Viral meningitis: I have just been discharged... - Meningitis Now

Meningitis Now
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Viral meningitis

Rozey
Rozey

I have just been discharged from hospital following a diagnosis of viral meningitis. My husband remains in hospital and is very poorly.

I suspect that we have the same virus but cannot understand why he isn’t responding to treatment. He seems to be getting worse.

Doctors are at a loss and are running lots of tests. We are both 6 days in. I only have slight symptoms but he is still experiencing severe headaches.

I am feeling very tired. I have missed a week of work so far including hospital stay. Realistically when can I expect to be back working.

Anyone have any advice regarding my husband?

Thanks in advance x

11 Replies
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Hello,

I had Viral Meningitis in 2014, I was 30.

I’d had the headache for 5 days and went to A&E and was told I had a sinus infection and to go home and breathe in vic vapour rub! Day 6&7 I had a rash on my chest, stiff next and was really sensitive to bright light. I couldn’t stand up properly as the pressure in my head was unbearable!

My Doctor called me an ambulance from the Surgery and after a couple days in hospital and complete battle with them they finally done a lumbar puncture that confirmed it. I had picked up an entrovirus detected in my throat that had traveled up to my brain causing inflammation around in lining of my brain. I was discharged on paracetamol after 3 days! My mum cared for me at home but my health deteriorated and I ended up back in hospital just over a week.

I had the headache for 2 months. Tired to return to work after 3 months but struggled with processing information/ concentrating and extreme fatigue (I still get fatigue now 4 years on) - all after effects of Viral Meningitis.

I went back off Work and had a total of 6 months off in the end.

I’d advise you to contact “Meningitis Now”. I emailed them and they really helped with support and advice. Take a look at their website.

I’m glad to hear your symptoms have improved, your husband may just take more time.

I hope you are getting support from family and friends.

Also I hope your employer is being supportive and understanding?

Don’t return to work unless you feel absolutely 100%. This isn’t something you get over overnight.

Em 💕

I had near fatal VM 16 years ago. It is possible that your two cases are unrelated as they are usually triggered by a virus you already have (chickenpox is common). That would explain why you are both reacting differently, it's not like most other illnesses in the sense that it can affect people in different ways.

Treatment for any virus is less effective than for infections from what I understand so it may take longer for your husband to respond. Doctors in general don't really understand VM and it's not until you've had it that you realise this is the case. My GP had never treated anyone with VM for example and I was discharged from hospital the day after almost dying only to be re-admitted three days later.

Recovery from VM is difficult to predict, if your symptoms are mild then you may recover quite quickly but please don't rush back to work full time if you're still feeling tired. Rest is the key to a good recovery so when rest when your body says rest because otherwise if you push through it will take longer to recover.

If the doctors in hospital are not getting anywhere treating your husband then you can escalate this to the clinical director in the hospital if you're concerned. Doctors are taught in training that VM is no more serious than flu and recovery takes place in 2-3 weeks so I'm not surprised they are baffled. I was discharged because I had VM and 'it's never serious'.

Fingers crossed for you and your husband, take care, Jonathan

I had VM back in 2014 but I also had infections in my body as well. Was in hospital initially for a while as was in ICU due to the infections. Basically the vurus and infections were battling against each other or something, and as we all know you cant treat a virus really. Had 6 months off work once I was discharged, but my consultant said the norm would be a minimum of 12 months, but i was 'healthy' and determined,went back on a phased return as to this day don't know whether it was the VM or the infections but was left with a range of life long conditions.

Was struck with VM again November 2017 and in hospital for 3 days and off work this time for till the new term in January. The fatigue this time hit me like a train going 100 miles an hour!

Go with what you body tells you. Each person is different.

I had a very short stay in hospital ( 3 days) but prior to my stay I had severe head aches for 2 weeks. I have been out of hospital for 3 weeks and I still have unbearable headaches and pain from when they did 3 lumber punchers! I haven’t been back to work since as the doctors have signed me off, I need to go have my ears tested ( I’ve gone near enough completely dead) and have my back looked at because they might have a made a leak with my spinal fluid. I’m only 20. It’s scary, not knowing that much as it is just swept under the rug. It is brain damage and people need to get that! Everyone reacts differently to treatment, it’s our immune system! They also can’t give you a time frame to get better either! Don’t listen when they say 7-10 days. Once VM hits you, it hits hard! As for recovery then it’s lots of fluids, I’m currently drinking 2 L at least of water a day and paracetamol accompanied by ibroprofen and rest! Lots of rest and as for your husband... he’s in the best place for him, the doctors and nurses know what their doing.

I wish you all the well and a speedy recovery for you and your husband. X

Rozey
Rozey
in reply to Jasaaas

Thanks for your reply. I have been signed off work for a month! Doctor was really good and seemed to have a lot of experience with VM.

One minute I feel fine and feel like a fraud, then next minute I’m dead on my feet.

I’m doing paracetamol and ibuprofen back to back, too worried to stop!

Hubby has turned a corner today and just wants to come home. Fingers crossed

Rozey your husband’s scenario is identical to what happened to my son. He was five days in and completely unresponsive to treatment. It turned out he was allergic to penicillin. However with yours being viral I doubt they are using penicillin but it’s worth checking that he’s not allergic to any of the treatments. On changing antibiotics my son made a rapid and full recovery. Hoping you both recover very soon.

Rozey
Rozey
in reply to Blueforest

Hubby knows that he is allergic to penicillin so the medicines haven’t contained that from the start. He has turned a corner today and has stopped being sick. Fingers crossed he’s starting to recover. Thanks for your reply x

Jonathan has summed up the position very succinctly, the whole medical profession need very urgent retraining in dealing with meningitis patients. It really is quite staggering finding out just how little they understand about it or its after effects. In 2016 following two home visits my GP arranged an urgent admission into the Acute Medical Unit of Brighton Sussex County Hospital where the ignorance of doctors and consultants became all too apparent. Initially they diagnosed a stroke, then changed this to 'some sort' of infection, then after taking tons of blood they pumped me full of antiviral and antibacterial drugs which culminated with a lumbar puncture which was completely botched by a junior doctor. I was extremely lucky this did not result in very serious and permanent damage. At the end of five days I was discharged with a diagnosis of chronic migraines. I left hospital in a much worse state than when I was admitted. I couldn't walk or even stand up in addition to a plethora of other very unpleasant symptoms. I was left completely on my own to recover with no support or after care whatsoever. It was six months before I had a follow up appointment with a neurologist who despite agreeing I had some very disturbing lasting symptoms declared that he had no idea of what was going on. My sympathies go out to everyone knowing that this is the sort of 'care' on offer.

So sorry you and your husband are going through this. The pain is extremely severe went to ER, told me it's just a migrain. Gave me pain shot but it dinto work, several tests the it, took 6 hours before finally doing a lumbar test. Positive for meningitis. Rushed into isolation at hospital for a week, blood tests were uncontrolled, almost put on respirator cuz lung filling with fluid. I was sent home with morphine, norco, antibiotics etc..., yes still in pain plus sent home with catheter because i couldnt urinate, Took a month for me to fully recoup from urinary problem. I was off work for 1 year. Tried pushing work but I also have Fibromyalgia. I have no words but will keep you both in prayer. I hope we never get VM again, it's unbearable pain . Have alot more health issues since getting VM. I'm terrified to go through it again. I now Suffer from severe anxiety and depression due to VM after math. I thought I was dying.

I had VM three years ago and I only took a week off from work. It was suggested to take a few weeks off but iI outand wished had. I don't think I gave myself enough time to heal and I wished I had let down the line. So from experience, I'd recommend on not rushing back into work or much of anything if you don't have to.

I hope your husband is doing better.

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I had severe, ramping headaches on August 17th and couldn't relax, sleep or settle. I was also very sick and had problems processing my wife talking to me. I could barely say what I wanted even though I was trying. We ended up calling 999 on August 18th (24 hours later) Now I'm normally a cheerful and happy person of 66 yo but this hammered me. I had to wait an age in A and E majors (about three hours) and then saw a Doctor who ran a few tests and then admitted me to the MAU (Medical Assessment Unit) I stayed there for a few hours and ended up in isolation in the PIU (Planned Investigation Unit)

I had all the blood tests and so on then a lumbar puncture which showed that I had viral meningitis. I hadn't slept for three days and was exhausted. I was given all the antibiotics via an IV which usually wasn't powered and took an age to empty into me. Eventually one nurse found a powered IV and that was a blessing.

I was discharged three days later and still feel weird and unable (at times) to process many things.

I was asked if a Nurse could ask me a few questions and "assess me". The Nurse assessed me as if in A and E and came to the conclusion I may have had a stroke! She did say that was what she thought and that it is always best to come up with the worst diagnosis and then work back from that.

To be honest I thought I had had a stroke.

I am still getting headaches and have difficulty processing thoughts at times.

I do believe that because of my cheerful and friendly nature things worked against me in the A and E... Not sure but I refuse to face illness without a smile on my face.

As I've said I still feel a bit weird but don't know what to do :/

David

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