Needing answers...

[Texan]

I was diagnosed with bacterial meningitis two months ago, in still on antibiotics and trying to understand what's all happened and happening now. I'm having Vision issues and severe dizzy spells as well as headaches that come and go. I don't know what is "normal" and what I should be concerned about. I have chronic pain from many surgeries as well as osteoporosis, spinal stenosis, diabetic and the last goes on and on. ..any advice I'll take!!!

[StrawberryCream]

Hi. Sorry to hear that you have suffered the nasty life threatening bacterial meningitis. Do you know what strain? Are you still in hospital that you are still on antibiotics?

All the post meningitis symptoms that you are describing are frequently experienced after BM. I had double vision for many months but it did eventually resolve. I also had sensations of my brain spinning if I turned or bent quickly and had to walk with a walking frame and then 2 walking sticks and gradually progressed to one. I still have balance problems because the meningitis damaged my vestibular system. I continue to have major falls, or going splat as I refer to it, at least 9 times a year. But that is not to say that your dizzy spells will continue as 2 months post meningitis is still early days and more recovery will occur and no doctor would at this stage say to you that this is a permanent long term state. I also had on going severe headaches but they have eventually resolved and oddly I don't get any headaches now but just a feeling in my head, foggy and not right, that I now know is effectively a headache and which I have learnt to take analgesia and that will resolve it after a few regular doses. Fatigue can also be a problem for sometime and you need to rest a lot and pace your activities so you don't over do it as that could set back your recovery.

Am not sure if you are in the UK as you have chosen the user name 'Texan'? Whether you are or not I would suggest that you take a look at the Meningitis Now website MeningitisNow.org where you will find lots of helpful info about what to expect during recovery from Bacterial Meningitis. If you are in the UK then I would also suggest you ring the helpline 0808 80 10 388. It often help to hear an understanding and supportive voice and they will send you relevant information, plus there are other support you can access.

[sdjohnson231]

Two months is extremely early in your recovery process. I'm a year and a half into my recovery. I know from what my infectious disease doctor has told me is that a new normal is not likely for at least 2 years post diagnosis. What you are experiencing is completely normal for what you've been through. I was on and off antibiotics for the first 4 months following my diagnosis, most via Picc line. Are you in Texas? I'm in Kansas. Please continue talking with your health care specialists, their nurses, etc. Do you have occupational or physical therapists coming to your home?

[Texan in reply to sdjohnson231]

Thank you so much for your responses!! I'm in Texas and just called my doctor...just frustrated with dizziness and headaches!!!

[Dawnie55]

Hi Texan I know exactly how you feel I had Meningjitis pnuemoccial ,a strok ans a brain absess in may and I was fine before it now nearly six months on I'm still struggling with things,my vision all over the place keep getting flashes in front of eye,had the checked told they were fine, I had and still have really bad dizzy spells no sign of them stopping yet. I had a bad back before being ill but the stroke and Meningjitis have it worse the pain is really bad some days but been given medication to help ease it hopefully over Tim we will all feel a lot better ,I've been told more than once I'm very lucky to be alive so I'm just taking one day at a time now ,I also use a stick to help balance if you want find any any advice this is a brilliant site take care

[maineknitter]

Hi Texan. I'm in Maine as might be guessed by my user name. At this point, I am 5.5 years past the BM diagnosis. I'm still going through this process of making life better. I get migraines and aura with them which is a variety of senses being weird, flashes of light arcing in my lines of sight like horizontal lightening, scents that are nonsensical for what is nearby, and dizziness as well.

I see a neurologist from the beginning of this and still seeing the same one. I have been told by him as to how the brain heals slowly and in six month steps down in intensity of healing over two years.

As for what is normal now, hopefully things are calmer a bit as you are about 5 months out from getting sick. I call the neurologist when I am on day four of a migraine and the abortive meds and pain rescue meds aren't working. Then, it's a steroid taper for four days. If migraine still there, we do another steroid tapered for four days. If still there, it is usually to the ER to see if they can break up the migraine. One thing that is working on mine currently is Benadryl, Toradol, and Phenegrin. If that doesn't cut it, then I ask to be admitted for dhe-45 protocol that requires IV administration and monitoring. Unfortunately, the most recent migraine got to beyond 37 days and I required a occipital nerve block. Unfortunately, I was not sedated for it. But I did get numbed with something like novacain.

Anyway, I also go to the ER when I can't stand the pain even if the process is not at that step yet. I don't believe that pain is useful for me even though I have developed a large amount of acceptance of this kind of pain, it does get to where I can't be zen about it anymore.