Hi Hbep

I haven't logged into the boards in absolute ages, but had what Kathy accurately calls a "drop" moment earlier which made me think of my dizzy friends. I have been in South Africa on holiday and have been dealing with not only mine, but my baby's jetlag (9 hours difference between SA and Oz!)this week since getting back to Australia. It hasn't been fun.

How are you feeling? I saw the post where you were feeling so bad for 2 and a half weeks. I might have missed a post since then, but how are you now? Any improvement? What a horrible time to have your symptoms flare up.

I have been feeling pretty good for some time now (2 or so months). My symptoms flared up for a week or so before Christmas, but not too badly. They were coupled with a week of headaches too so the MAV was definitely playing up. Since then I've felt really good. I made the mistake of thinking about how good I was feeling yesterday so today I feel a little worse and had that 'drop' moment earlier. I hate those - so scary.

I have Sandomigran ready to take as I have finished breastfeeding my baby (at last! - I made it to 11 months :) ) but my symptoms have been so good that I haven't felt like I've needed to take it. I'm wondering if the low estrogen and high progestogen caused by breastfeeding made me feel worse last year?? Hmm, I don't know enough about this hormonal stuff, but I do know that when I was pregnant I felt almost 100% and when you're pregnant your estrogen is sky-high. Maybe with the hike in my estrogen levels my symptoms have decreased. Who knows. Time will tell.

Anyway, I hope you're feeling better now. I'm going to get my first good night's sleep since arriving back in Australia a week ago which I am hoping will zap these symptoms which are showing horrible signs of flaring up! Whew it's been a long week.

Jen

Hi Jen,

Hope you don't mind me chiming in here but wanted to let you know that I was also in South Africa late last year. It was the trip back that wiped me out too for about 5 days. Going there was pretty fine but it seems flying west to east is the killer - not sure why. Anyway, I'm sure whatever you are feeling now will all go quite quickly with a few good sleeps.

Best...Scott

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,

Jen,
Ya know....just when I ask myself...."I wonder how Jenn is doing?" You pop in. Sounds like you are doing pretty good. Your baby must be big??? Are we walking yet? Great to hear from you.

Kathy :D

Hi Hbep and Kathy

So sorry to hear things aren't better Hbep. I know exactly what you're going through with the drug dilemma. My head spins when I think of whether I should or shouldn't take drugs, how much to take, how long to take them for. Ultimately, I think we all just want to be drug-free, but maybe we have to just accept that that can't be the case.

My relapses are always pretty much the same severity, but never as bad as the first year that I had symptoms. I generally feel foggy headed, very drowsy and "dizzy" (but not vertigo) when I move. In December it lasted about a week. Unfortunatley another bad phase started yesterday. I pretty much thought it would after the 'drop' moment I had the day before. Now I'm the one debating whether I should take the Sando or wait this one out. If I'm going to have 2 months of low symptoms between bad phases then I'd rather wait this out, but I don't know if I will!

Hi Kathy. My boy is big now (11 months), although he's a skinny-malinky like his dad. He is on the verge of walking but not quite yet. He is such a joy and always makes me feel better when the dizzies are getting to me. I have 2 months left of my maternity leave (I took 15 months off!) and then I'm back to work at the beginning of April. I'm not dreading it as much as I was initially, but I'm sad to put him in childcare - not something I'm alone in dealing with in this world!

Cheers
Jen

Hi Scott

Yes, flying west is so much worse that flying east for some reason. There is something about losing time that is so much worse than gaining time!

Did you go to SA on holiday or are you South African too?

Cheers
Jen

Hi Jen,

I was over there for a conference...something the university covered for me. After the five days we had another 4 days to go on a Safari. It was great and I had only minimal vestibular junk going on while I was there. The worst was coming home! Did you go on a safari while you were there? Interesting place for sure. I want to back one day and spend a good month or two there, maybe see some other countries like Kenya. Apparently there are stacks of animals to see up there.

Best...Scott :cool:

Hi Scott

Yes, we went to two game reserves while we were there. My inlaws have timeshare at Bakubung (near Sun City) and we spent a long weekend at Mabalingwe near Warmbaths. We saw wildlife at Bakubung, but not at Mabalingwe. It's a gorgeous country - pity it's such a dangerous place to live otherwise I'd move back tomorrow!

Glad to hear the symptoms weren't bad while you were there. There's nothing worse than having this rubbish interrupt a holiday!

Jen