I had meningococcal meningitis in Nov last year and since Ive had terrible insomnia and restless leg syndrome. Its been getting increasingly worse and the last week I am struggling to sleep at all.
Has anyone else suffered this, whats helped?? Please tell me something has.
I had viral meningitis some years ago but after the initial recovery period (about two years) I started to suffer from insomnia related to the Mollaret's attacks I also started having. The one thing I found help (apart from things like Nytol) is the Paul McKenna hypnosis CD 'I can make you sleep' which I think is also downloadable from Amazon but if not the book/CD package is available.
This re-programmes your brain to help you sleep better and worked (and still does when the insomnia comes back) for me although you can't use it if you have epilepsy apparently. I found that I could take something to help me sleep like Nytol for the recommended duration and then the insomnia would come back so the pattern needed to be broken and the hypnosis did it. You listen to it when you go to bed and invariably I'm asleep before it finishes and only then wake up either when it's morning or to take the headphones out (but even then I've been too zonked to do that sometimes!).
Hope this helps, J.
Hello, I recovered from meningitis in 2008 and have experienced insomnia on and off ever since. Something strange is going on with my legs but as yet not sure what it is!
With regards insomnia though, I went to a sleep clinic run by my hospital at the time which essentially taught me good 'sleep hygiene'. Essentially this means establishing a consistent bedtime routine, not sleeping during the daytime however knackered you feel, not napping anywhere other than the bedroom.
I was told lying awake in bed at night, gets your body into the bad habit of associating bed with being awake. I was told to get up and make myself a glass of hot milk and then return to bed when feeling sleepy again!
These tips got me back in the routine within 2-3 weeks.
Since then, if I have any problems I always take a drowsy antihistamine, and if really bad, I have a bottle of Night Nurse, which would sedate an elephant with a small sip!
Good luck and hope it improved
I am with you Emz with the problems of imsomnia. I have had a dire sleep ability since I had BM&S in 2011. I have always followed a good go to bed routine and get up time but I don't seem to be able to go into that good REM sleep anymore. Consequently I nap for about an hour and then wake for sometime and that seems to carry on throughout the night. I was given some sleeping tabs by the GP for a couple of weeks but even they didn't stop the frequent waking and being awake from about 3 a.m. Onwards. My GP has now decided that the meningitis damaged my sleep centre in my brain.
Sorry but I can't say anything about restless leg probs as don't fortunately have it!
Best wishes
I have a pretty good sleep routine and getting to sleep isn't really a problem its staying asleep that is.
I have used the Paul McKenna hypnosis on youtube which helped a bit.
Thank you.
Hello, I had meningococcal meningitis 6 years ago and have had restless leg syndrome ever since. It is always worse in bed at night. I don't always realise I am doing it until my husband mentions it. I have been quite anxious since meningitis and worry when I can't remember things so that makes it worse. It all seems a vicious circle. I did have some wonderful counselling from Headway but I need to try and use more of the tactics they suggested. I hope you have some relief soon.
Best Wishes Claire Way
Hi I have the same problem,insomnia and restless leg syndrome. There's times where I don't sleep at all. When it's time for bed my legs get worse and keeps me awake,then I'm tired during the day. I try not to nap hoping that maybe I'll get some rest. When I don't sleep I get irritable and get angry. Every once in awhile my body just shuts down. Ever since I was little I have to have the tv on when trying to sleep. I tried turning it off but it makes it worse. They offered me a sleep study and I refused due to the fact I couldn't watch tv or have my own pillow. Thanks in regards
emzg shannondawn im the same
I had it terribley in hospital and it drove me mad id take my stockings off and get told off haha
Now at home i still get it and also got it before i was ill
What i find is obvs if your out you dont notice but if your lounging at home even if you have friends around theres a certain point if i dont take off my socks and if i dont change my trousers to a dress skirt nightie or shorts it drives me mad so i assume its to do with maybe not doing enough/sitting to long maybe
So i take things off and sometimes maybe hot baths help or excercising 
Wow. I thought sleep would get better not worse. I got bacterial meningitis 6 months ago. And I have insomnia. I heard the brain is very tense and stressed because of the bacterial meningitis shocking the body and brain and will take a year or two to calm down. So I do whatever it takes. I cycle things so as to not get addicted. Ambien,weed,tamazapam,trazodone,seroquel,and natural stuff to.
I had viral meningitis 18 months ago and my rls got worse I have it in my back as well. Then in July of this year I got it again and they diagnosed me with a rare form of meningitis called Mollaretes. It is so bad now that the prescription medication I was taking for it along with muscle relaxers won't even touch it. I have no idea what to do. I am so tired of being tired and this feeling. If someone hasn't had it , you can't explain it to them.
I hope you find some relief. My gp is having me have another appointment with her next week and finding an neurologist and infectious disease dr that accepts my insurance, I'm hoping one can help. If they find anything out I will let you know. I hope you are well.
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