Hi Guys, I am a 54 year old male and have had Meningitis twice in 3 months End of May and last week of August. I was in hospital 8 days with both and this time they did a lot more tests but are still basically clueless as to what caused it, hoping that is kind of good news but still fear for it coming back. Have the usual headaches since coming out of hospital and the queasyness is still there from time to time but am a lot sharper mentally than I was when I came out of hospital in early june. Also physically I am able to do things better, I was walking pretty slowly for 3 months after the May episode but now striding out almost like I used to, so am trying to take the positive out of that. I just find it so very scary, I had Viral Meningitis when I was 18 as well so I thought I had done my bit so to speak. There just seems such a lack of knowledge from the Doctors as to this disease and very few offer any constructive advice. Thankfully at least I get some support from the meningitis trust, they really are great. Its hard not being a chore on the family as they must be sick to death of me being ill for the last 3 months and no real end in sight, I feel as if I am always moaning about this pain and that queasyness and this ache and is it coming back do you think, try to not do it but must admit I am.
Any advice anyone has or ways to deal with the repeating type situation I would love to hear it, hopefully only positive stuff as I am low enough I think without doom and gloom and I don't mean that rudely.
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KEEFY
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Thanks tweetypie, to have someone out there pulling for me is great, been pretty scary, i had a good day yesterday, don't know if it was the adrenalin of putting the blog up but I am up early again today and going to go for a small walk and watch some sport, too old to play it but never too old to watch it. I will keep my grin as long as I can and hopefully for ever. I have read your story please keep going, you are in all our thoughts I would hope and certainly you have one extra pulling for your complete recovery. Take care xx
Hi, it might be worth seeing your GP with a view to having a diagnosis for Mollaret's Meningitis which is where the illness recurs on a regular basis. I was diagnosed with last year and it did make things click into place and allowed me to try and identify triggers for the attacks (tiredness, stress and caffeine). It is rare and generally follows an attack of VM and you might need to nag the crap out of your GP to take you seriously to get a referral but it might be worth doing. It isn't necessarily a life limiter as I completed a half ironman triathlon three weeks ago without suffering an attack afterwards so there is hope.
Thanks Jonad, it was something I was thinking about and had mentioned to them but as you say they dont really say much when you mention Mollarets, Docs have been pretty bad to be honest, still good to know you are doing well, how many attacks did you have before they diagnosed it. Unfortunately my work life is about as stressed as it can be and I have always been a worrier so if they are the triggers, I am in a bit of trouble. Lack of knowledge by docs is a real problem I guess, I am staying positive as you say and your story is an inspiration. I would be interested to know more about it if you get time to add anything, thanks again and good luck to you
No worries, the attacks didn't start recurring until about 2 years after the initial attack but this is by no means indicative so I'm told. I was getting two or three in as many months on a regular basis which was really frustrating.
No one really knows what triggers the intial attack nor what continues to cause them and because it is so rare there's not likely to be any research either but my a process of elimination I think I have found what does it for me.
If you read my blog posts you'll see that ignorance of VM amongst GP's is pretty endemic. Mine told me that I was malingering because I wasn't back to work after two weeks. In the end I confronted him and plainly asked him how many cases of VM he had actually treated and after a bit (well a lot to be honest) of waffle he finally admitted he hadn't treated anyone but 'meningitis is all the same', In desperation I took the MT leaflet in to him and he finally had to admit he really didn't know much about it. Persistence is the key I'm afraid.
You will need to ask them for a referral to a neurologist then use the NHS Choose and Book service to find one, Google the various options and see if any of them specifically mention either VM or less likely Mollaret's, it's worth a go.
The thing with the stress and worry is that you have two choices. You either continue as you are and continue to suffer attacks or try and work around them. I found the Paul McKenna relaxation book and CD worked really well for the stress and try to change the way you think with worrying. You can control it, I know as i was a terminal worrier. The hardest thing I found was adapting to what 'normal' means to me, trying to carry on as I did before was a recipe for disaster. The only reason I have been able to do things I have was because I changed the way I live to accommodate the symptoms and find a way to work around them.
If you want to message me directly I'm happy to share my email address with you if this would help you get through the next few months. Hang in there, the first few weeks and months are the worst and I have had ten years since my first attack so I think I can speak with some knowledge on the subject albeit it is only my experience.
Thanks Jonad thats a big help to see what you say, I will try and work out how to message and will send you my email address, its a strange one so may drop in your spam box as it seems to with a lot of people the first time, its to do with boxing to give you a idea when you see it.
Assuming I can work it out, I dont feel so alone now thanks for that.
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