I have been in hospital for 6 weeks with viral/bacterial meningitis and have been home 10 days - will the pain in my head ever end ?

[Paula_101]

I know maybe I am expecting too much too soon, but I cannot believe how lifeless I feel since I have come home from hospital. I had had a couple of relapses while in the hospital and spent most of the six weeks on drips and strong medication. I find now that I am home I seem to have a constant pain on the left side of my head, all down my neck and back, this is made worse whenever I try and walk no matter how short the distance. I just want to know that this will eventually ease and is there anything I can do to help myself - thank you

[cveks]

I was in same situation 2 years ago . Got viral meningoencephalitis on vacation in Greece.

Pain will go away and gradually it will be better.

What is most important for you is to listen to your body and REST, you need to rest at least 6 months, dont work anything just rest, sleep a lot and take a walks . Your body will tell you when you are ready and recovered . You need to understand that you had very serious sickness , which takes years to heal . Because of that you need to discipline yourself . Avoid at all costs other people, to protect yourself from viruses , because your immune system is now in very bad condition, it still fights virus and it will take some time to get back to normal. This recovery will change your lifestyle drastically so you need to accept all that with positive view on whole thing. Dont fall into depressions like many do, look on that from positive side. You and me are lucky to be alive .

You can help yourself by asking or finding someone to massage you, that helped alot to me to feel better, and you need to take special kind of diet. Drink only water and teas like green tea, eat lot of fruits and vegetables and avoid junk food and sugar based food at all costs. Sugar suppress your immune system makes things worse. Just take fruits and you will get fruit sugar instead.

For first year I had flu-like symptoms almost every day , because virus was and is still in my body. Gradually immune system will weaken and defeat virus, and heal the damage but you need to help him in that fight with your resting, not working, and lot of healthy diet and walks in nature.

All the best and head up!

[Paula_101 in reply to cveks]

Thank you so very much for your reply and I must admit you have certainly made me realise how lucky I am.

I will take heed of all of your very valuable advice. I love walking and the worst part for me at the moment is walking up and down stairs, as I live in an old Victorian house which was converted into flats and yes I am the crazy lady who lives at the top, so I have 40 stairs to contend with, I have been trying to take my two little dogs out to the park which is very very close and it has been a struggle. I used to think these stairs were great exercise but now I look upon them as a curse but also a challenge.

Again thank you so much for your very helpful reply

[cveks in reply to Paula_101]

Make sure that you go into nature a lot. For me especially beneficial was Mountain resting. When I go to nearest mountain , where I have vacation house, I feel like 2 times better with more energy. Avoid big cities, pollution of car exhaust and especially tobacco smoke. Tobacco smoke made me to feel weaken and causes to me to have headaches.

Also make sure that you avoid loud music, and sunlight because you will be sound and photo sensitive at least for the next few months.

[ShannanLouise]

I agree with Peter. I had bacterial meningitis 15 months ago and am still in severe pain with my poor head. REST is vital. I am still not able to deal with radio, music or tv. I can only see people if they remain calm and quiet - I can't deal with loud voices or sudden sounds. The sunlight is impossible for me - I'm ok with the bright sun now (for the first 9 months I had to live all the time with the curtains closed as I couldn't bear any light) but the direct sun hitting my head sends the pain shooting up instantly.

Some things that I found relaxing and helpful are;

ice-packs or an ice-cap

chamomile tea

avoiding any inflammatory foods (potatoes, tomatoes, peppers, aubergines....)

drinking coffee (which I never normally do, but one cup of good quality fresh coffee - not instant - helps

massage (but not on the head or top of neck)

High Flow oxygen (prescribed only by your doctor) helped me for a couple of months but the pain worsened again

sniffing eucalyptus oil. (Some people find peppermint oil helpful, but I personally don't like it)

We're all different and of course some of us had viral as opposed to the bacterial strain (unfortunately not only did I get the bacterial strain, but I then contracted pneumonia and pleurisy because my immune system was fully occupied fighting the meningitis).

Take it very slowly and carefully and keep quiet and calm. Don't let things upset or worry you. I couldn't even read for the first 9 months, but if you're ok with that, then read and lie quietly. An eye-mask can help - I still use one. Get early nights. Focus on being positive and seeing the good things that you're slowly able to do again. I know it's hard, but try not to think about the things that you can't do - if you allow yourself to heal, you'll eventually be able to return to your 'old' life. (But I doubt you'll be quite the same - a life-threatening illness like this will for sure change your attitude to life and to others). Be kind to yourself - don't blame your body or your head for this and try not to get angry with yourself. Your body wants to be well and is going to do it's best to get you well. So do your best to help it.

I send you my love and thoughts and to all of the other sufferers who might read this too. It is very hard for us all, but we will get well.

Shan x

[cveks in reply to ShannanLouise]

Bacterial meningitis creates more damage than viral . Thats why everything I sad applies for you as well - even more.

Rest, rest , rest - healthy diet and avoid stress and viruses at all costs.

Thats all we can do and what we must do to recover.

[ShannanLouise in reply to cveks]

Thank you Peter. Yes - bacterial is more damaging and it's taking me a terribly long time to recover. I am never out of pain but I'm incredibly lucky to have an absolutely wonderfully caring husband, Max, and my friends and family have been just fantastic. We're fortunate enough to live in a 16th century cottage full of massive oak beams, inglenook fireplace, clay-tiled floors and stone walls. I really think that being surrounded by so much natural products must be helping. Modern buildings and furnishings let off toxins that are very damaging when one has been so seriously ill. We live 2 miles off-road so there's no pollution and no noise - our nearest neighbour is 2 miles away. In this I'm very lucky as you're right - keeping away from pollution, cigarette smoke, noise, bright lights etc is essential for healing. I'm so pleased that it sounds as thought you're recovering - your mountain home sounds lovely.

[Paula_101 in reply to ShannanLouise]

Hi Shannon and thank you so much for your very helpful and informative reply, I was beginning to think I was going crazy with the painful heads etc and feeling so unwell all the time. I too also contracted pleurisy in hospital which caused me to have a relapse and set my head off big time, I was beginning to think that this nightmare was never going to end.

As I put in my reply to Peter, I have a lot of stairs up to my flat which I always thought was great exercise now l look upon them as a curse, because when I attempt to walk up and down them it shoots such a pain around my back, neck and head. I ventured out on Saturday and like you when the sun hit my head it was like fireworks going off and I had to go straight back indoors again.

Again Shannon thank you so much for your wonderful reply and I will take heed of your advice and will start listening to my poor body big time!!

With love and best wishes to you and all other sufferers too

Paula x

[ShannanLouise in reply to Paula_101]

Hi Paula, What a shame you have to face those stairs, but even that fact that you're able to get out of the house is wonderful. It was 9 months before I was well enough to do that, so you really are doing well and mustn't get downhearted. As Peter mentioned, viral is less severe than bacterial, so take heart from that - you could be much worse and you are doing marvellously. Keep encouraging yourself, do as much as you can, but REST REST REST... And be sure to eat very healthily, drink lots and lots of water (hydrating the body hydrates the brain which is essential). Occasionally take one of the rehydrate powders you can buy from any chemist. They put back electrolytes etc that you may be short of - they can do no harm and may help you feel better. Another good thing that I tried and found helpful is swimming. I'm Australian and am really keen on swimming (I swim almost every day when I'm well in a lovely outdoor Olympic pool). I find that floating in the pool eases the pain in my head as it takes all the weight. It might be worth you trying that (or even trying floating your head in a coolish bath. If you're anything like me, you can't bear any heat on your head. Because of ongoing brain inflammation (my meningitis ended up turning into encephalitis) I sleep with icepacks around my head (my poor husband has to get up and down in the night to replace them) Perhaps try that? And if you find anything else that helps, do let the rest of us know!!!

Kindest of regards,

Shannan x

[Vespalover]

I was in hospital for with VM caused by the Shingles virus. I had shingles on my right upper quadrant and within 5 days it was in my meningis. I spent 6 months at home convalecing almost bedridden. it is 2 years later and I am going for a bike ride!

here's what helped:

Drink tons of water to flush the virus and to keep the menigis fluid up.

Eye visor for sleeping (still wear it)

No alchol (tried but even 1/2 beer made me sick for 2 days)

Good sunglasses

Naps

No over stimulation eg. Action movies, crying babies, emotional upset, scrolling on computer

Eat healthy...makes you feel healthy even if you feel like cr..p

Good luck with those stairs. Remember when your head hurts it is telling you to slow up. You will get better.

Ana

[stevie1961]

2 1/2 years post bm myself and it's a slow progress but progress. Can't add anything but agree with all the other replies. We are all lucky to have come through this. Accepting it's a slow recovery helps even if it's frustrating. I I'm up to about 95 percent better. Nearly there. Good luck

[Paula_101 in reply to stevie1961]

Thank you Stevie, for your message and what a lesson I am learning!!!

I am so glad to hear that you have made such great progress and again

thank you x

[Paula_101]

Hi Ana

Thank you for your very kind message and very helpful advice. This has all been such an eye opener for me and to receive replies back with advice has been so helpful and reassuring to know that things will get better - I think the biggest lesson I have learnt is patience and time with rest will help heal

I must admit my eye-mask has certainly become my best friend!! and I find myself falling asleep before I know it.

Again many many thanks Ana and it is good to know that you are now able to go out and enjoy a bike ride especially in this beautiful weather.

Paula x

[cveks]

2 years after I am almost good as before. Almost. I have sometimes slight headaches at the back of my head, sometimes from left and sometimes from right side . Sometimes I feel slight weakness in my arms and I read that is post viral syndrome. I had for almost two year lymph nodes burning sensation from time to time. Now its much much better than it was. I even skied 25 days this winter ( I am passionate skier) .

As I can see I am 95% as before . I still have problems with certain situations . I still have less tolerance for meetings with dozen of people talking all loudly in same room , I feel bad in rooms full of tobacco smoke , and I have slight recurring headaches when I drive car for more than 1 hour .

Generally I feel good I got little baby girl in last September and me and my wife are expecting another child to be born in December.

I wish you all the best, and want to tell you again, avoid alcohol, cigarettes , sugar , live healthy and rest a lot with at least one nap daily , and most important - dont rush thing and listen to your body.

When you feel bad after doing certain things, that is your body giving you signal that it cant tolerate that level of stress which you are putting on it.

All the best from Serbia.