They just don't understand and neither do I.

[yomomma]

I wish there was a group or just one person I could talk to who had bacterial meningitis. I feel so all alone. It's the worse a person could go thru besides set on fire even that's what it felt like when I had it for weeks. You could never prepare for this. But as a man on the outside I look good and strong. But inside it's hell. It still is a year later. Better for sure. 3 to 5 years is correct but longer if you have bacterial meningitis for weeks. The damage inturnally I could write a book but still I look fine so I should go to work. But I can't

[Keep-The-Faith]

I have viral, in my 11th month. There are No words how awful it is in every way! I'm in bed 95% of my life with so many symptoms. And I feel no one understands or cares honestly.

Meningitis Surrvivors & Supporters is a fb group..you will get alot of help & support there...please join. Hope things get better..stay strong!!! 🙏

[Jackiemerritt22]

Hi my wife Jackie had bacterial meningitis April 2017. Still recovering now. She's not here at the moment will get her to reply to you if it will help .

[hawkeye777]

Hi, you are not alone for sure but it does take a lot of positivity to keep your head above water and remain focused on getting better, which is a painfully slow process as you know. The consequences are depressing and brutal and not many people understand what we are all going through apart from close family and friends. After 9 months, which I appreciate is not a long time in recovery, I still have a foggy head and balance issues from BM, which is so debilitating and impacts on almost everything except sleeping for me. I am only now back to driving and my next goal is to get on my bicycle and then maybe one day my motorcycle. It really is one day at a time and very frustrating it is but you/we have to keep hoping.

Stay positive and look after yourself. All the best!!

[Tortie360]

Hi. I too have had bacterial meningitis (meningococcal) in March 2017. So, well over a year and I am still suffering with severe inner ear pain, headaches and in general feel like I'm going out of my mind. The slight bit of stress can seem overwhelming and bring on all my pain. I've just returned to work and feel as if I've changed as a person and cannot do the job any more. I'm seeing a counsellor which is helping me deal with this. I'm also now seeing a neurologist for nerve blocks in my head and doing reflexology. I just want to say that I understand what you are going through. Please keep on fighting and try and get help with what you're going through. It might not seem like it now but it will get better. The biggest thing or biggest battle is accepting that this has happened to you and you have changed because of it. After that it gets better each day. Think positive as the alternative will just depress you. All the best. Aasiya. X

[Jackiemerritt22 in reply to Tortie360]

I had pneumococcal meningitis last may. I am concerned that you still mention pain in your ear, I had been suffering from what i thought was middle ear infections for years. This was not the case after 4 ENT i was finally diagnosed in June off this year with a cranial CSF leak which was repaired in september. This is why i got the meningitis in the first place as there is a hole in your dura that infection can get in. Unfortunately i am still suffering from high pressure headaches which include memory loss foggy head struggle to find right words ect, I was lucky to a degree as i had CSF leaking from nose not a lot but when i bent forward for a while it would drip very slowly and its like water. but that was how the CSF was confirmed You can also get CSF in the spine it causes headaches foggy head ect but dosn't case meningitis. Please request to see ENT

[yomomma in reply to Jackiemerritt22]

Thank you for your reply and feedback. I had my spinal cord cut by a doctor. That's how I got bacterial meningitis. I did have a deveated sythom years ago and the ent fixed it but he cracked my skill and when I leaned forward I would leak spinal fluid. He was freaking out and demanded I go to the ER immediately. But my spinal surgeon for some reason didn't seem to care and sent me home knowing I was leaking spinal fluid all over his office. He stiched me up and sent me home.

[Billochick in reply to Tortie360]

Sorry to tell you this, but my daughter had bacterial meningitis when she was 5. She's now 43 & still suffering terribly with anxiety, can't cope with everyday situations & has no friends because of her behaviour. It's really sad to see. She's on medication now, but it still doesn't take much to get her uptight. At times we've been so afraid that she would do something to herself. Bacterial meningitis can cause an acquired brain injury if not diognosed & treated immediately. My daughter was miss diognosed for almost two days before I freaked & they finally did a lumber puncture & found out what it was. Then it was a dash in the ambulance to another hospital, then to make things worse they put the needle in under the skin instead of a vein, so she got no medication all that night until midday the next day. They had her hand bandaged & no one would take any notice when I told them her hand was hurting. She had massive head pain & clawed at us when we went near her. She had no idea who we were. Id just like to say to everyone, please don't judge people by their behaviour & just put it down to bad behaviour, because there might be an underlying problem. As I said all my daughters friends have walked away from her, when she cannot help what's happening to her.

[Tortie360]

Thanks for the advice. I am due to see the ENT in December. Hope all is well for you. X

[Packard]

I had a severe bout with bacterial meningitis in 2002. I now have 24 hour a day migraines. I kept searching an I found a doctor that cares. I take opioids for the pain. Ofcourse now they are trying to ban opioids. You just have to keep fighting and searching for help. Do not give up. Don't be denied the help you need. G D Bless you and yours.

Shalom, Packard