Viral Meningitis- So many effects and so little answers

Diagnosed June 12, 2012, symptoms were Headache, Fever, sweats, neck stiffness only when nodding up and down, (sideways was fine). Vomiting. Hospital did a spinal tap and diagnosed me, then released me the next morning. I was in bed for almost a month. Seem to get a little better/ stronger by end of July and went back to work (desk job) for 2 months only 2 days a week. Oct 6th, turning point again. Vertigo very bad and could not get out of bed or move my head. (I have had slight vertigo for the past 2 years which I have managed), Extremely out of breath, just getting dressed, I had to sit, walking 100 ft, I was out of breath. This was worrying me as it came on so suddenly, Heartburn where I was bringing up bile constantly, very very mild headache and extreme sleepiness. I went to the hospital on Oct 15th. They took an EKG, heart looked fine, they did bloodwork, all came back ok, they did a lung extra, Lungs look fine, they tested my oxygen while i was walking, All ok even though I felt I had run a mile. So all these now symptoms and all results coming back saying I was good. So now what? I have not been the same since my diagnosis of meningitis, even months prior to the diagnoses, I was very lethargic and tired. I was however doing alot of walking at that time. Doctors I spoke to said they did not know enough about VM to state this could be the after effects. I am thinking that these symptoms are post VM mixed in with a bout of depression/anxiety from being bed ridden. I really don't know at this point. I am going back to my doctor today, but dont even know what to tell her. Will keep you informed of this discouraging journey to let you all know if I get any answers that may help us all here on this forum.

Debbie

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  • i cannot believe that they released me the next morning, that is disgusting

    i would call I 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

    and get real advise as soon as possible

    symptoms are post VM depression/anxiety this is a side effect of VM, not you, but your body has just had enough

    going back to my doctor write down every symptom, if you feel you are getting now where go to another DOC until they hear you, best of luck hon

  • Hi Debbie, as a 10 year plus survivor of VM I can tell you that it does get better but you may have to adjust what 'normal' means to you. Doctors not knowing much about VM is not uncommon but to actually say it as a reason not to treat you is unbelievable. I was discharged from hospital three days after the initial attack even though I had nearly died the day before and was then rushed back in three days later unconscious and with collapsing veins and blood pressure going through the floor so the medical profession being ignorant is I'm afraid all too common.

    In the end with my GP I printed out the VM fact sheet available here: meningitis-trust.org/index.... towards the bottom of the page and took it with me and asked him how many VM patients he had seen. After a bit of prevaricating and 'all meningitis is the same' type comments he finally had to admit he hadn't actually treated anyone with VM and he agreed to read the fact sheet then from there he was a lot more sympathetic.

    VM is often seen as the not quite so serious version of meningitis which is just rubbish because it can take a lot longer to recover from it and it can kill although not so often as the other variants. My advice (and I'm sure Tiga's too) would be to make yourself a bloody nuisance until they listen to you and if they don't listen to you complain to the practice manager for your GP or to the hospital medical director if that setting. I know from the NHS if you sit by quietly they'll let you, if you get noticed they will do something.

    Good luck and you might also like the I had Viral Meningitis Facebook pages here: facebook.com/pages/I-had-Vi... where a whole bunch of us share experiences which I found helps a great deal.

    Cheers, Jonathan

  • Thanks for responding Jonathan and Tiga, Update, I went to the doctors yesterday and she has now diagnosed me as having panic attacks and depression and put me on Ciprolex. She said the because all of my tests came back ok, (EKG, Blood, Xrays) that the tiredness, dizziness, out of breath etc are also all signs of anxiety and depression. 3 weeks ago I would not have agreed but I cant see what else it could be now with all my tests being ok. I do think it is a spin off of the VM though. Will keep you all posted and hopefully my posts can also help someone else.

  • Hi Haywood, Just wanted to mention what my doc is doing in case its something that might help you, if you read my blog, I had VM twice in three months this year, end of May and end of August. After the first one I was very similar to you and could barely walk around the block and was so tired and lethargic.

    After the second vm outbreak I felt a little better and my doc put me on Aciclovir 400mg twice daily, which is the anti viral that they treated me with in hospital, its given prophylactically to me to try and prevent another dose in case the little bugger is still lurking in my system. It may be worth a mention to your doctor and it cannot do you any harm.

    I am now picking up nicely and although still pretty scared and have the odd bad day I am really beginning to feel that I have a chance of getting someone near normal. No Guarantee that I won't get it again but feel much more confident with this drug and its possible that the drug is making this improvement, no way of knowing but it has to be worth a try for you.

    Keep fighting and don't let them fob you off, unless the doc has specials reasons give it a try, I don't know if it is the cause of my improvement but something has made this turn around.

    Good luck

    Keefy

  • Hi Debbie.

    I read with great interest your message and have total understanding of what you and other sufferers have and are going through. I was admitted to hospital in February 2012 with suspected meningitis. Turns out after having treatment for bacterial meningitis over 9 days the outcome was a severe bout of viral meningitis. The after effects have been very strong, ranging from bad head and neck spasms, blurred vision and a degredation in eyesight, lack of concentration and memory loss amongst others. Prior to contracting meningitis I was very active at both work and socially (regular runner). I found that as time went on I had very very little energy, constantly out of breath and struggled to walk even the shortest of distances. This caused my to become depressed in myself. Knowing how active I was to becoming someone who struggled to get out of the door. I have had numerous discussions with my GP about this and although very sympathetic informed me to continue resting and that eventually I would get back to being myself again.

    I recently had a visit from a medical consultant who went into great detail about my past, right back to leaving school, through my work history, right up to the point of contracting meningitis. He informed me in his belief, my body had had enough, was exhausted and unfortunately meningitis was the outcome. He continued to inform me that the after effects would heal, however, I would need to change my lifestyle considerably. A change in work being the strongest advice. He then proceeded to inform me that although the after effects of the meningitis was a very strong contributor to my lack of energy and tiredness, my mental state tied in with my physical state needed joining back together again. It is great to have the physical aspect back to normal but also he said you have to have the mental attitudes back to normal too.

    With this advice he recommended what is known as "Human Givens Therapy" Their website is hgi.org.uk. I have no idea if this is going to work but I have my first session tomorrow (22nd October) but I want to give it a go to see if this will aid my recovery. I will keep everyone posted on progress.

    I have also recently been given a Gold Bond Status for the Meningitis Trust to run the London Marathon in 2013 for them. This is a massive honour for me to represent the charity that is very close to my heart and it also gives me a massive personal goal to aim for.

    Please take care and hopefully my comments will aid you and others around.

    Very best regards

    Dave

  • Hi Dave, Thank you so much for responding. I know the medical system here in Canada is not up to par on viral meningitis so it is a guessing game for them. My diagnoses is that My system got run down due to a bunch of stressful issues I was dealing with over the last 2 years. (My normal was very outgoing, lots of energy, never got sick, not even a cold, loved to laugh, loved the outdoors) and withing the last 2 years everything changed. Then the viral meningitis put me on my back for months and I lost all of my normal..and that is when the out of breath, constant tiredness, vertigo and everything happened. I beleive now that this all was caused for stress which turned into depression so I am hoping the Ciprilex that my doctor has put me on for anxiety/depression starts to work...

    Congrads on the London Marathon, please keep me informed on your progress with "human givens Therapy"

    Cheers

    Debbie

  • Hi Debbie.

    Great to hear from you and the more I hear the more I fully understand what you are experiencing. The medical system here in the UK is like most places, they have the knowledge of bacterial meningitis but are still learning in a big way what viral meningitis is all about. I see so many comments where feedback is needed from viral sufferers to gain the knowledge what we have been through and what we are going through.

    I too had so many stressful issues going on at the time and I and my family put my bout of meningitis down to this. People need to understand how to recognise the symptoms but also need to offer the support for those who suffer and so importantly their families who themselves go through the nightmare themselves.

    This has really turned my life around. As well as wanting to get better myself, I am dedicated to helping others and to supporting the Meningitis Trust.

    Will keep you posted on the therapy and I do hope that your doctors recommendation of Ciprilex works for you.

    Take care.

    Dave

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