Chronic bacterial meningitis

[haylee86]

Hi there I'm 30 years old 29 when I had bacterial meningitis. I was in hospital from 13th may for two weeks then was discharged but still didn't feel well. Was home for about a week but the headaches were unbearable so I went back into hospital and was then transferred to another hospital to a specialised acute neurology unit. The specialists discovered I have a defect in the base of my skull which would explain why I have had a c s f leak on and off for the past 7 years. I was discharged on 30th June. I am partially deaf as a result of the disease, my balance has been affected and I get exhausted so easily. I feel very anxious and paranoid. Avoid social situations. I have to have an operation to repair the base of my skull to prevent me from getting the disease again. I take penicillin long term. I had 3 lumbar punctures within a month when I was in hospital not pleasant! I know it's early days and people have been affected far worse than myself. This is a terrible disease and more people need to know about the effects of it.

[Blim]

Gosh. Poor you. I had bacterial meningitis back in 2012 and I still have headaches and I too take amytriptaline ( which I can't spell). I have to take a high dose and it has helped. I am still having vestibular rehab to help with dizziness and I walk with 2 sticks. I also have memory and speech problems but I can work 2 days a week and there is progress although I have to look back over a while to see the difference. I hope you can see improvement over time but don't be too hard on yourself as it is an horrible disease and I don't think most people appreciate how life changing it is as the side effects are mostly hidden. I hope they can sort do your op soon so you don't have the prospect of more meningitis hanging over you. Take care. Blim

[euagelia]

Hello, i am very sorry that you go through such a thing.

Did you find this thing on the base of your skull through mri ? what did the doctors called it excactly? Isnt it strange that you have always had this thing and yet you reached 30s for it to cause you meningitis? maybe you had a head-skull trauma at some point of your life?

[haylee86 in reply to euagelia]

Yeah well I had viral meningitis back in 2009 and I had a spontaneous c S f leak 18 months prior to this so they believe that that's how I have been contracting the disease. I haven't had any head trauma that i know of x

[Hidden]

Hi Hayley. I had bm pneumonia and sepsis in April this year. I have gone from being a very independent 55 year old to a nervous scared and totally different person. My hearing or what's left of it is as good as useless. Balance no good and leads to falls and injury even when using a walker. And as you say constant tiredness and sleep needed all the time. This is a terrible illnes that not many know much about. Unless you have experienced it or know someone who has! They thought I had flu till I collapsed and was in a coma for 8 days. The feeling of being a burden on everyone around is a killer for me. Depression and really dark thoughts rule my mind now.

[DebDog in reply to Hidden]

I truly understand.

[Dawnie55]

Hi haylee86 I can understand how you feel I am 55 and had Meningjitis pnuemoccial ,a stroke and brain absess on 16th may, been a struggle was in hospital about 5 weeks, like you I am now struggling with hearing loss still waiting for NHS to sort hearing out,I have a very little hearing in left ear and nothing in right. I hate any social occasions makes me very paranoid because if in a crowd struggling with everyone talking. The tiredness is getting me down now, I'm hoping I will start picking up soon. Take care and hope your better soon x

[clairelway]

Hi haylee86. Sorry to hear how ill you have been. I had bacterial meningitis 9 years ago. I went to Headway sometime after and had some counselling there. It really helped and I had to write down a 'diary' of what happened and we discussed it as my anxiety was off the wall apparently. I also have lost a lot of my hearing and forget words too which makes me uneasy in social and noisy situations so I still take a low dose of Citalopram which helps. The Consultant also said I should only ever work part time, of which I am lucky enough to do. I was told I get tired as my brain has to 're wire' itself which takes longer and can be tiring, as well as the fact I tend to limp when I am tired. I was also advised to take each day as it comes and I have learned to live with it and keep going as best I can. I was also told it can take about 2 years to get to as good as it will get by which time I had adjusted and do an easier job than I used to and also go to a GP referral aqua class where I have made friends with other people with different problems. Good luck and take care x