Bacterial Meningitis: This is all new to me... - Meningitis Now

Meningitis Now

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Bacterial Meningitis

DChoquet profile image
8 Replies

This is all new to me and not sure what to expect. I have read about young and read about older, but is there anyone around 30ish and prior to this healthy, that has gone through or is going through recovery for bacterial meningitis that can share his or her experience?

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DChoquet profile image
DChoquet
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ignoreit profile image
ignoreit

Yes, I was 33 and healthy when I contracted Meningococcal & Septicemia and developed complications of DIC. Most of all I remember the EXTREME pain in my legs & feet which prompted me to call an ambulance. I've written a lot on this website about my experience AND my after effects through the years. You may want to read my posts....

DChoquet profile image
DChoquet in reply to ignoreit

Yes, I would, how can I find them?

ignoreit profile image
ignoreit in reply to DChoquet

Hi DChoquet,

I'm sooooooo NON tech-savvy. I stayed up until 3am last night looking for the way to read ALL my previous posts...to make sure they are still valid. They are. However, I don't remember how I finally...using trial & error...found them...all of them together. They're all under "ignoreit". (ignore it).

haylee86 profile image
haylee86

meningitisnow.org/support-u...

I was in my early 30s when 6 years ago I got BM. I was healthy and robust if not especially fit - I worked as a front line police officer. I woke up in the morning with what I thought was a very bad migraine (which I suffer from), by the time my wife came home at 5 pm I was crying out in pain. She called the GP who came out, on seeing me the GP called an ambulance. I don't really remember much from the morning when I went back to bed until after I had been in hospital for several hours. I do recall vomiting repeatedly through the day due to the pain in my head. I spent a week in hospital - mostly dozing in an angled bed and with a lot of pain relief.

Coming home I felt horrendous and realised how incapacitated I was - I felt unable to do anything, and with the reduced pain relief I felt desperate. I felt exhausted but I found lying down increased the pain in my head to a nearly unbearable point. I took a lot of prescription pain medication and began to suffer quite badly when I wasn't taking it. I slept propped up at an angle and used a white noise maker to try and cancel out the really bad tinnitus. At its worst I became obsessed with the idea of suicide to prevent me being such a burden to my family - at its best I felt occasional moments of total serenity - I think in retrospect because I had to let everything go.

After 2 weeks I returned to work as a police officer on shift. I wasn't remotely ready but because of some changes at work I drove myself to go back (I think I was also trying desperately to prove to myself that I wasn't broken - which I was I just couldn't accept it). It was a huge mistake and I think it set back my recovery significantly. The force doctor declined to let me do full hours and I did about half length shifts - but even this was too much. I would be drenched in cold sweat with exertion by the end of 5 hours at work, and at home I was so exhausted I felt unable to do anything. this put huge pressure and strain on my wife and our family. I was taking ever more prescription pain relief and it all came to a head and I broke down at work. I returned to the GP and she used amitriptyline to wean me off the pain killers. This was a big hit initially but began the process of getting better.

I found it virtually impossible to get any useful information on recovery rates etc. and in desperation rang the helpline of the charity that is now Meningitis Now - the nurses I spoke to did more than anyone to calm me and their reassurance over the long timescale for recovery was very helpful - knowing it will take year to feel better is an awful prospect but helped me accept why I didn't then already feel improved. They also were adamant I should go for a hearing test - which the hospital and GP never suggested or mentioned. This was very worthwhile as my hearing had been significantly damaged and I was issued with hearing aids which help me a lot.

I think it took me at least 6 months to get back to a state where I could just about get by as a husband / father / employee - and over 18 months until I felt I had regained my mojo and was as 'better' as I was going to get.

6 years on I am still different - but in some respects stronger than I was before getting BM.

My experience is that recovery can be physically and emotionally brutal at times but I have now regained a full and happy life and I am very grateful for this and know that many are not so fortunate.

I wish that in the immediate aftermath of BM I could have met and spoken with someone who had been through it. I think these boards are a wonderful way of achieving something close to that. I live in the SW of the UK and if you are down this way at any time I would be happy to meet up.

Jos

in reply to

Quite agree. There needs to be lots of support in the early stages of coming home and regular checks by someone who can answer your questions and offer reassurance. There should also be a warning that BM can take years, not months, to fully recover from and I am amazed you were back at work so soon- I was a zombie with no memory for many months and would have been no use to anyone. Yes, we become different people after this horrendous disease but just need to make friends with the new person and count our blessings that we survived. Good luck to you

DChoquet profile image
DChoquet

So, glad that you are feeling better. The migraines have subsided then?

Thank you. Yes - I get them periodically the triggers seem to be: as an addition to a hangover, in response to relief from a stressful situation (after a job interview say), sleep disturbance (shift work or long aeroplane flights), and sustained high levels of physical exertion (a heavy days skiing). I take 2 or 3 amitriptyline tablets (I am prescribed the 10 mg tablets) to combat a migraine when I feel one starting, or to pre-empt it if I think the circumstances will lead to one. If I am already having a migraine my stomach seems to stop working so I also take 2 pink Migraleve (available over the counter - the yellow ones do nothing for me) as they have something in them which gets the stomach working and means the amitriptyline can do its work. It took me a long time and a lot of trial and error with various migraine meds to get to this solution but it does work well for me - and the effects are quite rapid (I'll feel significantly better and able to function within 30 - 60 minutes). My GP was sceptical of using the amitriptyline in this way and was happy to prescribe it for everyday use at 10mg, but I don't need to take it everyday (it has some side effects which I didn't want from taking it everyday) and he supports me in using it this way as it has proven so effective for me.

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