viral meningitis at my wits end!

In May of this year,i had a virus that put me in bed for a week, i never got over it even though both my husband and son had.

At the end of July, after having a mild headache all day i suffered convulsions at night,i went blue, couldn't breath properly, my husband rang an ambulance. The ambulance man said it was a panic attack, an hour later my blood pressure and heart beat were still all over the place, i couldn't think right, couldn't stand light or noise, my head hurt and the back of my neck and i felt so dehydrated and sick.

The A&E were a nightmare as Panic attack was written on the notes from the ambulance they hung their hat and coat on that diagnosis and left me in a side room for hours, in an out of sleep, my blood pressure 74/52. After about 6 hours they then wheeled me out of the side room and into the bright a&e next to the nurses station where i broke down and cried as the light and noise hurt my head so much, basically to be ignored again by all the doctors and nurses.

I had a Ct scan and also bloods taken, after speaking to a Doctor he said was concerned and said he wanted to do a lumbar puncture, after the inital doctors shift was over, nothing was done, i was left again for hours, no pain killers no drink, i figured as i felt like i was dying i'd go home as no-one was helping me and ignoring me, so i signed myself out in absolute hysterics.

I slept all day and night. When i woke up the next day i felt a million times worse. I went to the doctors and my husband had to speak for me as i felt shut in, couldn't speak properly stuttering and dribbling due to head ache and eye pain, i could barely walk.

I was taken to hospital and after seeing two doctors was diagnosed with sypmtoms of viral meningitis.I was told i would have another scan an mri in the morning and a lumbar puncture. The morning came and another doctor came to see me, telling me i could go home!! i asked about the lumbar puncture, he said as i had had a virus all that time ago, there was no reason for me to have a lumbar puncture as i'd have to stay in hospital longer and i needed rest and as he was happy with the disgnosis of viral meningitis i was to go home.

I slept for nearly 4 weeks waking up only an hour or two a day. I have lost over a stone and a half. I still feel virus like after all this time and the doctors say there is nothing they can do, i have to wait, its been 9 weeks. My back hurts, my ears hurt,i still suffer from light sensitivity and have black outs if i get up too soon, i can't think straight still, i have some good days, but some awful ones like today.

After nearly 2 weeks of feeling like i was getting better and more normal My son was in school sat next to a boy that was ill, i spent 5 minutes with him in the car and im ill again!! Feel the same, when will this end?? i also have alot of stomach pains? does anyone else? I think doctors generally don't listen and assume you are a hypercondriac, i have vistied docs a handfull of times in 4 years prior to this. Always the same question, what do you think we can do for you!! prehaps if i'd had the lumbar puncture they'd have an idea of what virus it was and maybe able to give me anti viral, but no its all about cost cutting and tending to drunks in the ER. I'm at my wits end.Sorry about spelling and grammar, i took about an hour to write this as my brain is mush!

8 Replies

oldestnewest
  • have had a look on Google for you, but you can call the meningitis hot line which is 24 hour

    Freephone UK number:

    0808 80 10 388*

    Freephone Republic of Ireland:

    1800 523 196

    nurse-led helpline is available 24 hours per day, 365 days of the year

    your story is so like ours, if you look into my story, you too will see how badly i was treated, it is shocking, but i would call the above numbers and get advise

    ]best of luck hon

  • Hi Duffmond, what a dreadful story and how badly you were treated. We hear about bad treatment of us "Meningitis lot" all the time but yours does sound particularly bad. Either you or your husband get the computer fired up my girl and complain to the rafters. Head of the hospital, the board of the hospital, the mp, the health secretary, the prime minister, the gp surgery (head of) the local gp association and the country's mp association you can see where i am going with this, it may not help you now right this minute but start the ball rolling, it really is a great tonic to start hitting this lot where it might hurt in the ballot box. I would go to your local paper as well, let them know about the hospital and the way you are treated, you have to push these cretins into a corner, the knowledge they have and view they have of Viral Meningitis beggars belief. Dont let them win!!! The theraputic value of you and your family doing this will help a lot believe me. I had VM twice this year in May and August the last 5 months of my life have been the worst of my life, I may have mollarets meningitis which means I could get it many times for the rest of my life, I may just have fluked two attacks in 3 months who knows. I felt really low and still do at many times but I have had a good period where I told the docs and my work what I thought of how they treated me, you would be amazed at how quick people are on the back foot and how quick they suddenly want to help. I have a years supply of anti virals because of getting it twice and although it will not stop me getting it, if the virus is still in my body, it might just beat it or help my body to beat it. Perhaps thats a way for your doc to go Aciclovir 400mg twice a day is what they give me.

    The Complaining was really good, your case is one of the worst I have read, they cannot and must not get away with treating you like that. Sit when you can type it out, change little bits depending on who you are sending it too but basically its the same letter to all of them.

    Get the local paper round let them see for themselves what you life is at present due to the idiots at the hospital.

    Best of luck to you duffmond, fight them girl, you have a family who love you and support you between you all, you will come through this but you need to take some of those reins when you can and steer yourself back to health, stay in touch here and let us know how you are doing. We will all be thinking of you I am sure take care now.

  • Hello duffmond,

    I am so sorry to hear about your experience of meningitis, and to hear that you are still feeling to unwell now. As Tiga has said, the Meningitis Trust are here to help you in any way that we can. You can email us from our website here at this link

    meningitis-trust.org/how-we...

    or ring our 24hr helpline 0808 8010 388, and speak to one of us on the support team.

    We provide support such as home visits, counselling, financial grants, one-to-one contacts. You can read about our support here meningitis-trust.org/how-we... . All our support is free to anyone in the UK who has had an experience of meningitis, and is available for as long as you may need it.

    Please do get in touch if you would like more information about meningitis, or our support available.

    Kind Regards,

    Judith

    Helpline Nurse

    0808 8010 388

  • Thanks for your comments.

    I think what made this worse was the way i was treated both at the a&e and at my doctors. After i went to my own gp, the first doctor i saw said , in his opinion i didn't have viral meningitis as he'd had it when he was a child and i'd be over it by now (that was 2 weeks in) i felt really confused and upset by this when i left the doctors surgery.As the hospital hadn't done a lumbar puncture they did not take me seriously.

    I did ring the meningitis trust helpline after that and the lady i spoke to was brilliant and made me feel i wasn't alone in all of this.

    When i am up to it i will persue the powers that be and ask for answers into why i was treated so badly, and also their faliure into investigating this further,properly.

    It didn't help that i was taken into hospital on a saturday night.

    The a&e was full of drunks and nurses overworked, but from what i did hear and see when they were treating the self inflicted drunken idiots is they were treated better than me and rallying around after them.

    I was even made to walk to the toilet even though everytime i got up my blood pressure dropped dangerously low!

    I wasn't treated with any empathy and ignored and that made it worse.

    I have lost my faith in the NHS.

    My poor husband has a herniated disc and degenerative disc disorder and is having to do all the work as we run our own business, plus looking after me and our 8 year old son and the house, it really has made him a million times worse in regards to his back pain, he gets no rest and looks like the walking dead most of the time. I thank him all the time and apologise as he has half killed himself looking after me.

    I have had a good few weeks on and off, but as i wrote previously, i now feel virus like, and the feeling scares me as i don't want to end up in bed for weeks again, if i do get worse, will they actually take me seriously at my g.p. or will i just be wasting my time.

    I am trying to stay focused on getting better,staying positive and fighting this but sometimes it overcomes me (negativity) and i feel alone as i can't keep worrying my husband. So thank you to all that commented and have shared your stories on here.

    Sarah x

  • Same here had in April... Then started to move around the house after about six weeks then week later taken back in it was awful but only stayed in one night lumbar puncture ct done that was it so recovery start again.... Got back to being able to attend work for three days part time so nine until twelve three days then broke up for seven week back to work one week and aday feeling so ill struggled so went gp.. Who said I have to takeout to a and even straight away ct scan done but said lumbar. Wasn't needed.... I have vm again.... Was meant to stay in the one night buthalf ten he said if I wanted I could go home..so I did.... So three times I can't believe it... I am glad you mentioned the stomach pain as I thought I was becoming a hypercondriact..... Excuse the spelling... I also feel unconscious of others. Objects..etcclumsy can't think properly...can't sleep...get extremely hot... My hair is fallingout in masses.... And totop itoff I just got a letter from work saying I will only get half pay from first of October...so how on earth am I meant to pay bills I don't know.. Just adds to the stress of being ill....

  • Also feel alone depressed....I am so scared of seeing people incase I get this again... And also what they think of me..being disease all time, people avoid me it's awful... Ihave a good day thentwo bad days.... I don't, know howto manage thisat all

  • This is an awful thing to go through, ring the meningitis trust helpline,they are so good and can help.

    It's awful that feeling of dread when you feel ill and alone. One things for sure,your not alone on here as we are all going through the same thing and in a way that's a good thing as we aren't made to feel like we are wasting anyone's time etc.. I think the pain killers i take are causing stomach problems. Things will get better I'm sure its just when?? That's the question. Stay positive ,take the good days, walking is good for me when I can to blow the cobwebs away so to speak. Get onto directgov see what help your entitled to. It's too easy to give up, harder to stay strong sometimes. Xx

  • I do empathise with you, it is an awful problem and not well recognised by medics. I am now 3 years down the road... its not an easy ride. Sometimes I feel back to my old (full of energy self) and then overdo it (I think) and feel rotten again. Tiredness is a major part of recovery I feel, you must be careful not to overdo it as then get into a fatigue phase, which I thankfully avoided.My GP was wonderful and really did understand, she stopped me returning to work (as a physiotherapist) when I was keen to return and definitely wasnt ready. I dont envy you with small children to look after when you feel so rubbish. I am sure I speak for many on this website who are here to understand and empathise completely. One thing that helped me tremendously was some counselling with the meningitis trust - they are meningitis trained counsellers and have such insight. The counselling helped with ,my personal acceptance of the problems associated with the virus and also to realise that my symptoms were normal (ie.. I wasnt going mad) The major thing to remember is that medical staff are not good at the diagnosis and treatment unless you are very acute and they are quite sure of the diagnosis, you very soon fall off the treatment waggon when you are not at deaths door.. but there are still very big hills to climb in your recovery. I wish you better health and patience whilst your poor brain and meninges recover, they will I am sure and they take more time than you may imagine. I have been having some acupuncture to help with my energy levels which has helped tremendously, if you pursue this make sure you go to a BACC member though I would suggest and not the high street folk. Good Luck and keep positive.

You may also like...