Going about life normally

Hey everyone,

Im sure I cant be the only one who does this …but is there anyone out there that still does every day things despite feeling like death? How do you guys cope with feeling like this all the time? This is still new for me about 7weeks & my symptoms are off balance, headaches, tingling & numbness in head face and back, I feel drunk all the time, I get dizzy when moving my head around or even rolling over in bed, shimmering vision, always feel out of it…holy this sh*t is crazy! For those of you that hold down jobs, how do you do it? I guess I just need some re assurance cause right now I feel like this is never gunna end!

Hi, I know how u feel, when im getting ready for work in the mornings I always think that I’m not going to make it through the day, I feel a lot of anxiety in the mornings because I just don’t know how my day is going to go. That being said I’ve had this episode of mav since June 2011 and haven’t had one day off work! I feel like if I give in then it has won and if I can just get through the day then at least I can feel like the day was worthwhile because I will have symptoms whether I’m in work or sitting at home anyway. Sometimes in work I sit and think about the fact that my colleagues have no idea how I’m feeling, they talk to me and I have a conversation with them but all the while I feel like I’m on a boat but they never know that. I gave told them I’m I’ll but I always say unless u have this illness u will never know what it feels like, it’s far to severe to imagine!

Thanks for your reply! Im sorry youre dealing with this also. If you dont mind me asing, what kind of work do you do? I want to know cause im trying to find a job and would like to know how others with MAV do while working. And yes I def hear you about people not understanding. By the way are you on any meds? & do you knowwhat caused your mav? I hope you feel better soon!

Hi i’m a teacher, i like the fact that i am always on the move around the classroom because i dont feel the false sense of movement as much as when i am sitting still ,for example when im having my lunch at work i dont feel too good or when im on the computer. I dont really know what has caused the mav, my neuro has just said that i have some sort of migraine condition and doesnt refer to it as mav but i suppose its the same thing. I started topamax in nov when i was probably at my worst and it didnt help however due to side effects i stopped it in dec, i then started nortriptyline and have got up to 50mg after 5 weeks and have stayed on it for about 4/5 months, i have some definite improvement, i dont feel half as bad as i used to but im still not 100% so i hope that i will continue to improve. I also take magnesium, B2, Coenzyme Q10 and as fish oil supplement.

Depends how sick I am Gina. Sometimes I’m housebound and there’s no option to ‘fight through’ but it’s surprising when you live alone how much you actually can force yourself to do just because you have to.

I don’t believe in pushing yourself hard when you feel like death. It’s not good for the recovery process. But, once symptoms are in the mid/mild category I think you do just have to get on with it and fake it till you make it. But still don’t go hell for leather.

The key point here is that for the vast majority of sufferers things DO get better. Maybe not perfect but not rotten all the time. Hang in there!

there are some of us who are able to carry on a normal life, but I certainly don’t judge those who haven’t been able to carry on working.

I have been to hell and back, and it is just sheer stubborness at times that has kept me in work. There I have been times I have “nipped to the loo” in meetings just to have 5 minutes cry because I feel so ill. Or stood at the bottom of the stairs at work uncertain whether I could actually make it to the top. Training courses where “we’re all going to stand for the day”…

The hardest thing for me has been the effect on my memory, caused by both the vertigo and the meds I used to be clever now I hardly know my own name. I have 150 people who work for me and I can’t let them see the internal battle I go through every minute just to remember what I’m even talking about :lol:

Before my diagnosis and medication I was ready to step off my life, I truly didn’t believe I could keep going, physically or mentally. I am pretty strong but even I wasn’t strong enough to fight that for the rest of my life.
But I have found meds that are working (or they were anyway) and things are better, I’ve had a promotion, am back on the ladder and will beat it.
But not everyone will find meds that stabilise the illness enough for them to carry on working, and it is just as important to accept that and not try and fight it, because this is one illness that from my experience stress definitely makes worse.

Anyway, to cut a long story short you will find a way to live your life, it will just be that your life will be different

xxxx