Bacterial meningitis : Hi everyone, this is... - Meningitis Now

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Bacterial meningitis

Bandyboy profile image
9 Replies

Hi everyone, this is my first post. I contacted meningitis March of 2018. I was very lucky that mine was caught pretty quickly. I do however have lasting symptoms and would like to ask anyone out there who is at least 1 1/2 years post recovery and what symptoms you still have and what is working for you. At this stage of my recover, my symptoms are head pain, headaches, joint pain on and off, inflammation behind my eyes and fatigue. Oh ya, I am a 60 year old female. Also cognitive , memory issues, light sensitivity noise at times.

This sight has helped me stay somewhat sane through this life changing ordeal!

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Bandyboy
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9 Replies
Chip32 profile image
Chip32

Yes I got bacterial meningitis in April this year myself suffering with headaches all the time, myself very lucky court in time , you have to program your mind on something all the time to live with it tried everything. but good luck and take care

Jackiemerritt22 profile image
Jackiemerritt22

Please read up on cranial csf leaks as you have a most off the same symptoms i had.

I contracted Bacterial meningitis in may 2017 i was only 46 and the type i got is very unusual in that age group. July 2018 diagnosed with CSF leak thats how i got meningitis.

leak has been repaired but unfortunately im still suffering with all the symptoms and am awaiting stent operation as my venous sinuses are narrow and its causing me to still leak.

melpars profile image
melpars in reply toJackiemerritt22

How did they discover your leak, and what prompted them to search for that a year later? I was diagnosed with BM in May 2018 and still suffer with headaches, neck and spine pain, and a general all over feeling of weakness, fatigue, and just unwell. Also terrible muscle aches and I just keep losing weight. Went from 110 to now 89 lbs. I have traveled to a Dr 7 hrs away, and they don't know why I'm feeling this way. I finally went back to work part time, but it's a huge struggle and takes so much out of me I can't enjoy other activities such as events with my family, friends, and church. I was 52 when I caught it.

Jackiemerritt22 profile image
Jackiemerritt22 in reply tomelpars

Sorry only just got back but been away.

I had a water like fluid coming from the right side off nose it was very minimal and only really happened when i lent forwards for a while. After the meningitis i looked online and that was the first thing that came up and all the symptoms where the same. Had reoccurring ear infection and water behind ear for years then my hearing started to go the meningitis was the main one thought. When i was admitted to hospital they could see something around my ear and also on discharge paper it state ??? mastiod which is behind ear. I saw an ENT just before i was discharged and he said the scan was fine no follow up appointment nothing. so went to GP she said it was sinuses and dismissed CSF leak but did Re refer me to ENT saw same one again he also dismissed it said it was sinuses and to blow my nose more. Saw GP again re referred to another ENT he said yes he could see something but not sure what so had booked another CT scan i also told him about fluid from nose he asked me to collect some (very hard to do as its just like 1 drip) appointment was made for top ENT so another 3 months later i see him and he went yes you have a CSF leak in tegmen bone (behind ear) and i had to be refereed to Addenbrookes for surgery. So it took year and 4 months to get it fixed. As i mentioned im awaiting further surgery. so i still have all the symptoms full head pressure around nose and eyes tinnitus memory problems and i have trouble with finding the right words. Its really hard to get someone to listen as they are rare but you had meningitis and your symptoms are very much like mine. All i can suggest is keep pushing. The reason i got meningitis is because there was a hole in my dura thats how the bacteria got in. Good luck If you need to know anything else please just ask

Jackiemerritt22 profile image
Jackiemerritt22 in reply toJackiemerritt22

The inflammation behind the eye is also a big sign i have that to.

Bandyboy profile image
Bandyboy in reply toJackiemerritt22

Thank you for sharing. I contracted bacterial meningitis through a ear infection that ate a whole through the brain barrier. After being released from the hospital and having home care for a week to continue IV antibiotic, I had to have ear surgery to remove remaining infection in mastoid and do a skin graph to repair the whole. I do feel very lucky that mine was caught fairly quickly, but am frustrated with the continuous after symptoms. I am working with a naturopath now in trying to detox the thumbprint left behind by the meningitis. So far she is the only one who has had some answers/treatment on this. I wish you well in seeking answers and pray that we all have strength and faith that we can have some pain free days ahead.

Boneyhay profile image
Boneyhay

Hi I am 15 years post bacterial men with sepsis

I still have bad after effects no balance 3%hearing you just have to go one day at a time I made the mistake off trying to push my self back to where I was big mistake do what u can when u can if your like me you take 2 streps forward but back 3 but never give up

Boneyhay profile image
Boneyhay

Forgot to say I was 48 I am now 63 male if u want to chat contact me good luck

Earthfox20 profile image
Earthfox20

I had VM in 1994 and made a full recovery but was off work for 6 months. I think I was lucky. But in Sept 2018 Bacterial Meningitis struck and 16 months later I am back in hospital. I am deaf, my vision is impaired, I am wheelchair bound and doubly incontinent. My body is swollen with all sorts of tingling and throbbing. Sounds something like Restless Legs Syndrome. Condition has gone downhill rapidly over past 3 weeks. Seems we all have slightly varying conditions but basically the nerves in the body have been shot to pieces. I’ve been told I won’t walk again. Doctors at a loss as to how to treat me. They can’t come up with a diagnosis.

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