vital meningitis

[LivvyCowie]

Hello, I was diagnosed with viral meningitis almost 4 weeks ago now, through taking myself to a&e due to the headaches being unbearable and the pain in my neck. I had a few scans and tests and then a lumbar puncture which came back it is VM. I always u well for around 2 weeks before I actually went and got seen and have been unwell ever since. I spent just one night in hospital but they didn’t given me anything as said they didn’t know what actually caused the virus! I spent 3 weeks very unwell barely even able to get out of bed. I was a bit better over Christmas. I returned back to work last week, I work in a nursery. However this week I have started to feel awful again! I feel like the symptoms are just starting all over again, I feel constantly dizzy, my neck is a bit sore again, have pains in my ears and I’ve also been very agitated and quite depressed. Is this normal and I have I rushed back into returning to work. I thought I was actually feeling a lot better but I did 3 days back at work and was unwell again all weekend and very dizzy at work today but part of is worried I’m getting myself panicked about feeling that horrendous again!

[HickeyG]

Hi, I've been unwell for almost 5 months now with VM. Your symptoms were exactly the same reason that I ended up in hospital in November, and like you I stayed in for one night, had a lumbar puncture and wasn't given anything to help. It can be a very long road to recovery. I have days where I think I'm finally on the mend and then suddenly I'm so unwell again, this is normal for VM sufferers. I was off work for practically the whole of December and then thought I was fine to return. Even though I'm still at work my symptoms are getting worse again. An advisor from Meningitis Now told me to keep a diary and then compare week to week to see if there's any improvement in my symptoms, it's very up and down. The general advice I've been given is to give it time and to rest lots, hopefully we'll both be on the mend soon. Take care of yourself

[LivvyCowie in reply to HickeyG]

Thank you for your reply, it’s nice to hear from someone going through the same thing as sometimes I feel like I’m going crazy! I’m sorry you’ve been suffering too! Take care

[Jonad724]

I had near fatal VM in 2002 and to answer your question, yes this is all normal. VM does affect people in different ways and level of severity, but the common theme is that rest is the key to recovery. At the time I had health insurance and was able to see a Harley Street neurologist who told me the best way to get better was to rest, then rest a bit more and when I had done resting to do a bit more resting.

As I think you have discovered, if you try to do too much too soon it can knock you back again. This isn't helped by the medical profession still seeing VM as a 'mild' illness from which everyone recovers in 2-3 weeks. My GP even refused to sign me off work as he said I was malingering despite the fact I had to learn to walk and talk again, couldn't hold a sensible conversation and in the first few weeks couldn't even work out which of my two children was which. Worse than that, simple questions like 'would you like a cup of tea' flummoxed me so what you are describing sounds very similar.

Following my experiences, one of which was being rushed back into hospital 3 days after the first discharge 'checking out of hotel life' as my neurologist put it, I am now privileged to be a volunteer Community Ambassador for Meningitis Now with a particular focus on VM. If I can help at all, please let me know and please DM me if that is better. I have also written a few blog posts about my experiences, if you click on my profile then on 'posts' you should be able to see them.

Take care and please rest! Jonathan

[LivvyCowie in reply to Jonad724]

Thank you for your reply. I’m so sorry you went through that. How amazing you are now a community ambassador for meningitis now. Thank you for reassuring me that what I’m feeling is normal as I often feel like I’m going crazy! I will definitely try to get more rest

[Chri5ti]

Wow, I am so sorry the hospital just discharged you like that. The US doesn't think VM lasts more than 7-10 days but they do keep you in hospital for 5 days to grow cultures, make sure it isn't bacterial.

I am a recurrent VM sufferer (7x in 12 years) but don't worry, I am not the norm. However I will say that you need to learn to listen to your body. Recovery is a long road and if you rush it then it will be longer. Not sure if your job will work with you but you need to try. If you have a headache or other symptoms you need to rest. Rest and self care are so important with this disease. It just takes time and everyone is different. I have to say that even my 7 flare ups were different recovery times.

[LivvyCowie in reply to Chri5ti]

Thank you for your reply I’m so sorry to hear you have suffered it 7 times, how awful!

Thank you for reassuring me as I sometimes feel like I’m going crazy! I will definitely try to get more rest

[Chri5ti in reply to LivvyCowie]

You are not going crazy! The trick for me was listening to my body and not over doing it. Which was hard with 4 kids with busy schedules! But it makes a difference. And for me I finally found a doctor who would work with me. A neurologist who admitted he didn't understand VM let alone recurrent VM, but he works with me. Really helps me treat symptoms etc.

I've thought that long Covid really sounds like what I suffer post VM. Maybe we will get some real research into long recovery from serious virals, Covid and VM. Fingers crossed!

[LivvyCowie in reply to Chri5ti]

Thank you for your reply and for the reassurance. I’m pleased you’ve found a good doctor, it’s a shame there’s just not enough out there on the after affects of VM so we all keep suffering. I’m going to try and allow myself more rest, it’s a lot easier said than done when I work and I’m a mum. But I only have one 3 year little girl, so don’t know how you managed it with 4 kids.

Take care

[C-Northerner]

Mine has also been a rollercoaster - give yourself as much grace as you possible can during this time. Healing isn’t linear unfortunately - at least that’s what I am telling myself to stay sane… sometimes I get a couple days where I feel good and it’s hopeful and others absolute nightmare.

Reading everyone’s posts & the healthcare around the world sounds bonkers. Fight as much as you can to get support from your GP ♥️

[Hidden]

How do you feel now? I have been to ER (USA) twice. They will not do a lumbar puncture! 2 docs said likely VM and 2 said no. I’ve had a CT and MRI and even occipital injections. They said my neurology consult is the best thing which isn’t until next week!!! I am like 16 or 17 days of this intense throbbing headache and neck pain! Pain in my ears and you cannot even lightly touch the back of my head or sides of my neck. I must return to work but I work from home. I am not sure what to do.

[LivvyCowie]

I’m so sorry to hear this is how you’re feeling. I completely sympathise as that’s exactly how I was feeling too and it’s just horrendous. Why are your doctors refusing to the lumbar puncture? That’s so unfair. All I can advise is rest rest and more rest as much as possible. I’m having good days and bad days but when the bad days hit they hit hard. I’ve had to drop days at work for the time being to get as much rest in as possible. Listen to your body and if things get too much then rest some more. Take care x