I have heard you can have after-effects if ... - Meningitis Now
I have heard you can have after-effects if you have contracted meningitis. Please can you give me some information?
Hi Lizzie
Whilst most people who contract meningitis will make a good recovery from the disease, it is estimated that up to 15% of people will be left with some kind of severe after-effect such as brain damage, sight and hearing loss or, where septicaemia has occured, loss of limbs and scarring.
Many survivors will be left with invisible, but life changing, after effects such as memory loss, tiredness, emotional and behavioural problems, depression and severe headaches.
Some of these after-effects can be short-term, but some can also last a lifetime.
If you would like more information on potential after-effects, then please visit the Meningitis Trust's website on meningitis-trust.org or contact our 24hr Freephone Helpline on 0800 028 18 28 for further information.
I hope that helps.
Anne Currie
UK Community Development Manager, Meningitis Trust
it depends what side effects, medical or emotions, from my point a view only, I had viral meningitis, my side affects where very much, felt alone, sacred to go out just in case I got it again, fear of been with people, thou allot of my emotions where due to very poor service at the hospital and the ill treatment I had, but apart from that, I had mood swings, from anger to crying allot, again I think the anger came from the miss treatment I had while in hospital.
I am having a MIR in Aug, as I have a dull feeling in the side of my head, but I shall not take it for granted that was from the viral meningitis.
If you a have any fear, please just go to your doctor, my where outstanding, from the advise they gave me how to handle the miss treatment I got, to why my emotions where all over the place.
If you have had it, all I can say is, you may feel a little off, have fear, and fear it self can sacred you, go straight to the meningitis web site, read all their articles, it was a life saver for me, as I was reading it I kept thinking yes that me, yes thats how I feel.
If you worried please do not keep it to your self, talk to doctor, they will help you
I'm currently recovering from viral meningitis,
It has been a long process with after effects ranging from intense headaches, joint pain, disorientation, nausea, hallucinatory periods, tiredness, mood swings and lack of concentration.
I'm pleased to say that all of these after effects are now subsiding gradually. The recovery process was a lot longer and more intense than I was expecting, and I would definitely have benefited from knowing about Meningitis Trust as soon as I left hospital.
Happy to chat more about this, as I found it hard to find information on recovery when I needed it, and the more openly it is discussed the better prepared sufferers will be when dealing with their own recovery.
When I was discharged for hospital after having Viral Meningitis and Encephalitis, I was under the impression that I would probably feel a bit rubbish for a week or so and that would be it. That was nine months ago and I am still not feeling myself, although things have improved. At first I woke every morning with a splitting headache. I found it impossible to function with day to day tasks as I was so exhausted. I had a sort of ‘word disability’ I couldn’t get out what I wanted to say and having a conversation was difficult. Noise was a big issue to, I would get pain with a load noise but it was as if someone had turned the background noise up and I would get so stressed out. I was also left with tinnitus with didn’t help especially when trying to sleep. I am not sure whether things have improved or I have started to just except that I am not the same person. I still sleep for about 10 hours a night and wake up tired. By late afternoon I have just had it. The headaches are not a frequent now and I sometimes have days where I don’t need any pain medication. My hearing is still affected and some days if feels like I am in a bubble. I just wish I had been give some accurate information on discharge because in the early days I just didn’t understand what was wrong with me. Things would have been so different had I found the Trust earlier.
hi roxy, sleeping 10 I knwo this sounds mad, but it is not healthy for you, you will wake up tired, try and cut to 8 hours if you can.
I am was glad I found this trust when I got out, it stopped me thinking iw as going mad, yes the extra loud noise drove me mad, I thought I left the hospital with super powers, as I could hear everything, and not a good thing. I still have little gaps in my memory, I think of my nervous re growing, so will take time to all get together LOL. Discharge, what a joke, my hospital, was a nightmare, every nurse that came on shift kept asking me why I had sun glasses on, this was due to been put in a room with no curtain, now I know how a vampire feels LOL. I am glad you are getting better, as we are not alone ( lol sounds like X files, but I think it is a X-File illness LOL)
Tiga
i had meningitis 4 years ago and have difficulty adjusting to the after effects - the headaches have continued and loss of hearing in one ear - completely know how you feel with the bubble sensation and its very irritating, i cant concentrate, memory loss is awful, and thinking about it but never admitting until now mood swings, i too am emotional and could dry and feel quite paranoid at times...the hospital didnt tell me anything in fact they were pretty awful and it was one of the worse times of my life...i cant sleep properly so feel tired, sometimes my head feels like its going to expolde like it did when i first got ill. and i also suffer with the word thing - where i cant form a word that i want to use...my docs have been good but really i am not sure they know much about it - i would just like to know hoe long it will last ...hope you get some peace soon...
Hi,
I had Meningio-Encephalitis in Aug 2011 and was rushed into hospital, where I remained in isolation for 12 days - I was very ill and I still suffer from side-effects.
What does interest me is why very little is ever written about the devasting effect Meningitis has on our immune systems?
Meningitis strips our immune sytems and leaves us wide open to all sorts of infections.
Just ten weeks after leaving hospital, I came down with a virulent chest infection which, when four separate courses of anti-biotics made no impression on it, was diagnosed as Chronic Bronchitis. I had a broncoscopy that diagnosed I had a condition called Bronchiectasis.
I remained in hospital for eight days, where I was put on 'heavy-duty' IV's and many other drugs in order to stabilise my Bronchiectasis condition.
Fourteen weeks later, I was rushed back into hospital with Acute Pneumonia - this time I was in isolation for only five days, thankfully.
Finally, in September 2012, I came down with a severe Upper Respiratory Chest Infection and this was 'the final straw (virus) that broke the camel's back'. I'm still getting over the knock-on effects.
I've become someone that I barely recognise these days: I've no motivation, no energy, little social contact. I don't go out much anymore, as I'm frightened I may get another illness - no surprise really, given my history over the past seventeen months.
I also have Tinnitus although this is getting less noisy!
So, without further ado, back to my original question:
'Why is so little written about the effects on the immune system after Meningitis?'
I've had to do all my own research and draw on good ol' Common Sense. Google has been a great help especially, finding The Meningitis Trust for me, as the hospital were less than useless providing any information or after-care information - why?!
Anyway, I'm incredibly grateful to my GP who has been so understanding and approachable, which is a rare thing to find in a lot of GP's nowadays - he's an excellent listener and diagnostician.
Looking forward to anyone's responses. Stay warm and safe, and thanks for reading this far.
after effects such as memory loss, tiredness, emotional and behavioural problems, depression etc, yes we all seem to have them, but I feel that fear is also a big part, by talking to others, it seems to help if you drink water stop coffee and tea only till you feel better) this cuts the head aches down, also with me fear bought in depression... right from the start I told everyone around me I maybe moody and emotional not right, this took pressure of me, be open and honest, tell people, every one heard of meng.... but not the after affects,. if we was left with a great big bruise on our face people would understand, we would understand, but like many things in life if not seen, not worry about, as the illness as gone, we are left in shock, like c ar crash we re live it, think would could have been, this is fear, after shock, how ever you want to look at it, for the 1st week I was scared to touch anything just in case it came back, I thought I was going mad, but now I know I am not, it is a AFTER SHOCK affect, by knowing this the fear will go, please talk to some one, hell I used facebook to explain what is going on, I have a mir next month, as something is not still not right, but on face book I just put "going for MIR so they can find my bean" I am letting people know, ok in a funny way, but it helps take my fear away, you can be honest and tell people or make joke, either way you are been honest and fear hates that, good luck everyone, you are not alone!!!!!!!!!!!!!!!!!
I admire your positive attitude,keep it up, it is a blessing for those who read you, yes fear is a put down while you and all others need even more courage, support,hope and faith that everything will be and will be ok. you are part of your own recovery, i mean yr mental, emotional attitude, on meningitis and everything else in life. My son had b.meningitis and I am here in this site to learn from others, you all and support you as I can.Today he is completely recovered ,off medication too! I hope to hv given you some courage and hope especially to the ones who really feel down and depressed and read this site
I was discharged from hospital on the 15th October 2010 following Pneumococcal Meningitis Spinal Shingles and Viral Encephalitis - to say I was like a space cadet is very mild. No post information was given to me just that I would feel tired for a while and it could take up to a year for a full recovery.
I had no idea what was going on - I couldnt understand simple instructions, I couldnt compose sentences, I was constantly tired, nauseated, I ached all over and noise and lights seemed to distort my balance? By March this year I realised that I just wasnt right and I was unwilling to wait that magical year - in fact I was fed up of people telling me just to give things time I was eventually seen by a Neurologist who confirmed that I had an acquired brain injury I was shocked to hear this but at least I had an answer. My advice is yes there are life changing side effect post Meningitis and the more you search the internet your list will become endless. For me fatigue was the worst because this led my ability to do anything - a phasing programe through physiotherapy put this into prespective - my advice is work out what side effect debilitates you the most - seek advice and support - and dont put your life on hold waiting for that magical year. Try slowly to re-train your brain by introducing the things that are causing you a problem like noise levels it might just be like me you tune your your music / TV systems onto classical tone - that changes the frequency - and for me it now dosent irritate my tinitus as much Reaction lense glasses was another good change - helps eliminate that sharp brightness
Good luck
I contracted Viral Meningitus in July 11, the first three months afterwards where really awful, I really felt like I wanted to take my head off and leave it somewhere else, it felt like Id been hit by a cricket bat in three or four places on my head, my body ached, I was fatigued,I had depression, imsonia, nightmares, panic attacks. I would have the odd day and occasional up to a week pain free but as soon as the pain was back I think it put me into a panic that the meningitis was back again. Its now Jan 12 and I am now having more good days than bad days, I still get a lot of headaches but they are more manageable now, the imsonia is still there but the depression/anxiety is only the odd day now. Ive tried a lot of alternative therapies, acupuncture ( this really helped my energy levels, cranial osteopathy ...this gave me pain after every treatment but the good periods started to extend out and I have taken a course in Mindfulness meditation, this has helped me the most emotional and I now meditate every day, it really helps me calm down and help manage the fear and anxiety. I was lucky as I had medical insurance that covered my alternative therapies but the mindfulness course was through my GP. I am going to return to work next month so its a big step, I know I will have the headaches. The Meningitus trust has been my lifeline, the nurses have really helped me calm down when I was in a total panic and really depressed and the one to one with other meningitus sufferers really helped as your not alone in all this..I had an awful experience seeing a neuroligist who after 4 months told me there is no such things as after effects of meningitus and made me feel like I was mad !! I really hope your recovery dosent take too long, the best advice I can give is to remember that the bad days wont last for ever, take one day at a time and try and bring in some hobbies to help give you some pleasure on the difficult days ( I did some painting ! ) and the meditation really helped me. I have learnt so much about the illness and whats important in life ( I was working way too hard before ) and now having time with my family has made me realize just how important it is to get those priorities right and really enjoy life.
Has anyone had their neurologist say to them that they didn't have meningitis when you've had a medical consultant confirm twice that you have (through lumbar puncture) I had highly elevated protein levels in CSF. Since discharge from hospital I've had endless after effects but feel like no one believes in what I have to say, I have excruciating headaches, memory loss, concentration problems, no sleep but my neurologist has now sent me to a neuropsychologist to see if my problems are psychology related!? My neurologist really doesn't understand what kind of pain I am in on nearly a daily basis, my gp is good & she helps as much as she can but can't give me any answers as to why I've got this endless list of after effects
Is anybody else on tablets for seizures after meningitis. Iv not had any but have been told i need to take the medication indefinitely. 
