Bacterial Meningitis experienc

I am trying to recover from Bacterial meningitis, it's been 10 weeks now. On April 20th I stayed home from work because I just wasn't feeling right, I thought I was having a bad allergy day my head just seemed kind of stuffy so I took some benedryl and kind of napped the day away. When my husband came home I made burgers for us and went to bed early. I woke up a couple hours later needing to throw up, I thought it was food poisoning, but when I to again in 15 minutes (very forcefully I might add), I thought it was weird. I went to the guest bed so as not to wake my husband. I was throwing up all night, I don't remember any pain at this point. My husband checked on me before he went to work and brought me water and 7-up that I requested (I don't remember this), he thought it was food poisoning too. When he got home he found me completely unresponsive. He took me to the ER 50 miles away (the closest). I too was fortunate to have a ER Dr. that checked all possibilities, including the lumbar puncture. Right away when he saw the fluid he said its bacterial meningitis (all this was told to me by my husband, as I was in a coma at this time). Apparently I was having seizures and had to be restrained. After the diagnosis they started treatment and Air lifted me to a bigger hospital in a larger city. I was in a coma for 2 1/2 days, and another 9 days in the hospital (I probably should have stayed longer but I whined and complained until they let me go), and 7 days at my fathers trying to get well enough to travel the 180 miles home (even after that week it was still hell riding home for 3 hours in a car. The pain I had when I came out of the coma was so intense! They would ask me how my head felt it was fine (I never got the headaches), but, EVERY joint and muscle hurt like I was in labor, yes, I think meningitis pain is equal to labor pain it just lasts longer. I was frustrated by the lack of info I got, and when I asked how long until I felt better I was told every case is different. 10 weeks later my hearing is really messed up, it's like my brain can't figure out the signals my ears are sending it. I can't even process music at all (boohoo) its just a lot of mixed up noise. I can't work because my hearing is so weird, my vision changes all the time, I feel like I'm always having a head rush, and my balance isn't very good. I'm very grateful for the Trust and the people who have shared their stories.

13 Replies

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  • Hi Dynomite, 10 weeks after getting this terreble desease is not long, its a long and winding recovery that takes its time. I am now 18 months post bm and things are slowly getting better. You can read my blog here, maybe it will help.

    meningitis.healthunlocked.c...

    We have a trust over here that can help with counseling and questions, do you have anything over that side of the pond?

  • I do :)

    What do you say about numbness around the lower half of the rib cage? Could this be a side effect of the lumbar puncture? Shoulder and arm pain are really the only pains I have left but they can be really bad and wake me up often then I can't fall back asleep. This is really messing with my sleep, any suggestions? Other post BM people have answered most of my other questions, at least that I can remember, haha! Thank you so much for this site, everything I have learned about this crazy illness that I got I learned from this site.

    Dynomite

  • I had BM aout two and half years and have minor issues since then. All I can say that I am blessed to be be still here and I realize it its better to deal with what issues I have instead of the alternative.

  • Sounds like you need to have more followup Dynomite. Perhaps seeing an ENT that specializes in hearing and vestibular balance. This happened to me and when I saw the specialist he wasn't sure if my hearing and balance losses were from the meningitis or from the antibiotics used to treat the meningitis. Yes you have survived but I have found 2 years post BM that I am still getting to know this new person that I have become. I am just now getting tested by a neuropsychologist as I had a hemorrhage of the brain through into the sinus from the infection. One day forward at a time. Kind Regards, Jeffery

  • I would agree with all of the responses I am 7 years post BM and it cost me both legs below the knee, it took me 5 years before I was in a position to return to work full time. I still have memory issues and mood swing but as has already been said, you are still alive and can take small steps on the long road to recovery, be realistic and accept help when you need it, but do as much as you can for yourself.

    Regards

    Mick

  • Hi Dynomite

    Sorry to hear you are having bad after effects. I had BM about 23 years ago, and can do most tings that I want to do! the best thing I think is to take one day at a time, be grateful that you are still alive, and don't push yourself too much. I hope your family are understanding, good luck, Sorba.

  • Yes, my family has been very helpful. I too am grateful to be alive. Thank you for the advice, I'm not very good at not working or overdoing it but my brain makes me take it easy, I can tell if I've done too much :) I will take it easier now that everyone here that has been through this is telling me too.

  • Wow, you sound GREAT for being only 10 wks post BM! At 10 weeks, I was just coming out of the ICU and going into a regular 2-person hospital room. My legs' pain was still EXTREME! I still had a large "wire tube" (looked like an iron lung) over my body because the weight of a sheet was much too painful. All my toes and large sections of my lower legs were coal black with numerous sections of raw tissue from debriding by my doctor..

    I think it's interesting to note that during the 6 months of my hospitalization, I never had a single moment of nausea, even with antibiotic IV tubes, blood transfusions, and a heparin lock.

    It's been 35 yrs now and my toes area STILL hurts but I can now wear a closed flat shoe.

    I'm one more example of the amazingly different after effects of this horrible disease.

  • I'm 12 years on from men B ( mid 40s) and I can relate to your frustrations. No one can give you a definitive answer about when you'll be well and it would be great if someone could have said to me 'it will take x months' I had a giant sized headache for 6 months after my illness and despite making what looked like a full recovery my emotions were all over the place for a very long time. I went back to work after 6 months and gradually life got back to some semblance of normal. I am still much more short tempered than I was pre BM. Although I could just be a grumpy old thing :). It does get better but it's awfully slow. Allow yourself to be 'in recovery' for as long as it takes. Don't let anyone hurry you and you will get there. Your system has taken a huge shock and being in a coma for that long will take many months before you are restored, irrespective of any problems such as your hearing. That may just be temporarily problematic. I do hope so. Take care and remember your impatience to be well is a good sign. Just be kind to yourself :)

  • hi

    i had mb close to ten years ago still suffer bad with balance loss off hearing and all manor off things

    worst are water infections 2010 spent all but 8 weeks in hospital with infections lost 5 stone

    same again feb 2013 4 weeks under critical care team

    but never give up in my case every 2 steps forward was meet next with 3 back but still here still fighting

    my doc catch phrase he is paul died twice but still here and i hope to be in what ever state for a long time

    just take it one step at atime

    i had 3 months in hospital when u had mb and told i may never walk again

    all the best to every one

  • its a no answer question my Mrs is 2+ years after BM The first year was physio re-hab etc and it helped

    she had lots of problems processing things like watching TV Shopping and Ear problems.

    our second year has been a down hill experience. loss of mobility Carpel tunnel op to try and help with the feeling and use in her hand failed (ICU Neuropathy) she drops everything cant feel her fingers.loads of ear infections weekly nearly more loss of memory, cognitive processing functions, skin problems, muscle pain, they think from the nerves. incontinence,depression, the list goes on we had 2 new docs involved who have done a case study of the Mrs

    both say Wife's condition is because of her illness and the severity of it.there reports say wife was classed as needing critical care for 52 days. BM Has severely battered her body from head to foot. get onto your doc / hospital i push for all the help we can and they have been good Mrs has just been referred back to re-hab centre again. and when she comes out of hospital im getting onto OT Occupational Therapists as 2 years on we are still using a comode down stairs many times as mrs cant get up stairs, any problems you have now Dynomite that weren't present before could be down to BM. Keep the pressure up on your Docs / Hospital OT.Physio etc Good Luck

  • Hi Dene,

    Thank you for the reply. I'm sorry the Mrs. is having such a hard time. I feel very blessed in that I'm doing pretty good physically ( started with baby steps literally and am up to walking a mile without feeling too bad), although everything makes my muscles sore. My biggest issues are sounds, balance & dizziness. Sounds like your wife's had the same. Were the Drs able to give her any definitive answers to any of her concerns?

  • I'm sitting next to my son who has bacterial meningitis in the ICU and reading your story. Thank you so much for writing.

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