Viral Meningitis - My experience

[LisaT]

Im contracted Viral Meningitus in July 2011. Im 40 aand have two young kids, I was fairly active and felt totally fine, then after a night out ( drank 3 glasses of wine ) I woke up with what i can only describe as the worst headache of my life, at first I thought I must have drank bad wine but soon after I started to vomit, the pain was so bad I didnt want to move and just layed still, the light hurt my eye and I was shaking with coldness although I had a temperature. After numerous calls to NHS direct by my husband, we where told to get to A and E, I was given some pain killers when I arrived and we waited 5 hours, I cant remember much about the wait as I felt totally out of it, we saw a doctor who said he was 95% sure it was nothing but theres a small chance it could be meningitus so they can do a lumbar puncture but that can be nasty and I would be in hospital for a week. He made me feel like I was wasting his time and part of me wanted to believe I would be fine in the morning and ready to go back to work in a couple of days...so we went home, I just wanted to get back to laying still again. I saw the GP the next day who diagnosed it as Viral Meningitus. My biggest regret was not having the lumbar puncture as for weeks and months I was convinced I had something else wrong with me as my doctor told me id be ok after a few weeks. I spent about a month in bed, for about three months I had pain mosts days, in my head, neck and spine I was fatigued, depressed, had terrible nightmares, panic attacks, I couldn't finish sentences sometimes ( memory loss ) or concentrate, my joints ached. I had sensitivity to heat and light and high noise levels where intolerable ( hard to avoid with young kids ).

Luckily I discovered the Meningitus Trust early on in my journey and they have been the best support for me. At times I thought I was going nuts with a lot of negative thoughts in my head, Id never experienced an illness before longer than a few days so weeks and months went by and I found that really hard to deal with especially as I was such an active person beforehand with a busy life working full time with a young family. I learnt that the recovery would consist of days feeling almost normal and the bad days covering all the above symptons. This was hard to deal with emotionally as after a few good days I thought I was getting better than bang Id be on a bad stretch again. The Meningitus Trust have always offered a friendly voice at the end of the phone through there support line, I called them when I was at my lowest and they really helped me, I will always be thankful to them for that, I also met another sufferer through the one and one service and talking to someone who had been through it all was the best help.

I have since had a CT scan and seen a neuroligist ( I had to wait 4 months for the appointment ) she wasnt very helpful and said there isnt after effects from Meningitus which really upset me as I know thats not true, Im currently waiting for an MRI as I still suffer with awful headaches and extreme tiredness as well as Imsonia and feel a dull ache in my head most days.

Ive tryed numerous alternative therapies ( I had some covered on medical insurance ) Cranial Osteo ( This gave me pain afterwards but I think has played a part on my good periods being longer ), Acupunture ( This helped my energy levels the most ), Massages. ( This has helped my sleep and tension and pain in the neck )

Six months later the good days are now outweighing the bad days, Ive learnt to accept that it will take time and I cant control or fight the recovery. I now meditate every day as it helps me calm down and focus on one day at a time. I have 'wobbles' where its all just too much and I feel really down but when I look back Im definately dealing with it all a lot better. I keep notes on how my weeeks are so I can see how they are improving and see if theres any patterns to help manage the after effects. I cant drink alcohol of caffeine anymore as this gives me an instant headache.

I found walking or a light cycle ride really helped me cope with the depression and anxiety but Id often need to rest all afternoon afterwards I started to do this after about 3 months and have built it up to longer walks now.

Im about to go back to work next month.

I realize I am lucky compared to some, the best advice I got was just focus on one day at a time and listen to what your body is telling you, dont feel guilty if you have to rest..as rest is king especially in the early days.

Having Meningitus has taught me to appreciate life a lot more, Ive had precious time with my family and feel we are a lot closer because of it, Ive met people in my village where before I was too busy commuting to get to know anyone I was working too hard before and hopefully will work out a better balanced life as a result of getting it !

[Polly123]

Hi Lisa, I think you have a great approach and attitude towards your recovery. I has viral Meningitis in October 2006 and didn't go to hospital until 6 days after contracting it. I thought I had a migraine, and my doctors thought I had flu, Although once I arrived at the EAU unit , the medical care I received was superb. It can take up to 7 years to fully recover [ if at all ] and yes you read that right.!!!! This year has been a huge leap forward as far as my memory and motivation goes, I feel as if I have made great progress and I'm even considering starting up my own business. I still have mood swings and a sensitivity to noise and light. I think it is both outrageous and completely untrue for someone to tell you that there are no after effects of viral Meningitis, as there clearly are. I believe that this attitude comes from a lack of knowledge within the medical profession, as most studies seem to concentrate on Bacterial Meningitis. Have you considered bereavement counselling ? , as you are clearly still mourning your baby girl. I hope you feel better soon, get some help and enjoy your little girl. Just remember it just takes time, so don't be too hard on yourself. Good luck Lisa....Polly

[LisaT]

Hi polly,

Thanks for your comment and words of support, setting up your own business sounds really exciting and I'm so glad to hear this last year has been better for you. You added a note about a baby girl and I think that may be meant for the other comment ' help' posted about the same time.

Good luck with it all

[Tiga]

Hello Polly, everything that you are going threw is normal, been there done that LOL re lumbar puncture it took, 4 doctor, two days and 12 lumbar puncture , they had not got a clue what they where doing, and yes I had the feeling every day with every doc, I was wasting their time, the dark period I call it, will pass darling, trust me on this and you will gain thoughts back again, think of a computer and it has to re boot, it is the same for you. I went on high dose of Vic C, and Zinc, when I felt my dark time coming I would play music to lift my spirit. it has been 8 months, and I still have mind blocks, but now I laugh to people saying I am having a meningitis moment, be honest and tell people, never hide it, as they get very confused

when you go back to work, be honest and say thou there are no scars to be seen, they are inside, and you are a little scared, when you are going to the dark side let people know, they will understand

fatigued, that is normal, but a good diet will bring that back, just do not push, when you are tired take a 20 min break, then get up again

depressed, this is also normal we both had something attack us, and that is how you must see it, we where hit from no where, and it took our soul but like all attacks, only we can fight back, an darling you will

nightmares, try going to bed with lavender, to help you rest

panic attacks, when you feel this come on, breath slowly into a brown paper bag, run cold water under your writs, and say the alphabet slowly, this will help with your breathing, I used to get them allot, until someone told me you can die from them, and thats what I think when I get one.

I hope any of this helps you, but honey what you are going threw is normal, talk to someone, or write your fears down, like the boogie man once you face it, it does go away. x x x MAndy

[becgaf in reply to Tiga]

hi, i was six months pregnant when i contracted meningitis, i had 11 lumbar puncture and 4 or 5 docs, none of them knew how to do it, it was awful, plus i couldnt curl up enough because of being pregnant, i ended up being in hospital for 10 days as after they diagnosed the meningitis they thought i had a brain bleed too, fortunately i didnt but it took some time to get the results..isnt it strange how we all feel that we are posing a problem to the docs?? and that they still dont recongise the signs of this disease?, i had blood results showing viral and spinal fluid showing bacterial so was hit with 9 days of iv antibiotics and worried terribly about the effect that it would have on my baby girl, not one obstetric consultant came near me in that time and my baby stopped moving (since believe though the amount of painkillers i was on), eventually after 5 days they sent a midwife to let me hear her heartbeat.. this was nearly 4 years ago and its a living nightmare in my life all the time, short term memory is appalling, panic attacks, depression, confusion, speech problems - i think your comments above are very helpful, thanks

[LisaT]

Hi Mandy ( tiga )

Thanks for your lovely words of encouragement and advice, it really helps, I like the idea of explaining to people ..the meningitus moments ! I noticed you said you where having a scan around the dull ache, I also have a dull ache on my left side and waiting for an MRI in a few weeks, I hope you don't mind me asking but did anything come of it ?

Thanks again Lisa

[Tiga in reply to LisaT]

Hi Lisa, they said there was nothing there, went back to my doc, and he said it was part of the meng..... and will go in a while, LOL means 6 plus months, ha ha, but i have got used to it, i see it as part of me know, like a little squarell living there, all i need to know that it will not kill me LOL. some days i notice it others i do not care LOL x x x x

[janjan69]

Exactly same as me i had the desease 5 years ago and still have tinted glasses for the light and really bad headaches and have nerve damage so u are very right it can last a long time my gp say some things mite never get better i really hope he wrong good luck hun xx

[lmeale]

Hope you get treated better than i have been !!! The HR manager where i work just keeps giving me hassle as i have time off ill due to being left with a low immune system !!!! I seem to get all the bugs and illnesses going and need time off !! And just today received yet another guidance for having 2 days off with a virus !!! Being sick for 24 hrs none stop not good !!! hope you get on ok xxx I had it in may 2003 !!!

[Parent]

Hi, My daughter woke up one Monday monrning in 2009 with a terrible headache, she couldn't open her eyes and could hardly move. I gave her some paracetamols and told her to take some ibupufen if they didn't work, she was nobetter by the end of the day so we took her to the Drs. They said its a migraine and gave her tablets. She was walking slowly around with sunglasses on as she couldn't stand the birght light. On the Firday night she said I don't feel well Mum, then she started turning blue at the mouth, her arms went floppy and her eyes were rolling. We called 999 and she was admitted to hospital. Her blood pressure was very low and she was very unwell. Tests were done and the mention of meningits made. She spent 3 weeks in hospital having tests, given paracetamol and came out unable to walk far, in fact she had to have a wheelchair. The diagnosis...unclear probably a virus...funny things these viruses!!! Yes aren't they!! She spent another week in hospital three weeks later were she came out with same answer. She is now at University and fighting all the time with the after effects. The lack of concentration, the fatigue, the memory loss, mood swings, nightmares, depression, slurry speech when tired, she has gone through all these and still suffers sometimes, but she hasn't given up. We are so proud of her. Looking back I feel that we could and should have said more, but at the time you think the professionals know best don't you....obviously we were wrong. Numerous outpatients visits for various things to do with her heart, head etc and only now through doing more research do I realise that she was totally affected by Viral Meningitis. It is can be an uphill struggle for her and for us as a family, but the good days are outnumbering the bad now and she as well as us have learnt to adapt and live with the after effects. I agree people don't believe you when you say viral meningitis, as they expect a person to be covered in a rash and desperately ill, in which case more needs to be done to publise Viral Meningitis so it is a more recognised illness. Good luck everyone on their recovery!!

[teddyeddy]

I had Aseptic meningitis, they think after an IVIG. I suffer with I.T.P and as a result had an ivig, can honestly say one of the darkest times of my life. What I am uplifted to hear is that the side effects I have, are not in my head, I am not going mad and they are a real factor of meningitis. It is a relief to realise that there are others out there, that are going through the same thing and can understand. Thankyou everybody for taking the time to submit your answwrs and experiances.