I've got viral meningitis

[User543211]

I'm just posting to ask advice from anyone that has suffered with this and also just to process what has happened as I'm still feeling rough and worried that my perception is off.
Firstly, if anyone has any tips for recovery I'm all ears. I haven't got out of bed today and still getting the headache when I stand up. Worried how long this last for and wondering if the headaches is actually a side effect of the lumbar puncture?

Back story
I was in perfect health then on Wednesday night woke with the most awful headache, neck stiffness and fever. Felt terrible. By the morning it was worse and also had light sensitivity. I was quite scared from the head pain and called 111 who said they were sending an ambulance due to meningitis possibly. An hour later (8am) a community first responder called to reassess me as there would be no ambulance availability for hours. I told her my husband could drive me, she said no need. I told her all the same things and she said best to ring GP at 9 as didn't sound like meningitis (great). Gp appointment isn't til 11 so I'm just curled up in the dark in my own world. Gp sends me straight to hospital. I've also had coldsores over the last week so he was concerned about encephalitis. Wait in a and e for 4 hours (lay on the chairs just not even able to move my eye balls). See a doc who says I hardly look like a meningitis case. Does bloods, 3 HR wait for results still in a and e waiting room, clear bloods. Told it's probably a cold or COVID and sent home at 8pm. By Friday morning I feel like I'm going to die so back to a and e. Triaged to the hospital GP, 4 hour wait in tears. Can't walk. He orders CT. Moved to a ward. Wait 6 hours for results. Doc finds me and says they thought I'd left as no-one knew where I was and they've had the result for hours (clear) and now need lumbar puncture. Because they lost me there's no time to do it today but they're sure it's viral meningitis but want to check for a bleed on the brain. I tell them I was in the day before and was sent home, they decide to the LP immediately. Confirmed viral meningitis.
I know it's not life threatening and many more poorly people than me, but I was a classic case with all the symptoms and felt so dismissed and belittled by the doc in a and e especially. I was not in any state to question anything but today I just feel upset about it.

Sorry for the long post.

Sorry you're going through this, I've had viral meningitis twice and honestly the only thing you can do is treat your pain and rest. Rest is your friend. Be prepared for it to take weeks until you feel 100% again.

Also when I moved ward they couldn't give me any painkillers for 7 hours as they didn't have my details from patient transfer and didn't know why I'd been brought there. I also was on a chair in the corridor for 6 hours, hardly able to move, because although they had plenty of spare beds they were waiting for them to be cleaned. I realise resources are stretched but seeing it like that was awful.

Blimey you've been treat terribly I'm so sorry. I think the first doctor who said you don't look like a meningitis case should be dealt with tbh, that's shocking. I had viral meningitis that had developed into encephalitis, was put on an acyclovir and antibiotic drip for a week as initially they couldn't be certain whether it was bacterial or viral so decided to treat for both. Just watch out for any new speech, behavioural or memory issues as those are signs of encephalitis. Hope you start to feel better soon. Honestly I feel that NHS hospital experiences can worsen everything and are very stressful so once diagnosed, unless you need specialist treatment you're far better off at home.

Thanks @RomanRoysSearchHistory and sorry to hear about your experience that sounds awful.
I've thankfully never had to go a and e in my life so far and have only ever been with my Dh for a broken leg and my very young children and in both cases they've been amazing.
Very happy to be recovering at home. If they'd done the necessary on the first day I wouldn't have needed to take up a bed on Friday night which someone else probably needed. I feel so guilty about it.
It sounds terrible but I'm quite a reserved person and my way to deal with pain is quietness and I just go into myself. It's like they wanted me to be 'acting' out more to show how much pain I was in?! I did tell them (calmly) worst of my life , worse than childbirth, 9/10 etc.
Once I was properly admitted the drs and nurses were great I must say.

Do you suffer with anxiety now related to the headaches? I just just got up for a drink and the headache started and my heart was racing from the thought of feeling that pain again.

I'm sorry you had to go through that.
Terrible treatment of a very sick patient.
If, God forbid you had died the coroner would no doubt state that the hospital and your doctors had questions to be answered and the hospital would issue a statement stating lessons had been learned blah blah blah...

Wishing you a speedy recovery.

It's so frustrating isn't it. I spent 29 hours in a and E the first time and treatment was abysmal really. I'm sure if I'd have been treated properly, and earlier, I wouldn't have ended up staying in as long as I did.

Do you suffer with anxiety now related to the headaches?

You may get a headache from getting up too quickly after a lumbar puncture too, I'm sure you're supposed to stay lay down for 24 hours as there can be a CFS leak at the injection site that causes even worse headaches? It's a while since I had one so can't remember.

It's 22 years ago now. But no, not anxiety as such but I did have a very long recovery, 10 years or so. Although I was in hospital for several weeks and was pretty sick, almost died. 3 x covid bouts caused a big relapse in my post meningoencephalitis sequela too, so I do have some health anxiety but not specifically related to headaches. If you're able to string sentences together and type lucid responses out then I honestly wouldn't worry too much at all.

I had it a few years ago - luckily I couldn't fault my treatment and I spent a week in hospital. I'll be honest with you - it took me 6 months before I felt back to normal. That doesn't mean I couldn't do what I did before but I found fatigue a real issue. The only advice I would give you is listen to your body - if you're tired, rest , if you have pain take painkillers as needed.
I've never had any further problems since. Wishing you all the best and look after yourself

Thank you @RomanRoysSearchHistory that sounds incredibly hard.
Hope you're feeling better now.

You had all the classic symptoms of meningitis! Wtf was the first responder thinking?
I would put in a complaint about your treatment from start to finish. This is the only way to be listened to and the only way it will be highlighted to the clinicians that saw you

Thanks for that advice @Craftysue . I struggle to slow down so that's something I'll make sure to do.

I fully agree with this advice.

I had viral meningitis, worst headache of my life and couldn't stop vomiting. They kept telling me it was a migraine. I knew it wasn't! Anyway, took me months to feel 'well' again, post viral fatigue and kept catching every bug going but was back at work 3 weeks later, which in hindsight was far too soon. So my advice would be rest, rest and then rest some more. If I'd taken it easier i think I'd have improved quicker.

Absolutely this.

It's terrifying that you could be treated so badly. I hope you make a full recovery and feel much better soon.

Thanks @HousedInMySoul . This is what I feel like doing but I was worried that I was being ridiculous. I'm deeply sympathetic for the strains they're under but I just don't see how it wasn't picked up. I also felt very sick.
The fact that it's virtually indistinguishable from BM in the early stages terrifies me, especially the first responder delaying my hospital visit by 3 hours. Could have done huge damage to me and worse, others in the future.

I've had viral meningitis twice. The first time - around 25 years ago - was by far the worst - mostly because no one is the hospital told me to stay lying down after the (newly qualified doctor who had never done a LP) made a bit of a hack of it and then encouraged me to sit up and try and eat soup!

My symptoms were exactly as yours (no rash) and it was my lovely mum RIP who realised pretty quickly what was going on when DP called her to tell her I was unwell. I think I would have made a far quicker recovery - week to ten days - were it not for the LP /sitting up thing. The headache I had for the next month was like nothing I have experienced before or since. I could not lift my head one inch off the pillow without vomiting in pain. I could not get up to use the loo or wash so existed almost exclusively on water and bare minimum of food, valium and opiate painkiller (from my lovely GP). It didn't touch the pain but it did make me so out of it that i could stand it. I honestly lay in bed, almost hallucinating with pain and painkillers for a month. Horrendous. I know now that I should have had a blood patch but nobody offered it to me then.

Second time - much better. I knew to stat flat after the LP and I was complete;u better after about 10 days.

It's a very poor response you've had and when you are better, think about if you want to complain. But right. now, just focus on taking care of yourself. And if rhe pain does get significantly worse and become excruciating, please mention that you are concerned that there might have been a leak in the spinal fluid during the LP, and ask if a blood patch is appropriate.

I was in A&E from 5pm on Thursday to 7am Friday sitting on a chair all night - I was sent in by ambulance service with chest pain whilst on holiday - I have a known heart problem. It was a nightmare, not just for me, but for all the other people waiting, vomiting, crawling across the floor as too weak to walk while staff ignored him - I could go on. It was a disgrace. One of the receptionists was coughing and sneezing all over the place. I now have covid.

I am so sorry that you have been tied up in this mess whilst feeling so ill. I am wishing you a speedy recovery.

By the way it was such chaos that one of the doctor's rang me on my mobile as he could not find me - you couldn't make it up. I was sitting right by him.

Hi, I was wondering how you are feeling now?
I've currently got viral meningitis, 5 days in hospital and now home but I'm wiped out! Headache isn't as bad (thank the lord) but still bad if that makes sense, I feel exhausted no energy and fatigued even with resting.

Hi @itiswhatitisxx , how are you feeling? It's so awful isn't it. I was pretty much horizontal for 3 weeks. I felt very sick a lot of time and slept a lot. I lost a stone despite hardly moving!
BUT I have made a full recovery and am now completely back to my normal self, exercising, eating, working etc all as normal. I would say though that resting properly is absolutely vital to a good recovery, your brain literally needs time to let the swelling go down so don't over do it. I probably did too much too soon (also with kids it's impossible to do nothing) and really had to stop myself from 'just' doing what seemed like quick household tasks which actually end up being a lot by the time you've done a few things. Have you got much support around you? Accept any help you can get and I hope you feel better soon.
I would say aftercare has been 0, I never had any kind of follow up and the charity meningitis now say they're trying to make this standard. My GP didn't even know my case was confirmed until I went in with my kids for something else last week.
I think I maybe go to a headache quicker than before if that sense? So if I haven't drank enough it comes on sooner. But really nothing major. I haven't been ill once yet though so I'm dreading the next cold or whatever as I'm scared of it happening again but hopefully that'll pass with time. Sending hugs!

Hi @User543211
Thank you for replying.
I'm sorry to hear you also went through this but I'm very pleased that you're now back to normal 🤗 I agree about the aftercare, I think check ups should happen and most certainly your doctor should of known! It's such a serious thing!

I'm feeling like you did nausea and tiredness. I just feel so weak like I have no energy to do anything. Headache and neck ache is still hanging around too. Luckily I have people around me who are taking care of me. I know I need to rest but I almost feel bad for doing nothing and thinking doing nothing is making me feel worse if that makes sense?
How long did your recovery take? X

@itiswhatitisxx oh I felt the exact same, I am a hypocrite! I was back to work after 3 weeks (WFH though) but it was probably too early. I felt loads better within 5-6 weeks and have felt immensely grateful for my health since. Like I've got a new energy after being so poorly!
They did trace mine back to a particular virus (a common stomach bug) after the lumbar puncture and called me a week later to tell me what it was, though they can't say why it caused meningitis. Have they given you any info like that?

I had my lumbar puncture and the virus marker came back positive for a certain virus which they never went into depth with as I had no symptoms of it or had symptoms of within the weeks leading up to.
It's hard to not be hard on ourselves I suppose, I keep thinking now I've got a works party end of this month surely I'll be fine but I think I'm being naive. I know I need to not push myself but struggling not to want to try.
I think lack of advice as you've said previously doesn't help, maybe with it you'd of known going back after 3 weeks wasn't right.
They just sort of say rest up and that's it don't they. I do think more should be done, it must of knocked your confidence. Even the start of a headache must really throw you off now. X

@itiswhatitisxx yes I didn't have any symptoms either, it's weird isn't it. I found it all quite interesting though, I didn't know anything about viral meningitis beforehand. And don't write off your works party - you might feel up for going for an hour or two and honestly you have to look after your mental health as well as being in bed or on the sofa all day gets pretty miserable! And yes, I do worry when I get a headache now but as you know the meningitis headache is so sudden and so awful that I'd definitely know haha. They say if you've had it once you're more likely to have it again which is a worry but thankfully I seem have recovered fine, hopefully you will too!

So glad you've recovered @User543211 . Did you put in a complaint about the poor treatment you received? It sounds like, in someone with underlying conditions or greater age, this treatment delay could have been fatal.