hbep

Hi Jen,

Great to hear from you and also that you've been doing great for 2 months. I was wondering how you were doing now only the other day. I am 4 weeks into a relapse - happy new year to me (not, lol) As you probably saw from my last post the killer combo of a cold followed by a stress inducing interview type meeting seemed to be thing that tipped the balance.

It's been grim - 24/7 spaceyness/feeling like an alien, bits of mild vertigo at night, and some horrible photosensitivity which is a bit of a new one for me. I have had tiny bits of this before, but never so much and so often. Light just feels too bright. Anyway, long story short my neuro started me on the migraine preventative topamax, nearly 3 wks ago now. Horrible side effects to start with - foggy head, tingling, irritable, and a marked increase in tinnitus. I've stuck with it - not easy - and they've subsided a lot bar the tinnitus increase and intermittent fog. Not sure if it's the drug for me, but the last two days I seem to have seen a bit of a break in symptoms, not cured by any means, but a lifting in severity.

To be honest, Jen, it's really hard to say if it's the drug helping or if it would have happened anyway. It's even possible at this stage that the drug has actually prolonged my symptoms, my initial reaction to it was so bad. I am thinking about what to do about it, come off it, go up on it, stay at the same dose for a bit longer etc... Tough one, can't say I am wild about the increased tinnitus and the bits of mental fogginess. It's all guess work as to if it's doing any good and if a higher dose would make me feel worse or better. The one good thing is it has made me much more confident about trying other drugs - this is a seizure med - one of the big guns - I was scared of trying it - but seeing as I've done it and lived to tell the tale - everything else only seems equally as grim or less bad - so hey, bring it on, lol. Anything's better than these stupid symptoms.

In short this relapse is a great big pain in the backside as you will know. Pretty much messed up my whole X Mas. I indulged in a big old pity party there for a while, more shock and frustration really that it could hit again so badly, although it wasn't at the same severity as before, different actually, more feeling like a freakish surreal alien all the time as opposed to a vertiginous foggy headed zombie. Not as disabling. I have calmed down again now, I suppose the shock has worn off and I have got in to the swing of it being back and kind of accepted it's going to take a while to crawl out of the hole and there's no point in me kicking and screaming, metaphorically speaking, all the way.

It sounds like you're on to something with the whole estrogen thing. I remember a neurotologist telling me that some people with MAV get better on the contraceptive pill and some have to come off it to get well. I guess that must be something to do with estrogen. So the same might apply to pregnancy and breastfeeding. Although like you, it's not something I know enough about to be able to say what exactly is going on, only that there may well be a connection btwn why you were both good during pregnancy and post breastfeeding.

How long did your dizzy relapse last in the end? Were your symptoms the same as when it first hit or was there a difference this time round? Really interested to hear as I have been surprised that this time things feel a bit different, not completely, but a bit.

I'm sure you'll feel better again after the jet lag settles down. Even during my recent long good spell any big disruption in sleep pattern would always set me off a bit, but would generally settle down again pretty fast once I'd rested. Great that you have the pizotifen to hand if things go array.

Always great to hear from you, Jen, wish I could tell you I was doing great, let's hope that day isn't too far off,

best,

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hbep