Jean viral meningitis

I had viral meningitis last year at this time.I previously suffered from migrains which I thought I was having a bad attack.i am a year on and I feel worse than ever.I have chronic headaches 24/7 diffrent to what I have suffered with Migrains.I have terrible fatigue and my body aches right down to my feet.I have always been a very active in fact to active person.I was sent home from hospital and within a week I was back in.My blood presure was 240/130 my head was bursting.The neurologist prescribed me with pegabalin 150mg and Duloxeine 60mg.I never felt good on this and started to feel strange and pains in my legs so they reduced the dose and I did not feel any better .Every time I got intouch with the neurologist he wanted me to double the dose again which I never did.I have just felt worse and worse as I am coming of the tablets as I feel they were not right for me .I am suffering the withdrawals of the medication and the meningitis I am in a mess.The doctor just wants to pass you on they don't care.I have had to go private as I was left high and dry it's terrible how you feel abandoned.I am just waiting on some results coming back then further investigations to get to the bottom of how I feel.I feel sorry for people that just except what the doctors say I always question them as I have had rough dealing before .My daughter was ill at 7months old and the doctor did not diagnose her with menicoccol meningitis till she ebpnded up in a fit.She was not to live the night but she did survive thank god but we have to live a life time of her being deaf and the doctor just walks away because he did not diagnose the meningitis 2Days earlier she probably would not be deaf.Why should people suffer like us just because doctors can't do there job right .

23 Replies

  • I can not believe there is so many people with severe syptom after having meningitis and most of the doctors don't recognise this.this is really bad and people should be up in arms at this. You see I think the doctors take the easy way out all the time and if there is something quite complicated there not interested as its to hard for them to bother.there will be a small minority that do care but that's not good enough .

  • I am so sorry to hear of your experience. In the US we too deal with a lot of medical advice which may be inappropriate. I have worked in the hospital administration several years and have learned, there are many law suits here because the doctors don't listen to their patients.

    I first had Meningitis in 1994 and your frustrations.

  • Hiya Sopie did you recover fully from meningitis. Yes they do right taking them to court they should be accountable for there tell you the truth I am sick of doctor not being able to do there job right.this is not just the nhs its in the private sector as well.I am just sorry I have ended up having meningitis and I am left high and dry with no help .I am at the moment having to go private and just hoping I can trust this doctor .If you have any information that would he,p I would appreciate it.Thankyou for your reply.

    Jean viral meningitis

  • I learned to research meningitis and actually print off the literature and take to them. I have had about 17 hospitalizations and every time I hear ( I never seen this many repeated episodes. I cannot fake the WBC being high, or the protein elevated counts in my spinal fluid, anymore than I can fake the pain these episodes caused. My advice, take care of you. Get plenty of rest, and never take ibprofin meds, as literatures it can trigger meningitis. I had doctors for years prescribing that med for my headaches, neck aches, and back pain only to learn what they telling me to do was probably inducing additional episodes. Rest, rest, and more rest is your key. The doctors cannot see the virus and tend to down play the signifance. I believe post as this might help you realize you are not alone . I actually printed off some of these post, and I take copies of my medical records with me when I need to see a doctor. There a few more studies today than in 1994 when I first got ill, and I think in time there maybe more appreciation for this diease in time. Some recover well after a illness, but there are a few of us that are the exception. This isn't a one size fits all illness. Just know there are several of us who understand.

  • Hi Thankyou for your post .I was admitted to hospital with severe headaches and pains all over my body yesterday.I had an appointment with a private doctor who I really wanted to see with the hope of him being able to do so thing but I could not get out the door because of how I felt .The doctor in the hospital would not take me on with anything I was saying and I ended up having word with him He did not keep me in and I was sent home with ibuprofen and paracetamol .I am feeling a bit frightened at how I am feeling and no one is listening as the pain never lets up in my head. They are saying I have chronic migrains and they are putting it all down to that even though I did suffer with migrains before the meningitis I never felt like this .I keep telling them this diffrent but but no one is listening .My blood presure was 197 over 105 when they took it .I just feel lost and confused that I can't get help.I hope you are feeling much better take care Jean

  • I had a similar case, my doctor at least did a lumber puncture/spinal tap to see if I had meningitis. Unfortunately it was inconclusive I got sent home from hospital in a worse state and was in bed for a further 5 weeks with all the symptoms. Since coming on to this site I have found out it was definitely viral meningitis but I was sent home from hospital with chronic migraine 😔 they really don't know enough about it or the after affects. I feel your frustration.

    Hope you make a full recovery x Toni

  • Hi Toni thank you for your post I am still struggling to find the help I need.i am going to try bio therapy treatment.I was watching micheal flatly the Irish dancer being interviewed and he was very ill for a year he could not do anything and the doctors could not find out how to treat him so he had this bio treatment so this is where I am.I will try anything and I am really hoping this works as I can't seem to get on with any medication it makes me feel worse.It must have been terrible for you being sent home and you having menigitise it's a disgrace and they get away with did you survive the pain being in bed for 5weeks.i hope you are feeling better or where are you at the moment with this please let me know.i will post how I get on with this bio treatment x Jean viral menigitise

  • Yes that would be great to know how you get on with that. I don't know what it is so I will research later.

    Luckily I have the most wonderful family who looked after me round the clock. I was like you all the drugs they gave either did nothing or caused more health issues. I chose to bin them all and go for holistic approach.

    I have been drinking the aloe Vera gel with msm which is a natural pain killer. Also taking immune building vitamins. Healthy diet and lots of rest. Fustraiting as it is to do nothing most of the time. So out of my charactor. I have also had reflexology and alternate weeks I've had neck and shoulder massage. These have both helped. im sticking with a weekly dose of reflexology for the next four weeks. I have been extra bad this week pain wise. Normaly I've been able to do about 6 hours of feeling Ok but this week for some reason unknown to me I've only been managing about 3 😔. I have fatigue as well. I think from my research 1 year seams to be the minimum recovery if you rest and listen to your body.....roll on the next 10 months. I'm a life's to short kind of girl so I know I have to deal with it and find other things that are less strenuous to do to help myself get over it. I do take 1 pain killer prescribed but I never really know if it's doing anything or not😁😁 I only take it when I really feel the need. I ve decided to look at this with the veiw of you can't fight a broken bone and you wouldn't you would wait for it to heal before you began to use it again. I guess that's what we have to do now wait to heal before we go back to our usual routine.

    It's so good to be able to to talk to people in the same boat. Sad as it is we are all making this slightly more bearable.

    Keep in touch and let me know how that bio treatment goes. Who knows maybe this time next year we will be signing up for our local half marathon 😊😊😜

    Toni x

  • I am sorry to hear you have been worse this week you just sound like myself what you are trying to do to get well. I will keep in touch to let you know if this treatment is any good.I just can't believe how my life has come to a halt with this terrible virus and getting back on track is a mountain to climb.I hope you find a way to get back to normal as well good luck will think about you.jean v.menigitise

  • I my goodness, I am so sorry I did not get on line and see your reply sooner. Please do not take Ibuprofen. there is literature, and many of those posting on this site had cited literature, that show Ibuprofen is very bad for viral meningitis. Again, this just shows how little many doctors know of this disease. I agree, I had migraine headaches before meningitis, and you are so correct the two are completely different. Please take care of you, and realize, that most of the medical communities do not understand. I have decided to print off many of these post and take to my doctor just so he can see, it is not just me, but many like you, saying the same thing I have been saying and no one listening.

  • no Dr said anything to me about not taking Ibuprofen...although I try not to ..its good to know.

    I am one month post VM and think the blackseed oil Ive been taking is the only thing that has helped all of my symptoms

  • I think you might find after reading some of the postings that there are several of us who understand what you are dealing with, and you, many of us have experienced doctors who don't understand this diease.

  • Well they should understand this disease or even try there can't be all these people out there putting it on and having nearly all the same symptoms,Who want to feel like this and try and pretend there is something wrong when there is not .I have not got the time for being poorly.I know some people must fake it I don't understand that but all I know is I need help to get over this abd why should I be made to feel as if I am begging that's when I get my back up with them.Then they don't like that when you have an opinion.thank you for your concern.I hope you are well.Jean

  • Hang in there! I know exactly what you are saying!,,, I sat at a desk working on infectious reports for a hospital with my PICC line and acyclovir IV infusing, as I had no other time off from work, and still I had little to no appreciation for the illness, other than--- well others recover in a couple of weeks-- just don't understand why you aren't -------- I interrupted this to mean/////// you most be exaggerated this condition as it just can't be real. Who knows, what was really meant by their comments, but I know I received little to no compassion in a field I too work in by the coworkers I worked with. I even started believing it must me imaging things and I even questioned my own senses, until I relapsed and ended right back in the hospital as a patient with lab values indicating VM something I couldn't imagen. This occurred to the tune of over 15 hospital admissions and multiple admits to ICU.

  • Hi Sopie I am totally lost with all of this why is it people and doctors don't understand what suffering your going through.I am in a terrible mess with headaches body pain and chronic fatigue.since having this god awful disease and I am nearly having to beg for someone to help don't have to question yourself I don't because I know my own body and this is not me.I am looking for help anywhere .If I find out anything I will post it.I really hope you get help as well keep going till you do.You must rest as much as possible.good luck

    Jean viral meningitis

  • Hi 1251, thanks for your post. It is so good to hear others say (those that have posted on this site), what I have been feeling for years. I cannot imagine why people, doctors, and others cannot accept what we try to tell them. I guess it is a concept, that if they haven't experienced this disease or studied it, it must not exist. Yet we, the few who have had this disease, know it is real. Sadly, as a nurse myself, I have experienced the attitude of other healthcare professionals, as the patient, and as a colleague. I keep my mouth shut and don't discuss VM when I am working as I just cannot handle the looks I get when I try to explain what I have gone through. It could be me falsely believing their reactions, but more than not, I know it their attitude. I have heard in the hospital lounge (or off limits of patient's hearing), doctors and nurses accuse patients of making up symptoms they could not explain, or that they had not studied, so I assume they must be saying the same about me. I would think so many times, this must be what is said about me, when I when I have been ill. In the US so many of the hospitals are self insured for healthcare, and I always fear, if they knew of my previous illness and hospitalizations, and expenses associated with each, if they knew how many times I had been hospitalized, I would be considered a high risk of cost, to their insurance, so I try not let anyone know. I fear loosing insurance and then where would I be. One hospital alone cost over $70,000. Then there was the cost of being off work, the medications and recovery. I have left jobs, knowing I couldn't keep up the pace demanded for the job and also the mental confusion which goes along with the disease during exacerbations or the repeated relapses, it was easier to leave the job than to try and explain, it takes time to recover after each episode. Working in healthcare administration, I have other administration healthcare workers comment, that an employee is a liability to the company due to the care cost, which has confirmed that would be the consideration, I would be given. It has been hard over the years to hide this condition, and know that consideration would not be given to me, to take the time needed to recover, and if there was confusion, there would be no literature to explain it, therefore, I would be considered as deliberately being incompetent, if I forgot a report, or failure to preform to the standard I normally could preform at, when not ill. In a way it has been a living hell. Work hard to not loose insurance, but not able to always preform as well as should, hide the headaches, fatigue, and jump train, only to climb on another train that eventually too would become a run away train wreck, of hide your illness, and work and don't take the time to recover (as so many thought there was nothing to recover from, which could be done in a couple of weeks). It was sweeping the illness under a rug, until the lumps under the rug became a mountain. If only there was a way to get research done on this, to get medical research done, so it can be acknowledged and understood, by the medical communities.

  • Hi Sopie people can think what they want as far as I am concerned who would ever want to feel the way we do.I am one of those people that has worked through everything all my life.This post meningitis is the only thing that has beaten me at the moment but I will beat this eventually I am having to fight hard and I have the full support from my husband that spends all his time with me if that was not the case I would be finished I would not have managed this illness that's how bad I have felt.I am having to go private as well to try and get to the bottom of this.I would really like to help you but at the moment I am trying hard to help myself even spending money on it which I find appalling.I hope one day when I feel better I would like to do something about awareness of the after math of this illness but at the moment I could not run a raffle never mind anything else at the moment. Can you tell me what you feel like where you are hurting.i will wait on your reply .when I can get some good news I will post it .take care and I hope you are not suffering to much. Jean viral meningitis.

  • My bad days, which the last bad day was about 3 weeks ago, I couldn't get out of bed, all day due to the headache, nausea, the aching in my neck, and back. It actually hurts to walk, as each step is a jar to my back and sends what feels like shock waves down my back and up to my neck and head. I hate light, I hate noise, I want to be in a dark quite room and I am so sleepy, I just sleep all day and again all night. At times I have had jerking feelings in my legs and body, which I fight against. Primary feelings of a pressure on head, like it is in a vice and pressing against my ears, pushing to the top of my head. The headache is more dull, than sharp, but the general feeling of just don't move, lie still and sleep, and nausea is almost overwhelming. It takes a few days to recover from this, and usually by day 3 or so, I am moving around as normal, only taking things rather slow. I get confused at times and thinking is not always clear. Then slowly things become normal for me again. I am not sure anymore if normal for me, is normal, as others would know it, but it is what it is. ---------------Is this anything similar to you?

  • I understand more about what you wrote than I wish I did. You are right, I too, have had doctors walk away from me, and instead of telling me, I don't know or I have not seen this before, they only wanted me to believe, it was my fault, or that I was making this up, since how could they not know, as if they know everything, and if they don't know of this, then it is not valid. I wish it wasn't valid, I really wish it is physiological, as I am sure in time I would have recovered. Reality is, I don't believe anyone could imagen something like this as many years as I have had to, and only to hear others describe the exact same thing, I know it is not me.

  • I am having a really terrible time of it I am so weak my head hurts 24/7 I am now getting breathless I hurt all over and yet my doctor says the other day I will have to live with it there nothing she can do.I had to send for her twice this week as my tummy was so swollen and hurt under my rid cage my blood came back with my liver fatty.I ad to get her again for my headache and she gave me a tramadol injection which bairly touched the pain.I know I won't be able to go on like this.I need some one to tell me what's going on with me as I am at a loss never felt like this till I had menigitise.I just wish someone would listen.Jean VM

  • Hope this finds you doing better. Take care and let us know how you are now doing.

  • Thank you Sopie for taken the time to post.I will keep in formed just having an awful time at the moment.jean VM. X

  • Hope ur doing better today-- keep fighting there really is no other choice-- I wish I had the answer-- but I know to say nothing and hold it in -- is not the right thing-- I have done that for years-- I think it will take us to identify we are not alone and all of us to keep reminding the medical community there are others saying the same thing to hopefully get someone's attention for the need to research this and hopefully find some answers

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