DD2 migrane/epilepsy

[laura4jasmine]

Hi, I joined MN to access the SN section for ds2 but I'm having a heck of a week with dd2. She has a rare combination of migrane and epilepsy, which is genetic, DH and DS2 have it as well. She suddenly gets very dizzy, staggers, then after perhaps an hour or two she is sick and then looses consiousness (sp?). She will 'sleep' for a couple of hours and then wake up fine, unfortunately the cycle usually starts again in about two hours and this cycle continues for days at a time, the longest has been 9 days. She def has the worst time of the three of them. I saw a neurologist a couple of months ago and he put her on topiramate. Has anyone else used this? It hasn't lessened the frequency of her 'turns', just changed them slightly, she's much more sleepy and not as sick. Would love to know what other experiences you've had and what sort of dose. DD2 is 2.5yo and it breaks my heart to see her laying on the sofa all day.

I was put on topiramate for severe migrane by my neurologist around 6 years ago.

It did make me very sleepy and I suffered from quite severe cognitive problems and parasthesia as well. To be honest I hated it and begged them to take me off it.

I was on it for around 6 months, on a pretty low dose iirc. Can't remember exactly what doseage now though, sorry. Apparently most people don't get such extreme side effects on the dose I was on. I was supposed to have it upped incrementally, but ended up being kept on the low dose for the whole course of my treatment.

My migraines were similar to your dd's, but afaik not epilepsy related. I would get dizzy, lose sight and speech, vomit then pass out, if I was lucky get at couple of hours respite then it would all start up again, with my longest episodes lasting 8/9 days.

I continued to have attacks while I was on topiramate, but they gradually reduced in frequency and severity over the course of the treatment. It took until the last course to see a significant improvement though.

For me personally, the treatment was awful, but it was worth it and I have only had a couple of migraines in the six years since I finished the treatment.

I am on topiramate now for epilepsy. It's worked well for me and doesn't give some of the awful effects other epilepsy meds too. However I did lose two stone in weight wen I first went on it . It depresses your appetite which in turn makes you tired so make sure and feed her little and often as anorexia is a side effect

How much is she on/kg?

Topamax is known in the trade as "dopermax" 'nuff said.

Thanks for the replies. Dd2 had a terrible day yesterday, just seemed to be constantly passing out or laying on the sofa too dizzy to get up. She is only on 30mg a day as she only started them 2mths ago. She still seems to be eating ok. My DH is on them and they have been life changing for him with no side effects, so I'm surprised by what's happening with dd2. If this continues I suppose I'll have to go back to Dr.

It took me about 3 months to properly settle on them. I used to get hot flushes and overheat until I had settled on them. Make sure she drinks enough as well as I'm constantly thirsty on them

zzzzz thanks for the info. It is Topamax she's on, I thought the very low dose was because of her age, my DH takes 100mg twice a day. I will go and try and find out the dose based on weight.
chundle your right it hasn't been very long maybe I should give them a chance :)
DD2 woke up on sun like nothing had happened and is back to her sunny self for a few days!