Viral meningitis - I'm struggling

[Ami1234]

Hi, I've recently had viral meningitis got out of hospital just over two weeks ago. Im really struggling, I have been soo emotional all the time. I ache all over, still have these horrible headaches and reduced hearing in my left ear. For those of you that have had these symptoms how long did they last or were they permanent.

[YWurri]

Hi Ami, I had bacterial meningitis this time last year and spent a week in intensive care/two weeks in hospital.

When I was discharged I still had headaches and sensitivity to noise and light. I took paracetamol regularly and rested as much as I could (with a newborn baby and toddler to look after). It took another 2-3 weeks for the residual headaches to dissipate I'm afraid, but hope yours go sooner.

Your brain and body have been through a lot, so just try and sleep/rest as much as possible and be patient. Best wishes for a speedy recovery x

[Jonad724]

Hi Ami, I had near fatal VM in 2002 so I hope my longer term experience will give you some reassurance. Firstly as YWurri said your brain has gone through a trauma but the problem with VM is that the medical profession is taught that it's like flu, you get over it in a couple of weeks and there are very rarely if ever any side effects. There are loads of people on here, me included, who can testify that they are testiculating (waving their arms around talking b*llock*). What you describe post VM, especially this short a period after VM, are very normal for the illness and it's often very confusing when on one hand you have doctors telling you 'it's all in your mind' compared to how you actually feel. The difficulty is knowing how long these will last and whether they will be permanent and it is just not possible to say for sure although for the vast majority of people the symptoms ease and do get a lot better but it is a bit of a lottery I'm afraid. The common theme running through everyone's experiences (judging by what's written here) is that in the first few weeks and months after VM you have to listen to your body and rest. Bearing in mind (no pun intended) that the brain has its own built in mechanisms to make you rest if you're tired, you're tired and you should rest. I think the overwhelming desire is to get back to normal asap but that might take some time (I write a blog on here occasionally about my experiences which might help). There's also a really good Facebook group called 'I had Viral Meningitis' which is a focal point for sharing experiences. If it's any consolation I have now done two half ironman triathlons and will be doing my third this year in August so VM is not a totally life changing experience so long as you take it easy in your recovery, don't do too much too soon and understand that what you're going through is pretty normal post VM especially feeling emotional. Your brain has undergone an injury and being emotional is quite normal in the same way that if you broke your leg it would a) hurt and b) be bruised and sore for some time.

I think for most people the acute symptoms you are experiencing do lessen but there is a chance that you will have some after effects which might continue for some time but in the same way you wouldn't keep walking on a broken leg you have to rest and let your brain recover. Funnily enough it's not until you've had an illness like VM that you realise just how little the medical professions knows about how the brain works so try and develop some testiculating radar and do challenge doctors who tell you that you shouldn't be feeling the way you do X weeks after VM. Finally please do remember you are not alone with your experiences of this, there was no support when I had VM and felt dreadfully scared and very alone especially when a day after I was discharged from hospital I said to my eldest daughter 'I know you're my daughter but which one are you' so please do remember that Meningitis Now has a 24/7 helpline if you're in the UK and they are brilliant, you can post here any time and you will pretty much always get a reply and if you wanted to contact me as someone who has been through this then please feel free to IM me on here. Good luck, Jonathan

[StrawberryCream in reply to Jonad724]

Jonad your response is great. Nothing to add Ami other than just to re reassure you that it is as everyone is saying and takes time and rest to recover from as it is much more serious than flu. Several weeks to many months rather than days and sometimes with longer term effects.

[Hidden in reply to Jonad724]

Jonad your response lightened my heart! I have vm for the second year in a row and am heartbroken with my treatment in hospital this year. Viral meningitis is a very cruel and misunderstood illness but my friends family and teachers are understanding and luckily my GP. this is my first week after seven where I can read without getting headaches but unfortunately my energy levels are awful. Ami, Recovery time may be long but plenty of rest (I know it's hard and annoying to hear but rest and sleep is so important!!!) and we will get better! It's horrible to know that so many people suffer with this but comforting in that none of us are alone... We will battle these headaches and fatigue and photophobia and whatever we may have. I hope you get better real soon x

[Bonkitty]

Hi Ami,

I had VM in March 2014 and I am only just feeling ok over the past couple of weeks. I had constant crushing head pain for all that time which worsened if I watched TV, listened to music / noise, had a conversation, concentrated eg reading, driving etc. I have had to completely rest my body and brain. Trying to push through it made things much worse. I refrained from calling the pain "headache" as it was not that kind of headache. I felt as if a caterpillar was crawling over my brain and then the membranes would feel as if they were in spasm giving me a terrible head pain. I refused usual painkillers as they had no effect and cause further problems. I take 20mg Amitriptyline, this helps relaxation and sleep as well as neurological pain.

I also take a teaspoon of virgin coconut oil in hot water as this is good for brain injuries. I take a fish oil and multivitamins and minerals. I drink green juice made from curly kale, cucumber, celery, carrot or pear and fresh ginger. I swear by the above as I am now feeling good benefits for taking them.

Ther is no quick fix, rest and time are the answer.

I am aiming to return to work in April and at one time I thought that would be impossible so keep positive.

I have been so happy this week because I can listen to music again and read for a short time. I am back to walking my dog and I am going to start gentle exercise.

Rest up and take each day at a time. A couple of weeks is early days yet. You will ache as your whole nervous system has been sensitised but it will gradually get better.

X

[Claudeminh]

Hi yes all the above answers were similiar to my VM experience. I think it took me three months before I could exercise much. Its just over two years now and I am a lot better but struggling with chronic migraines, but even they have been controlled 95 percent of the time. Im still fragile and lack endurance, but I can pretty much do anything I need to do. So couple of weeks out of hospital is scary as, but stay calm, it will improve. We are here for you if you need reassurance too.

[Jcrome]

Hi there,

Sorry to hear about your VM. I had VM at the end of July 2014 and I can totally relate. For me the first 2 or 3 weeks were awful, but then I started to do too much (gardening, work etc) and had a big relapse which I think set me back considerably. Every month I would start to improve, then as I increased my activities I would go downhill again. So it's really really important you take things slow, and even on brighter days that you stop yourself from doing too much - whether thats looking at a screen, doing things around the house, exercising etc.

I also have had more emotional times, something I wasn't used to before. I think partly it's the VM and partly the scariness of not knowing what the recovery ahead is like.

Everyone is different but it took me 5 months to go back to work, I'm now back part time and on a gentle walk-jog exercise programme. Headaches and fatigue are reduced but still present at times and I do still have bad days so take it easy on yourself and show some of these responses to your family to give them an idea of what you need to do.

Keep in touch, all the best. x

[NorthLeedsJohnny]

I too had VM in, Nov 11. My symptoms were just as you describe. The advice given by Jonad is spot on. Re the hearing, mine too was reduced in my left ear. A couple of visits to audiologists resulted in me being told that the loss is permanent and probably brought about by damage to my auditory nerve caused by oxygen starvation when the pressure in my cs fluid was at its worst.

All the best for the future

[NorthLeedsJohnny]

I should add that my consultant was very surprised to hear that I was back at work 3 months after the illness. He expected that I would be unable to work for several months more! That said, he had told me in hospital that I had unfortunately contracted a very severe strain of the virus. On reflection, I probably should have stayed off for quite a bit longer than I did!

[chrisdunn]

Rest, rest and more rest!! You are now on a long road to recovery. Be under no illusion just how ill you have been. Do not rush and don't worry if you fall asleep in front of the TV!! But as you can see on here you will get better but you will be a different person. You will see life from a slightly different perspective. You are going to have good days and more than likely some pretty bad ones. The depression/anxiety caught me off guard so be ready for that. if you work don't rush back and if you can have as much time. I went back after 5 weeks which wasn't enough. I have a blog which if you read through may help you a little. There is lots of help both on here and Meningitis Now. I only contacted them once when things got difficult and it made a difference to speak with someone who understood. bumpyhighway.blogspot.co.uk...

[Hidden]

Mine are permanent. I wish you all the best.

[Deirdreoc]

Hi Ami

I had VM in August. I was very sick for 1-2 weeks before they found out what was wrong with me. I've only started to feel normal for the last month. I agree with all the other posts rest rest rest. Even if you are tempted to do normal activities don't just rest some more. I think the desire to be "well" made me worse as I kept trying to go back to work.

I wish you a speedy recovery but for the moments when it gets you down use this website. I was so glad that I eventually found it and reading others posts helped me understand this terrible illness. Xx

[Hidden]

Hi,

I've now had viral Meningitis 3 times in the last four years.

I have what is called "Mollarets" Meningitis where I can get recurring bouts of the disease.

Each time I am taken ill I have had to spend two weeks in hospital on IV anti-virals.

The first time I was ill, I also had encephalitis which caused some nerve damage which has left me with

a weak left arm, my dominant arm, and speech problems.

I also have permanent head pains which, so far, the medics have been unable to treat.

They have tried numerous treatments, including acupuncture, which did give some brief relief.

I just go from day to day hoping not to become ill again.