Hi everyone
I decided to post because someone mentioned to me that as I hadn’t posted in a while then hopefully no news was good news.
Well that is indeed the case. I’ve been pretty good recently, better than I ever thought possible. I honestly felt at times my brain was so totally scarred by this thing that it would never recover.
To recap, I was doing ok over the summer but then I had a pretty bad crash in late August/early September. Because of this Dr S prescribed Topiramate to add to my 400mg Lyrica. He reckoned increasing the L wouldn’t help.
Well, the top made me feel weird, so, against his advice I increased my Lyrica from 400mg to 450mg. And within 24 hrs of upping the Lyrica, I could feel it doing its magic on my brain and I felt better again. After a week I was fed up of the increasing weight gain so went back down to 400mg.
Which is where I am now. I have been feeling better than I have for years. I have a new job which I love. I have taken 0.25mg Clonazepam only twice in 10 weeks. I have only had the dizzies twice too, each time lasting less than a day and going away after a clon and a night’s sleep. I sometimes wonder if I’m overdoing it. I hope not. I feel I’m getting the balance right between activity and rest. But I have had ‘blips’ rather than crashes.
I’m about 95% most days, but I’m not that great I can forget I have MAV. Oh no. Stand me on a platform looking at a moving train, or get me far too drunk one night and I REMEMBER. But life’s totally liveable. I don’t like the fact I’ve put on 7 lbs and eat like a bird and exercise like hell (which is good for the MAV I think), but it’s worth the trade-off.
I’m prepared to feel ‘vulnerable’ to an attack around my period so I don’t push myself. I’m also taking Oil of Evening Primrose to help with hormonal balance. That’s the only supplement I take. Oh, and I’m still on Dr S’s MAV diet, that’s the one that says no dairy, no eggs, no random pineapples etc. So it could be that, but I don’t think so (I’m not convinced my MAV’s diet related, other than red wine being a definite trigger).
If/when I ‘crash’ again, I’m going to see if increasing the Lyrica temporarily again helps. I’m keen to start reducing it soon, although I’ll wait and see what Dr S says at my next consultation.
So that’s me at the moment. No major breakthrough, no major news, but I feel I owe it to this forum to update occasionally, even when feeling well.
Thanks for all your support
Dizzy Lizzy
x
It’s unlikely you need to increase your dose as long as you don’t let the triggers pile up. When enough triggers do pile up, it can negate any med we may happen to be on.