My meningitis story

[Ace_survivor]

Sunday 16th July 2017

I’m Claire age 33..

A few days before on the Wednesday, slept till 5pm (unusual for me) woke up not feeling great but I still went to rugby training as normal, came home still not feeling right so I went to bed, woke up the next day with an horrific headache and generally feeling exhausted and aching, could hardly get around to use the toilet and to get some water, I was thinking maybe I’m just aching from rugby but this feeling was 100 times worse, so back to sleep I went, so basically I went 3 days in darkness, in and out of sleep and unable to move. I went to see a doctor on the Saturday about 6pm, urine sample showed high white blood cells, blood in my urine and was diagnosed with a kidney infection and kidney stones. Went home with antibiotics but told if my symptoms get worse to come back. Literally 9 hours later I couldn’t walk, vomiting blood, no control of my bladder, temp of 40. I phoned 111 because I didn’t want the fuss even tho I felt like I was about to die. They sent an ambulance, temp 40.5, straight on the drip in the ambulance, had a towel on my face because the light felt like it was burning my eyes. Got to the hospital, had 8 lumbar punctures, I was in extreme pain, even to the point of someone touching me would hurt so bad. I was straight on the medication through IV and diagnosed with meningoencephalitis. I spent 2 weeks on the IV antibiotics, couldn’t eat, drink, walk, control my bladder, I feet like I was going to die. I spent 3 weeks in hospital, i lost about 28lbs, I was in a wheelchair, then Zimmer frame then crutches,, I had to learn to walk again.

It’s now almost the end of September 2017, my daily life has changed dramatically, constant headaches, so bad I can’t move for days, I’ll get one or two good(ish) days a week but most of the time I’m lying down crying in pain. I have finally been prescribed Gabapentin, I was originally offered Amitripaline but I would have to come off one medication (4weeks) then start them. But the amount of pain I was in I needed a quick fix I had no quality of life in me and couldn’t carry on like it anymore. I can feel myself going into a downward spiral, I can’t work, play rugby or socialise with friends. I hate loud noises and missed an important wedding due to the fear of the loud music and my constant headaches. I also recognise people have a tougher time than me, I’m lucky to have my limbs, But this is my battle. I’m also left with terrible memory loss, can’t drive, basically can’t do much at all. Anyone recommend anything for the pain and memory loss?

Also I’m so great full finding this page and read other people’s stories. I don’t feel so alone anymore and also very educating because I didn’t know anything about meningitis, the hospital didn’t really tell me much. But my GP have been amazing.

[misswinky34]

hi hun, can't give you much advice ad my son was a tiny baby when he got BM but i just wanted to say thanks for sharing. I think ppl massively underestimate how long the recovery is and the ripples that go on afterward. There's a couple of people that have mentioned high dose b12 (1000mcg) is supposed to help with the 'brain fog' memory loss type symptoms. It's just one day at a time, one step at a time. Good days and bad, learning your own limitations. I imagine its very frustrating for you given your so active, plus reality is you've had a brain injury so rugby might be pretty dangerous unless you could use head protection, as i imagine a whack on the head would be magnified after what you have been through. You should go back to your gp and get some proper support, or get referred to a neurologist who should be able to give you sone decent pain relief. you can put your life back together but it just takes time. Don't be annoyed with your body for taking a long time to heal. You sound strong and you will get there. utilise any support you can.

thank for sharing ❤❤❤

[avnot]

Hi, I'm on gabapentin for nerve pain related to fibromyalgia, I've found it quite hard to find the dose that is right for me, listen to your body, 600mgs X 3 daily was way too much, have me headaches worse than normal Fibro, 300mgs X3 daily seems just right, the takes the edge off. Epsom salt baths really help me, accepting to pace myself. Paracetamol 24hrs a day so I take three doses in a day. It's very underestimated in my view, the doctor explained it's pain relief is cumulative, so taking consistently is better than dipping in and out of it. Do things for your mental health, any thing that makes you happy, and be open to considering anti depressants. I hadn't realised how much chronic pain had affected my well-being and ability to be able to enjoy the simplest things. Huge hugs. Not sure if this is any help at all. Xxxx

[Blim]

Hi.

So sorry to hear you've had such a rough time. I had terrible headaches after BM and it was only after a couple of years that a neurologist diagnosed chronic migraines. I now take 100mg amyltriptalin (which I can't spell) at night and 50mg topiramate morning and evening. If my head is really bad I do take cocodamol but only occasionally as I am frightened of becoming addicted to it. At first the headaches were unbearable and if I didn't spend most of the day resting they would be terrible. 5 years on they are now much more under control.

I have memory and word finding problems. I was lucky enough to see a neuropsychologist who did lots of tests and gave some really good advice. I have been told I have a Brain Injury as a result of the Meningitis and as a result my gp referred me to Headway. They have been great helping me find strategies coping with memory loss and how to cope with issues at work that I might not want to discuss with colleagues.

You are doing really well so soon after being so ill. So many think it is just like a bad dose of the flu when it has the potential to be life changing. People on this forum are lovely and I hope you find something that helps.

Best wishes Blim

[Lippistix]

Hi there, please read my daughter, Rosie S's Story on this site. She, like you was in a terrible state post VM for near on two years, but after having some cranial massage sessions, from a cranial osteopath, she is pretty much cured and feels back to her old self. It's the only thing that worked for her after trying antidepressants and varied painkillers. This has been such a recent breakthrough, that she has been in local newspapers and now a radio station would like to interview her in order to spread the word. I realise that you had BM, and seems you are in a far worse state than my daughter, but if you'll try anything this may help you?...the massage stimulates the spinal fluid to get moving around your brain again, thus helping with the headaches. Wishing you luck with your recovery. Xx

[Morrellem]

Hi Claire,

I just wanted to say I think you are doing amazing especially to read all that you you have got through and are still going through - I'm 4 weeks post VM and I'm struggling but reading you're story you have made me realise to not give up on myself and that compared to so many others haven't had it anywhere near as bad as you .

I've read lots on taking high does Vitamin D for our immune systems so not sure if you have tryed that? Epsom Salt baths to draw out toxins from the body and also complementary therapies Cranial osteopathy , acupuncture & Reflexology ( you may find some people come to the house) . I'm going to give them a go .

Good Luck and keep going you have proved what a strong willed woman you are 💗 Emma xx