Second bound of viral meningitis

[Christina91]

April last year I was hospitalised for one week with viral meningitis, I suffered quite horribly with my mental health afterwards and I have yet to receive any help via my GP. I am still struggling now, I don't recognize the person I am anymore.

Cut a long story straight I am now recovering from my second spell of VM and I'm at my wit's end!! I do everything by the book to look after my health, i.e multivitamins, stay fit, eat healthy balanced diet, don't smoke, hardly drink alcohol and sleep as much as a can (I have a two year old). It's so desperate now to feel just that little bit better. I can't run anymore because my head throbs after 10 minutes and then I'm hit with chronic fatigue for days after. I don't know what I can do anymore? Anyone got any advice? I'd be very appreciative.

[Jonad724]

I am 18 years post near fatal VM and I'm also a community ambassador for Meningitis Now so I hope my experience can help. First and foremost VM is not a 'mild' version of meningitis in the same way that breaking your leg in one place is better than two.

Recovery from VM can take a long time I'm afraid, I was (still am) a triathlete and I had to have 5 years away from intensive sport (so anything other than walking) to allow the illness and after effects to settle down. Recovery is an intensely individual thing though I'm afraid but recurring VM within 12 months could be because you're overdoing things? With a two year old you have your hands full anyway so anything over and above that is going to be a challenge. One thing I did was to keep a bullet point diary of what I had done each day, what I had eaten and how tired I felt. You'd be surprised if you do that where you can spot patterns. Unfortunately no matter how 'good' you are VM does take a long time to recover from I'm afraid and really 12 months with a youngster and all that entails means you may not be resting as much as you should to help your recovery. The maxim with VM recovery in my experience is rest, rest and rest and when you've done resting then rest some more.

It's not helped by GPs not knowing much about VM and even in some cases thinking it is no worse than flu, mine told me that I was better after three weeks even though the presenting symptoms contradicted him. I was even discharged the day after almost dying because 'it's viral meningitis and that's never serious' but was rushed back in three days later and in the ambulance I remember the paramedic saying 'you'd better put in the lights and noise on Dave, we're losing him'.

If you continue to have recurrent attacks then it could be you have recurrent aseptic viral meningitis or Mollaret's as it's also known but it's a bit early to say really, it took 8 years for my diagnosis of Mollaret's to be diagnosed.

Probably a bit early for that and in the scheme of things 12 months or so is still quite early in your recovery but there is light at the end of tunnel. in 2010 I completed my first half ironman and did more after that, I have also run half marathons and completed numerous triathlons including long course weekend in Wales last year.

If I can help at all though please do feel free to PM me and I will happily share my email address with you. Take care, Jonathan

[Christina91 in reply to Jonad724]

Thank you Jonathan for sharing your experience with it. It's just so debilitating in general. I'm also a dental nurse and perhaps your right, I could well be over doing it. I tell people how I feel and they just don't seem to understand and tell me to pull myself together it's just "another episode" I really don't think people understand the bigger picture. My relationship broke down because I was so severally depressed after VM last year, and I don't blame him. I struggle to cope with everyday tasks, Im not interested in anything, nothing really makes me happy anymore. This is what I mean by I'm just a completely different person.

I've told the doctor's and they just want to keep giving me pills. It's quite sad how very little they know about the illness.

But I will certainly give the diary a go, that's worth a shot

Thanks again, really grateful

Christina

[Jonad724 in reply to Christina91]

I think the key thing is Christina, that you are not alone and what you're experiencing is very common. I had debilitating depression and suicidal thoughts after VM, I couldn't act on them because I couldn't go anywhere, fortunately. It does sound like you are doing too much as well but then that's common when doctors tell you it's not a serious illness, they get very upset by the way when you argue with them even if you know you're right.

I wrote a serious of blog posts about my experience of recovery, if you're interested they are here: healthunlocked.com/user/Jon...

If you are depressed though pills are not necessarily the demon, they can ease the symptoms and help you towards recovery but it is a personal choice of course. Depression is self fulfilling and you may need something to break the circle though.

You can also find help and support, including the Meningitis Now helpline here: meningitisnow.org/how-we-he... but as I said you are not alone and there are several hundred people in this community who know exactly what you're going through.

Take care, Jonathan

[Prudence67]

Hi, I was hospitalised twice with VM in Aug & Oct 18. Like you I live a healthy lifestyle, no alcohol etc. Only recently have I been able to enjoy yoga, finally doing downward dog which I thought I’d never achieve! Walk my dogs without my head thumping after 10 minutes. I also experienced the horrid aftermath of exerting my body which lasted days, as if my body was telling me too much to soon. It’s time that heals and listening to your body, be kind to yourself and help your body to get better. I know it’s frustrating but understand what your poor body has been through, it’s an awful illness which has no external symptoms for people to see and understand.

[Sunny308]

Hello Christina have you tried taking lysine and Red marine algae they are anti virals. Natural remedies from a health food store could help as a preventive

[Cbk6660]

Hi Christina,

I’ve had VM 4 times. I have Mollaret and Pernicious anemia. Took a long time to get things sorted out. Ask your Doctor to check your B12 levels. I have to do B12 shots once a week and I’ve found that as long as I keep my B12 levels up I do wonderful. If I forget a shot my body tells me within a week. My first VM episode was in 2005 and then had recurring every year in the spring for 3 more years until we figured it out. So far no more hospital stays

[Reyjay94]

I'm so sorry to hear about your relationship that's what I scared of too I'm finding all the negative instead of the positive and I keep thinking if he cant stand it hes not the one someone will go through anything with you and stick with you if there mean to be , I went for a walk to the shop yesterday I was out literally wo minutes I come back I felt like I had ran a marion I feel like its taken my identity I'm so angry that its happened but if its gonna keep on happening these effects we just have to work our life around it make it more positive the best we can

[Mimilondon]

Hi there,

I am so sorry to hear that and can relate a lot. At this present time I have good and bad days but my mobility is up and down.

I have tried to see the positive in my recovery as I try and remember there are worse people with health issues and I have a great family to be strong for.

This disease is hard to explain to people who hasn’t been through this as they only see the outer shell and can’t feel what’s going on inside.

It’s hard now due to Covid as I’ve had no follow up appointments so I have to it upon myself to stretch daily and 20 mins low impact exercise and it does help. I have learnt to listen to my body as each day is different so if I can’t do it I will rest and try not to think about it.

It does feel u will never be the same and by admitting I’m not the same at this moment has helped my mental health and the panic attacks x

Emma

[Christine86]

Hi Christina,

So sorry to hear! And i can’t imagine doing this with a 2 year old! I thought it was hard enough with my boyfriend in the house. Its so hard that nobody really understands that your left with not only a braindamage but also with bad health! Your Immuunsystem is exhausted and taking All the sumplements incl lysine en b12 shots (if you need them, i did) . I Had vm in 2015 and i have my life back, a different one, but i am so happy i am her now and hope to just keep going up. Please be so so kind for self! I kept on pushing myself it took me 2,5 years to really understand. Hope you can get good help!! And whatever you do don’t go back to work: first get threw a month feeling kind of oke! Oh and last thing... I take low naltrexone and really it changed my life because my eye pain and headache got better! Maybe your husband or family can help you look in to all the tips people give!

[Aiwa]

Dear christine, this is a very serious illness and the more you give your brain a chance to heal the better. Be gentle with yourself and gdt help with childcare if you can. Treat it like a brain injury and rest lots to give your body a chance to heal. Best of luck, hang in there.