Meningcocal Bacterial MENINGITIS 4 cases and survived , help required

[iaveadream22]

Firstly Thanks for reading this thread

I am iin My 50s now and sadly about 1 year ago i had My 4th Attack of meningcocal Meningitis ( Yes 4 so I guess i should be pleased Ive survived I suppose ) As a summery i had my first 3 attacks in childhood and had appeared to have had little effects. Sadly 30 year on and I was again in hospital in a coma with Bacterial Meningitis again . Regretfully this time I have suffered with complications and to be honest plague My life . The main issues are severe Memory loss which is so embarrishing as i will remember some ones name or information but then its lost and i dont know whom im talking to or even some basis knowledge . Another complication is My hearing is impaired impaired and I seem to have difficulty with my breathing from my nose and i hear sounds in my ears , which is difficult to explain . I also suffer head aches freaquently and take regular pain killer , co codomol ,. I feel it necessary to only work part time afew days a week as my energy levels are poor and im often tired . I also believe my eye site was effected but this is difficult to engage due to my age early 50s .

I know Meningitis can effect people in different ways , however i would appreciate any person who has suffered or has medical insight in to this condition to email me back.

Thanks Kindly

[Jennyoxford]

Hello would firstly like to say well done for coming out of this vile illness not just once but 4 times (my daughter had it two years ago and had 4 limbs amputated). I know my daughter had a blood test which was to see if she had an immune deficiency which would make her more likely to have infections. Also i have been told about another person who had a particular brain problem which made him have it twice. Your gp needs to refer you to a specialist i would of thought to look into this. The Meningitis Trust are very helpful, have you spoken to them. Take Care

[iaveadream22]

Hi Jenny

Im so sorry to hear about your daughter and the efefcts of meningitis which as you say is a vile illness and damaging .

Your absolutely right I do have a life long immunity issue and suseptible to meningistis hence 4 attacks , in which the last one nearly killed me last year .. My thoughts to your daughter , How old is she ?

I take life long penecillin every day twice but this offers no guarantee.

Its a worry and i guess i live in hope that i am not subject to any future attack as i would not i guess pull through , does your daughter suffer with any other effects ?

Kindest regards Keith

[Jennyoxford]

Hi Keith, She thankfully does not apart from her limb loss below the joints. She is as bright as a button and advanced for her age, she writes without any help and is doing better at writing and drawing then many children in her class. I would say it has taken nearly 2 years for her body to get over the illness. She has only just been able to say her birth date again, she talked alot about her birthday before she was ill and after the illness could never remember her birth date no matter how many times i told her. About two weeks she told me her birthdate and i was really pleased,. Her lower limbs have had countless infections inc bone infection twice. She does display difficult behavious but we are not sure if this is just frustration and loss of control or problem bahaviour in general, Time will tell.

When the vaccine is introduced can you ask to be first on the list? The vaccine is now getting ready to be licenced and the various charities have to now campaign to the government to get it out there? I know for sure ill be requesting for all my children and immediate family as soon as its available.

[Punkysticks]

Hi there...

I had BM when I was 12...and suffer from all the effects...and more that you describe...the 2 biggest things that I have found to help me...are...seeing a good cranial osteopath and 4 yrs ago I took up rowing which is all over body workout and non-impact...these 2 things have transformed my life...I am 48 now...and now I am raising money for the meningitis trust...this year I rowed 2012 miles on a rowing machine...and yesterday I finished my 2nd 100km(62 mile) row in 8hrs. So far I have raised £2500 hoping to make £3k by the end of the year.

I hope you can find the same help I did...good luck

Darren

[ignoreit]

Wow iaveadream22, 4 times! Yikes! But now some questions about your aftereffects:

1. Re the sound in your ears, is it kind of a crackling sound when you move your head?

2. Re your frequent headaches, are they NON-throbbing?

3. Re your difficulty breathing through your nose, do you sometimes also have an unexplicable RUNNY nose? Do you have a chronic dry cough?

[Beckman81]

I am 55 years old and had bacterial meningitis when I was 2 ears old. Of course I don't remember it but I have been told many times that I am so lucky to be here and not have many lasting side effects. I have hearing loss, mostly in my left ear. I have grown up with that so I don't know any different. I didn't realize that I had seizures until around age 20. I was with my then boyfriend and had one during my sleep. I have always slept alone so I didn't know I had them. Sometimes I would wake up & feel awful, had headache, dizzy and no appetite for a bit. I went to a doctor who referred me to a neurologist. I had a lot of tests done, even went to Mayo. They said I have scar tissue that was too small to detect but large enough to give me problems. I was put on medication. It took me a long time to adjust to medication. Whenever they've changed to different medication it was hell adjusting. I am now on Lamotrigene and it is working. My dose has to be changed at times. I still have seizures sometimes but not like I used to and my family watches me very carefully. I am very unsteady on my feet and just a klutz. Have had vertigo 3 times. At times I feel like I am in a fog. I understand why I can't remember things & why I can't understand directions that I am given. I feel like an air head sometimes. I have learned to live with it. The symptom that is the worst is the hearing loss. I always that that I should get a hearing aid but according to what I have been reading they would not help. It is so refreshing finding other people that are experiencing these same things.