After a good few weeks last month Im now back in hell with a crash of symptoms!
Its built up all week and hit yesterday with mini spins the floor moving and marshmellow legs its so frightening and scary when you think your getting worse and worse! There dosent seem to be a reason apart from stress this week I just feel like my head is going to explode!
I wake up and my eyes feel funny aswell head pressure all the fun stuff etc
Is it possible to just get worse and worse I cried yesterday like a baby said I cant go on anymore I know I will but its so hard some days I dont know how I get through it .
I wont let myself get housebound but I feel like thats how Im going after this week but I wont wont let it happen!!
It just dosent seem fair when I see my 76 year old nan now in better health than me and Im 23 how is that fair ?!
I F*****g hate life at the moment . Well Im off to london in two days see what nasties Ive got in store there and my diagnosis .
Sorry guys that had to come out , have a good wkend .
So sorry to hear the wheels have fallen off for you. That sucks. Big time. No need to apologise for the rant though - this condition is so so awful that I don’t think there’s a person on this board who hasn’t had a meltdown at some point. It is very dispiriting when you just feel worse and worse, you think you’ve hit the bottom but no, it just gets worse . At my darkest I’ve wondered how I could feel any worse without actually dying! The good news is you CAN get better. I have off patches here and there but I’m about 95+% all the time now. After being so bad I was house bound for weeks. So hang in there Blondie!
Just to echo what Victoria says about how things CAN turn around even when it seems they never will. I can’t say I’m anywhere near 95% better most of the time but I can say that for me, even without meds, time brings relief and improvement back to baseline. I thought I’d had it the last few months, imagined I’d got to a place from which there was no coming back but I’ve emerged again ready to fight another day! For me personally, it’s like that sometimes with MAV. All the best for your appointment in London. I’m in the UK too.
Thanks guys do either of you take any meds victoria? Brenda? It just amazes me after being 90% Im down to 50% in the space of 7-8 days and getting worse each day! I dont know why and I dont understand it.
Im looking forward to next week and seeing the answers I get just getting some help may help me cope better.
Just hang in there. THIS WILL GET BETTER. Everyone here’s been there and thought this is it, I’m stuck here. But it will go away.
I hope the London thing will help psychologically too as it will make you realise you are not alone in this.
By the way I find Clonazepam 0.5mg helps me through the worst patches. I don’t take it in between bad bouts at all. At least ask them what they think of you trying it. The doctor I saw there actually agreed it was helpful for me.
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do either of you take any meds victoria? Brenda?
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No, I’m not taking any meds right now, although I have in the past. Unfortunately I’ve not found any that work better for me than the passage of time. I don’t think I’m typical though, so please don’t imagine it will be the same for you. Nothing about MAV amazes me anymore and, like you have experienced, things can change very quickly. Good luck with your London appointment. We’ll be interested to hear how it goes.
Yes, I am on meds - Prothiaden (Dothep) and lots of it - 150mg daily. I’ve never done any of the dietry stuff other than avoiding red wine. Coke Zero is not great for me but I still drink it occasionally (funnily enough Diet Coke is fine). Lack of sleep is not good so I try and maintain a regular sleep schedule.
It’s very hard to know if the meds are helping or if it’s just the passage of time. Prior to getting diagnosed and meds my MAV always eventually burnt out of its own accord. I am inclined to think the meds are working though (rather than time) as I will get zaps of vertigo or anxiety now and then - this makes me think the Prothiaden is keeping a lid on the beast.