Fed up!

[CCat23]

I am just wondering, my partner had viral meningitis at the end of last year and has had a form permanent brain damage since, he is still fit and healthy just with a constant headache that his pain killers don't even touch and there is no known medicine to help yet, we have mostly been carrying on as normal but we are getting more and more stressed and arguing more and more, I was just wondering if anyone else was feeling fed up with arguing etc with their partner and if anyone has any suggestions to help.

Thanks

[Jonad724]

Speaking as a 10 year survivor of viral meningitis what you're going through is very common and if you look at the posts in the 'I had viral meningitis Facebook group' facebook.com/pages/I-had-Vi... you'll see that you are very much not alone.

A constant headace after VM is pretty common as well and I've had one for over 10 years now but you do get to live with it. As my neurologist explained to me, painkillers only work for three days or so after that your brain stops releasing its own pain relievers and you need more painkillers to do the same job so it feels like they're not working anymore.

Some people find that Amitryptaline helps so maybe he needs to see his GP and ask whether its possible to have a course of these which are taken at night. I'm not a medical expert its just information I have picked up along the way. Your partner is still in the very early stages of recovery as it takes some time to get over VM although most GP's will tell you that you're ill for a couple of weeks and then you get over it principally because they have never treated someone with VM.

I can understand why it is stressful because VM changes things and you have no control over it and to be honest I had stages of being bloody angry about it which doesn't help in any relationship. I even wrote about it in my blog post here:

meningitis.healthunlocked.c...

Living with a constant headace takes some getting used to but the key is not to ignore it or fight it when it gets worse because that in my experience makes me really crabby and argumentative. If it gets worse the only thing he can do is rest and I do know how frustrating that is but it does help. The headache can also leave to over-whelming tiredness which again doesn't help with coping with stress especially when you try to keep going without stopping. The natural urge is to ignore it and behave like 'normal' but it doesn't work like that, well not for me anyway, you just have to adapt to what 'normal' is. It took me a long time to do that but once you do and dealing with the headache becomes routine then it improves after that.

As I say trying to continue as if things were the same before VM proved to be a daft idea for me as I can't do the things I used to do or if I can it takes a whole lot longer but I think there is light at the tunnel if you look at how you can both change things to adpat to the headache. I wish you all the best with this but please feel free to message me directly through this site if you'd like to as I'm more than happy to share my experience if it would help. I also write a regular blog about being a VM survivor so please do have a look at that and see if it helps as well. Best wishes, Jonathan

[CCat23]

Thank you very much for your response, I will be sure to share it with my partner and we will find the best way to adapt!

Kind regards,

CCat23

[Tiga]

the down side is pain killers can make headaches worse, I found using vic or peppermint oil on my temples helped, and change of diet,

yes for the person who has not had VM, it is just as hard, I found myself, been rude, and angry which is one of the side effects, I always say, if we had a car crash and our face was full of scares, people would understand a little more, but as we show we look it, it is so hard, to people to understand, which in no way is their fault

you say "we have mostly been carrying on as normal but we are getting more and more stressed and arguing more "

you cannot carry on as normal, things have changed, that is the cruel fact, of this illness, may be a safety word may help I use FROG haaaaaaaaa I say this when I see my mom, so she knows I am feeling well lets be honest, like a cow, angry and just want to lash out, this helps her a little, so she has a little warning what's going on.

stress is a factor, the VM person is scared that it will come back, scared that they will never be normal again, I have been vm free for over 12 months, and I still cannot hold my feelings, so I started taking, calms (Holland and Barrett) and Bb B12, this helps with moods swings.

do not carry on as normal, talk, or if you cannot talk, find someone you can both talk to, by your letter you care, but its all to much, this I can understand, talk read forums, read everything, try and see if calms, or quitelife will help, change diet, and DO NOT allow the white elephant in the room, take over your life, remember vm people feel frighten, angry, lost, we know things have changed and it frightens us.

you are been a great partner by been on this blog, lets hope you find your path again.

you can also have had a look on Google for you, but you can call the meningitis hot line which is 24 hour

Freephone UK number:

0808 80 10 388*

Freephone Republic of Ireland:

1800 523 196

nurse-led helpline is available 24 hours per day, 365 days of the year

[hannah88]

hi i had bm on number of occasions and untreated csf leak i suffered with agonising headaches for about 15 years due to the re-occuring meningitis and the leak it was a drag i was 5 when it started and couldn't see an end, one day i broke down infront of the chemist the same one i've had all the years and he said due to all my medicine i was on there was little more i could take, except i could try one thing 4 head rub, you place it on when you feel the headache coming on and it worked within mins for me, takes a bit longer if headaches there and bad but no more than 10 mins, however only the 4 head stick works for me, the pad type ones don't.

when my cousin fell ill will bm last christmas and he was in agony and no pain relief was working i had that much faith in it i suggested it was tried on him and it also worked with his headache whilst he had bm however the pads also worked for him

hope this helps

[CCat23]

Thank you very much, he has tried the rub but not pads I will suggest those to him. That's great thank you.