it.

[daffodil]

Hi Vasco,Just to say I shall privately email you later,as am too tired tonight.Have your vestibular specialists ever suggested cutting the vestibular nerves from the ears to the brain? This was suggested- as a very last resort- to me,but it means you loose hearing -which you already have lost. The advantage of this operation is that it will stop the dizziness.I would not have sacrificed my hearing,but it your case you have virtually no hearing and to have relief from the vertigo ?In your case,I may be way out,but worth atry?

[Minimee]

Hi Vasco

So sorry that my post had that affect. Maybe your story will be different than mine, who knows. Who knows, maybe you will recover. After I read Daffodil's post I have hope seeing as how I also already lost my hearing in the one ear. I am most definitely going to go to a Specialist and talk to him about this. I don't have anything to loose but so much to gain. Hang in there Vasco, you never know what lies ahead for you - just have faith. It was faith and prayer that brought me to this forum. I felt so alone and nobody could help me. But, wow, there are people in the world who is going through the same things (almost) as I do. Now there's hope, because here are people with advise and understanding.