After Bacterial Meningitis

Posted by meningone @meningone, Nov 23, 2018

I don’t know if I have TBI, or what is wrong with me. I contracted BM late April 2018 and since then have had all sorts of complications. Headaches ranging from moderate to severely debilating, horrible neck pain that never goes away & makes it almost impossile to turn my head to look from side to side, and definately not behind me. Spine and rib pain. It seems that every muscle and joint in my body hurts, keeping me in constant daily pain.Very often it feels like my muscles or something inside my body is on fire. I have such trouble with memory and concentration. I cannot tolerate extra stimuli anymore. Too much noise, too much decision making, stress, too many people talking, get me really anxious and I feel I need to get away from the situation and I kinda just shut down. Things like flashing lights, loud patterns, alot of showing of mixed changing colors and things like that make me nauseous, dizzy and anxious. Driving or riding in a car brings on the headaches, pain, and exhaustion. I am sooooo exhausted/fatigued all the time. I always feel like I need to rest, but resting doesn’t help. On the other hand, pushing myself and putting myself or being in these situations do make it worse. But I can’t avoid life, nor do I want to. I want to enjoy my family and friends. My grandaughters. My church family. I am at a loss.

Hello @meningone. Thanks for posting. Welcome to Mayo Clinic Connect.

I'm sorry to hear you are suffering from such symptoms. Do you believe you have a TBI that stemmed from your BM? Have you been seen by your primary care physician?

REPLY
@jamienolson

Hello @meningone. Thanks for posting. Welcome to Mayo Clinic Connect.

I'm sorry to hear you are suffering from such symptoms. Do you believe you have a TBI that stemmed from your BM? Have you been seen by your primary care physician?

Jump to this post

Hello @jamienolson. I don't know if it's TBI, ABI, or really what it is? But yes, all this happened after my BM. I had none of thee symptoms before. At first I thought it was because I was newly ill, and still on a round of 10 days of IV antibiotics at home. But it kept going on & on. It's 7 months later and I'm still experiencing these symptoms. I have seen my PC, at 1st she was shocked I was still experiencing after effects, and didn't understand why I was. Then she said it was inflammation and should go away. I see her monthly and we are trying different preventatives and abortatives for pain, but she doesn't know why this is happening. I didn't know if anyone else on here has went through this?

REPLY
@meningone

Hello @jamienolson. I don't know if it's TBI, ABI, or really what it is? But yes, all this happened after my BM. I had none of thee symptoms before. At first I thought it was because I was newly ill, and still on a round of 10 days of IV antibiotics at home. But it kept going on & on. It's 7 months later and I'm still experiencing these symptoms. I have seen my PC, at 1st she was shocked I was still experiencing after effects, and didn't understand why I was. Then she said it was inflammation and should go away. I see her monthly and we are trying different preventatives and abortatives for pain, but she doesn't know why this is happening. I didn't know if anyone else on here has went through this?

Jump to this post

Hello, @meningone. I'd like to join @jamienolson in welcoming you to Mayo Clinic Connect. It sounds as though you've dealt with a host of challenging symptoms and are still seeking answers. It also seems like you have a primary care provider who is really looking out for you in trying to understand the situation and helping you with the pain.

Here is some Mayo Clinic information on meningitis/bacterial meningitis in which you may be interested:

– on meningitis symptoms, causes, treatments, doctors: https://www.mayoclinic.org/diseases-conditions/meningitis/symptoms-causes/syc-20350508

– on identifying meningitis, with a video: https://newsnetwork.mayoclinic.org/discussion/infectious-diseases-a-z-identifying-meningitis/

Since you mentioned the symptoms you've had post-bacterial meningitis, I'd also like to introduce you to a few members who have talked about meningitis and may have some input for you: @murraygamble @dgosney23 @lyndsey611@jjtaylor95 @junebug222. I'd also like you to meet @johnbishop.

In addition to the primary care provider who has been working with you after your bacterial meningitis, @meningone, I'm wondering if you have seen a neurologist or an infectious disease specialist? If so, what is their opinion on your situation?

REPLY

Hello @meningone. I would like to add my welcome along with @lisalucier, @jamieolson and others. There is another discussion that you may want to join here:

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

There is a link in the discussion to TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome which seems similar to some of the symptoms you are experiencing.
— — https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

REPLY
@meningone

I have had many aches and pains since contracting bacterial meningitis a year ago. Strong headaches, neck & spine pain, muscle pain, to name just a few. The Dr.'s are uncertain as to why I am experiencing sequale so long after the disease. Recently my lower back woke me up in the middle of the night in excruiating pain. I had not done anything to hurt it. X rays revealed nothing. I then started experiencing muscle cramps in my hands and feet and a fast, irregular heartbeat. I had a regular check up 4 days ago, and labs were taken as they are every 3 months or so. The nurse called yesterday and wants me to come back in for a retest. My potassium level was 5.9. She said it should be 2.?. I'm thinking it is probably just a blood draw problem, but with the new uncomfortable symptoms I'm wondering if anyone else has experienced this and if so, is this anything to be concerned about? I can't go back for blood test til Tues. & it takes another 3 days for results to come in.

Jump to this post

I also had extremely high potassium numbers but it turned out those numbers were false. If blood is drawn and it sits for awhile prior to testing the blood breaks down and that raises the potassium #. Suggest you have the test done immediately after the draw or have them put your draw on ice. Another option is to check the potassium number in your serum, not whole blood.

REPLY

I have had many aches and pains since contracting bacterial meningitis a year ago. Strong headaches, neck & spine pain, muscle pain, to name just a few. The Dr.'s are uncertain as to why I am experiencing sequale so long after the disease. Recently my lower back woke me up in the middle of the night in excruiating pain. I had not done anything to hurt it. X rays revealed nothing. I then started experiencing muscle cramps in my hands and feet and a fast, irregular heartbeat. I had a regular check up 4 days ago, and labs were taken as they are every 3 months or so. The nurse called yesterday and wants me to come back in for a retest. My potassium level was 5.9. She said it should be 2.?. I'm thinking it is probably just a blood draw problem, but with the new uncomfortable symptoms I'm wondering if anyone else has experienced this and if so, is this anything to be concerned about? I can't go back for blood test til Tues. & it takes another 3 days for results to come in.

REPLY

I am post bacterial meningitis 2 months. Spent 14 days in the hospital and spent 8 weeks with a pic line antibiotics at home. The headaches omg when you try to explain to others they will never fully understand the pain and also the pain in your body and pain in stiffness in the neck during those times. I was bed ridden 12 days in the hospital that's how bad I was.
Now 2 months after I do still have effects but most mentally. My shirt term memory is bad now and even some long term. I dont remember 2 to 3 weeks up to when I got sick and most days of me being in the hospital. I mean totally out of it sleeping and not knowing where I was. Omg I also had hallucinations for weeks after those have gotten better. Also concentration is bad for me now. I cant have normal adult convos because I cant concentrate am all over the place and cant remember what they say. That's a huge problem. Also I cant do simple math now in my head like before because well I'm an adult lmao. Reading also takes me longer now too. These are big problems for me because I am an adult we need to know these things for life. I feel like I went backwards in life.
I've asked my primary docs what they thought how long this will take and they didnt know. He does want me to see my neurologist so I go tuesday and csnt wait because he is going to know more. Plus probably get me a scan to see things. Now I went a week after I got out the hospital back to the ER cuz my BP was high anyhow had a mri on my brain and it was still swollen so idk what now how it will look. I also see my ENT and Infectious disease next week too.
Let me add to this sorry it's long. I had an ear infection before all this for like 2 days then I was diagnosed with bacterial meningitis and sepsis and it started with my ear infection and that spread to my mastiod bone while in the hospital I had a tube placed in my ear so I went home after 14 days then back to my ent for follow up and ended up having a mastoidectomy. That was 3 weeks ago. So I'm still having issues dont know for how long
Also about the potassium mine is always very low… but I wasnt eating either nothing for 14 days bites here and there but that's it.
Please reply if you would like someone to talk to or share your issues and I can share mine lol it's just not many people have lived through this at least no one I know. Bacterial meningitis is very deadly more then viral actually. Maybe that's why they dont know much about the recovery yet?

REPLY

I was told by my primary and read that you can definitely suffer brain damage from having meningitis. I myself have some issues too and I'm 2 months post bacterial meningitis. My issues are problems with memory, concentration, simple math and numbers, reading and having adult convos. Also I hallucinated really bad for like 3 weeks after because this all started with an ear infection in my right ear and that is the side where that is processed at. I was told the first few days in the hospital I was conscious all the time but I was asleep and didnt hear anyone I was there but not there.

REPLY
@mgarthwait12

I was told by my primary and read that you can definitely suffer brain damage from having meningitis. I myself have some issues too and I'm 2 months post bacterial meningitis. My issues are problems with memory, concentration, simple math and numbers, reading and having adult convos. Also I hallucinated really bad for like 3 weeks after because this all started with an ear infection in my right ear and that is the side where that is processed at. I was told the first few days in the hospital I was conscious all the time but I was asleep and didnt hear anyone I was there but not there.

Jump to this post

I know that feeling I had hydrocephalus and was that way for a couple of months before and and after my shunt being placed, seeing your post brought back memories of it all !

REPLY
Please login or register to post a reply.