Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

I'm just about back to 'normal' brain wise from that dose rise now.

If only my fanjo was back to normal. The pain is now pissing me off, and I'm still losing fresh blood - mostly because I'm NOT able to making allowances for the fact that half my cervix has been lasered off...

Make life easier on yourself - ping meals, oven shit, simple stuff. Don't do ANYTHING that can't wait. And really THINK about what can't wait a week or two.

Make sure your DH steps up and helps as much as possible too (not easy, I know, he seems very like my Ex...)

Don't make plans for a massive day out at the zoo or something, nothing that involves putting too much extra physical strain on yourself.

If it can wait till tomorrow, leave it till tomorrow!

Breathe. Remember you have had other family members take Topamax without the eye problems. You will be fine!

Hello

Had a thread on aibu but have heard there is more support here. I have a sister with epilepsy and 4 disabled dcs, dd1 (11) has EDS hypermobility type, PoTS (causes faints/dizziness) and pectus excavatum (ribcage prob), ds1 (6) has EDS, is on medication for severe migraines and has multiple severe food allergies, dd2(3) has EDS, type 1 diabetes and food allergies and ds2 (11mths) has EDS and pectus excavatum.

Dh+I both have eds but dh much more affected by it than me.

Yep, Epilepsy's a bitch. EDS / Hypermobility Syndrome blows chunks too!

Hi Ariane. We're a right bunch on this thread.

To clarify, more than on the other thread, my DD has Hypermobility syndrome + loads of other crap.

My DS1 I'm attempting to get assessed for Aspergers (though any dx will just be ASD now as the classification has changed).

My DS2 has severe Hypermobility syndrome, is being assessed by Prof G in May for EDS, possibly vascular type. He has kyphosis and severe constant pain because of his Hypermobility, didn't take his first steps till 3.7 years old, suffers daily subluxes, can hardly hold a pencil as his thumbs sublux blah blah, you know the score! He's also got chronic brittle asthma and has 'Autistic traits'.

DS3 is 2yo, and also has Hypermobility syndrome, though not as severely as DS2. He's got multiple life threatening allergies too. And is being assessed for Autism in May...

And then there's my own broken body - epilepsy, and the arthritis as a complication of Hypermobility syndrome! and probably POTS too, but undxd as yet.

But hey, we're all here, trying to get each other from one crisis to the next.

I would take it literally before bed if you tried that - because if the stimulant effects of Topamax. Can't guarantee that you wouldn't wake up after a few hours though...

Plus, I wouldn't go right from taking it first thing in the morning to taking it before bed - you'd have to adjust that by a few hours each day, or you will be making the side effects last longer - as you'd be 36 hours without a pill.

I rattle when I walk, Leonie!

Aw, that's crap. Tbh, I remember the lack of sleep too. To the point where I was going slightly, erm, odd. And the headache. Thing is, because I was so desperate at the time to keep the seizure control Topamax offered me - I was happy to put up with that!!

I was soooo upset when they eye thing happened because that was when I HAD to stop taking it. And I've found nothing since that has controlled my seizures as well as Topamax.

Which is a pain in the arse!