Viral Meningitis

[HickeyG]

Hi, I'm 4 months into my viral meningitis journey and seem to be really struggling with a few lingering symptoms. I have daily headaches which vary in severity but my main issue is the nausea and sickness and lack of appetite. For a good 3 months now I am finding it so difficult to eat as I have no appetite, and every time I think about eating it makes me feel really nauseous. When I do manage to eat I can only eat the smallest amount before feeling really full. Is this normal? Is anyone else suffering the same?

[Jonad724]

I had near fatal VM in 2002 and now I'm privileged to be a volunteer community ambassador for Meningitis Now so I hope I can help. I am though talking from personal experience rather than via medical qualification.

VM, like all forms of meningitis, affects the brain and is often seen as the 'mild' version of the illness although those who have had it, definitely know otherwise. it's difficult to predict what the impact on your brain the disease has caused so it is entirely feasible that your lack of appetite is down to the illness. I have an acquired brain injury which affects my metabolism and i have developed several intolerances as a result, things like cocoa, alcohol, phenylalanine (which is found in diet and sports drinks) nuts, caffeine and coconut.

When I was in the acute stage of VM I felt sick, and thinking about certain foods was enough to start me off. The last meal I had before waking up in hospital two days later was nut roast. Even as I type this, thinking about nut roast makes me feel queasy. My appetite did come back slowly, and I like you I had a permanent headache which varies in intensity, in fact I still do but it's amazing what you learn to live with.

What worked for me was eating little and often, rather than 3 meals a day. I was having small snacks and just eating what I felt like having. Your brain and your body have gone through a trauma and so try to work with how you feel and it may mean adjusting what 'normal' means to you. Rest is vitally important in recovering from VM and if you are trying to do too much too soon that would also reduce your appetite, you're literally sick and tired.

Hope this helps but please do feel free to PM me if it would help, I can arrange with Meningitis Now to provide peer support if you need it. I also wrote some blog posts about my experiences of recovering from VM, just click on my profile and then click on 'posts' and I hope these help. Take care and good luck with your recovery.

[HickeyG in reply to Jonad724]

Hi Jonad,

I had actually read some of your comments on other people's posts and was hoping you'd respond to me, so thank you for doing so.

You're so right about the healthcare professionals playing it down, all I kept getting told was that the symptoms are usually mild and I'll be on the mend within a week. It makes you question yourself and whether you're just being a hypochondriac. I feel so much better for reading your response and to know that my symptoms are normal is very reassuring. I do have one quick question though if that's ok; we found out that the virus that caused my VM was the Human Herpes Virus (HHV-7). I've done some research and found out that I could've had antivirals for it. Considering I'm now 4 months in do you think they would help at this point?

Again, thank you so much for responding and I may have to take you up on the offer of peer support.

[Jonad724 in reply to HickeyG]

Thank you for your kind words, and please do take me up on the peer support if you need to. I am determined that no one else should not have to go through the struggles that I did and I was delighted when Meningitis Now invited me to be a volunteer community ambassador.

With anti virals, I'm really sorry I don't know, I didn't have anti virals in hospital as they didn't really exist then and if they did I doubt if the hospital would have used them. They discharged me just over a day after almost dying of VM and this was their assessment rather than mine. The criteria they used is that I could stand up without falling over, not sure they meant with two nurses holding me up by hey, details details!

With the doctors, unfortunately you might have to get assertive with them. My GP was convinced that because it was VM that I was better after 3 weeks even though I could barely walk and string a sentence together. In fact he said I was 'malingering' to avoid going back to work. In the end I asked him how many patients with VM he had treated, after much bluff and bluster he admitted it was none but 'this is what the medical books say'. Strange to say, VM doesn't read the same books. I would ask your GP about anti-virals and if they give you the usual, you're better, then mention this forum and ask them to post their knowledge of the disease here and see what reaction they get!

Take care, Jonathan

[vloaiza09]

Hello,

Like Jonad said it’s difficult to predict how meningitis impacts us on the long run…

For me lingering headaches with vertigo was something that eventually went away, took months. I was also feeling full after only a few bites, some acid reflux as well. I have great doctors who listened to my issues with no judgement and I had a lot of issues! My PCP suggested a gastric emptying study. Sure enough I developed gastroparesis. It looks like my meningitis/encephalitis affected my vagus nerve so now I have slow motility when it comes to digesting food. In short, it causes you to be full fast, nauseous if you eat certain foods or if you eat too much, etc. maybe it’s something you should be checked for.

I know it’s hard to hear but really time will heal you!! I heard that so many times when I was recovering and while it can be frustrating to hear that. It is so true, I am about 4 years away since my illness and Happy to say I finally feel so much better. I still have other medical conditions but I have learned to live with them and I pray you find the peace and recovery as well.

[HickeyG in reply to vloaiza09]

Hi vloaiza09,

Thank you so much for responding, I really appreciate it. I actually spoke to someone from Meningitis Now and she told me the exact same thing you have about resting and the fact that time will heal. I do find it so strange though that I seem to have days where I don't feel too bad at all, and then other days where I can barely move. As you've said the nature of the illness makes it so unpredictable, I just wish I'd been told that from the start.

Thank you for your kind words. Here's to a happy and healthy 2024!

[C-Northerner]

I had a similar experience when I was taking neproxen for the head pain, even the one with the protective coating was making me extremely nauseous. Not sure if you are taking anything for your head - sharing just in case.