Changes to the brain

[Innis]

Hi so it's near a year since I contracted BM.. Six weeks in ICU and few days induced. I am now on medication to prevent headaches and also for damage to nerves. I still have the constant feeling on a hangover and that of post pins needles on left of head and face. I'm seeing neuro psychologist and neurology team have mentioned brain changes.

Please could someone share if this happened to them. My concern, did I do something wrong during my recovery for to cause this? I know we get good and bad days but a year on...

[StrawberryCream]

I have a frontal brain injury/dysexecutive syndrome as a consequence of bacterial meningitis & septicaemia, cerebritis and frontal lobe abscesses. If you click on my name my profile will explain more. You didn't do anything to cause the brain changes the BM caused it.

[Fiona-bennet]

Hi it’s been about a year for myself as well. I still have constant headaches my fingers are now constantly ice cold and i still have bleeding in my right ear. What medication were you put on as everything they try for me does 100% nothing

[LMains]

Hi Innis,

I am so sorry to hear of your pain, and I would echo what the others said- it was the meningitis that caused the damage, not anything that you did wrong.

I will tell you what worked for me, but keep in mind that my pneumococcal bacterial meningitis was much less severe than yours- I was in a coma for only 3 days. I had bad headaches in the months following my 3 week hospitalization. My neuro put me on two medicines- I don't remember the first, but I know the second was gabapentin. Now, rightly or wrongly, I am just not a big medicine person and I decided to taper off of gabapentin (it did not seem like it was helping anyways).

I went to an old-school Chinese acupuncturist for 4 months. The needles hurt! (A year later I went to a different doctor- much younger- she said she was "new school"- put needles in completely different places and they did not hurt, but I am not sure they helped). Who knows if it was the acupuncture or just time, but by 7 months or so, my headaches went away.

If you search on here, you will find other people talking about cranial massage. That was going to be my next "go-to". In my case, the headaches felt like pressure headaches- like there was a blockage somewhere, not allowing my cerebral spinal fluid to flow, so massage makes sense to me.

I wish you all the best!

[Teneal_]

Hi I am sorry to hear about everything you are going through. My boyfriend had BM in February and he is still suffering drom headaches, depression etc. When he explains what he feels like he also describes it as a bad hangover bit a billion times worse.

What I have experienced is that it is quite common but I do believe that seeing a doctor and talking to qualified people about this is important.

Look after yourself and well done for being so brave and overcoming this illness.

Best of luck to you

Love Teneal

[Rener989]

Well for Me and I'm just now 6 weeks into recovery. I'm clueless to what to expect. I had prior excruitiating nerve pain in pelvic. After I had lowered my gabapentin it was a lot better. I also have severe chronic back pain with a full all metal on meta disc in my L-4,5. So it hadn't been so bad because pelvic painjust that painfu!! I got BM was sedated for 12 days. No idea what was going on and then 5 more days in Hospital plus week in Nursing Home. I didn't know why I just couldn't seem to recover. The Fatigue is unreal. Can't sleep at night though. No appetite. Sooo many changes. Anyway so pelvic pain with stabbing pins and needles plus now I can't stand for more than 10 minutes without My back locking up. The lower back and stiff neck plus headaches. Does this get better or is this going to be My new Me? I have a new Primary I'm seeing next week. Bad advice from current one got Me BM and I'm not going to see him anymore! Any help or advice is appreciated