UPDATE: I developed a rare but, I hope, manageable side effect to this med: constipation. (Sorry if TMI.) I have another condition that is prone to this anyway, but never really had any problem with it before. I guess most seizure meds have the RARE but slightly possible side effect of constipation, but Mysoline's rating is that only 2.37% (mostly older women) of people taking it develop this side effect. Lucky me. :(

Anyway, I'm hoping this can be managed, because so far, the Myso is really giving me a lot of low/no T days. I backed off a little from 500mg to 400mg and my T is still mostly low or none (once I get out of bed and moving each morning). We'll see if that lasts--we all know what a big jerk T is.

Thanks for the update. I think many would put up with constipation to have low or no T days....I think I would and eat more prunes....

I take a magnesium/calcium/zinc supplement that I bought at a health food store to keep regular. I take three tablets a day and have no problems with constipation. Drink lots of water and increase fiber in the diet as well.

Shekinah

Julie, I agree with erik, it's a price I'd be willing to pay for low or NO T!!! NO T, that is so wonderful!! You've come so far Julie and you deserve it!!!
Sue

Thanks, guys, for your comments. I just have to get this figured out--it's been pretty severe and painful, but I'm hoping to get a good method figured out so that doesn't continue. (Several things I have tried haven't helped a bit--thanks YTJ for your input on what you do.) That way I won't have to give up the Myso.

I did have a series of short sleeps all night last night--basically a series of naps--and woke up to a high hiss/whistle today that DIDN'T go away. Myso def does not stop T after naps. :(

Julie, I think you are going to have to face the fact that you are not going to enjoy a good nap again:( Do you take probiotics? That might help.
Sue

Julie:
after reading your post about Mysoline.....I was encouraged.......Got it from my doctor (actually it's Pimidone 50mg, he wanted to go slow with this). T was real loud when I went to bed last night.....had taken "the pill" a hour prior. after watching TV for about an hour I realized my T was like 1/2 the intensity. OK great, I fell asleep, woke up a couple of times, was able to fall right back to sleep (that's rare), got up this morning and T was still LOW....but I was sooo dizzy & it's about 3pm right now and I'm still real dizzy. You had no problem with dizziness? The T's a bit stronger right now (@3pm). I had also taken a.5mg of Xanax last nite. Tonight I'm going to take 1/2 a zanax & the Pimidone but I'm curious about the dizziness.

Sue--Yes you are right. Naps are apparently not do-able, even when I feel crummy and just want to sleep. And the older I get, the easier it seems to be to doze off in front of the TV! Boo! Yes, I take probiotics! :) Thanks! :)

Hi Marl,

Yay! I am glad you are trying this! As my super-doc says, this is one way we find out about new treatments.

I also take Primidone--50mg pills. But I WILL say that my dot, a PA, said not all generics for Primidone are created equal--so if one generic does not work for you, you may need to try another. I started at 50mg and over a month worked up to 500mg (though I have backed back down to 400mg). That is an "average" dose of a person with seizures--though some go as high as 750mg. The generic I take is made by Qualitest--you can see the name on the bottle. I had no problem with Qualitest brand, but when I let Walgreen's switch me to another generic manufacturer, I got a big headache and stomach ache!! I got back off of it in 2 days when I was able to get more of the Qualitest generic.

My doc DID make me go off the Klonopin I was on--IDK if that would make a difference with your dizziness. It wasn't hard to go off because of the many low T days I was having--didn't feel I needed the Klono to help keep my T low (I was taking a Klono/Trileptal combo and getting about 5 low days per week).

If you go on the Medscape interaction checker, you see you shouldn't really use Xanax (or other benzos) with Primidone:

http://reference.medscape.com/drug-interactionchecker

However, I have taken a bit of Klono with the primidone, but not until I was on the Primidone for 6 weeks and my body was used to it.

So maybe using it with Xanax is causing the dizziness? Or maybe it's the generic brand doesn't agree with you? Or maybe it's just an initial reaction by your body to taking a seizure med (have you been on gabapentin before?).

I'm so sorry you feel dizzy--that is no fun AT ALL. 50mg is a very low dose, so I'm rather impressed you noticed a change in your T at such a low level! Wow! And good for your doc for letting you try it!!

It could be a fluke that my T is less 'cause ya know how T is .......Maybe I'll try the Primidone & NO zanax tonight......I'll let ya all know.

OK Marl, maybe that will help. :) Hope so! You can't function if you feel dizzy. :( Did you which mfg you have for your Primidone?

Yes, I know how T is!! So temperamental!

Marl--what's the latest on your use of Mysoline?

Yes Marl. any updates?

What happened to Marl? : (

Latest update--the T isn't always loud when I wake up in the night anymore (which I always do at least once) -- I hear it, but it's not screeching loud like when I first started the Myso. Also, for the last week, I will sometimes wake up in the morning to quiet T instead of loud T that settles down after I get up, have my coffee, get moving around. This is new--until now on the Mysoline, I always woke up to loud T and then 98% of the time it would settle down (either to silent or so quiet I have to listen for it).

However, this past week I have been waking up to quiet/silent T, more like when I was on the Trileptal/Klonopin mix. On that combo, I would wake up to almost complete silence in the morning or to T of various levels, and then had that all day. I would have about 5 silent or very quiet T days a week. But I was always waiting for those 2 bad days--wondering when they would hit--each week.

On the Myso, it seems I still have bad days when I didn't sleep well at night. That is, if I wake up often--i.e., have a series of "naps" throughout the night--I wake up to bad T despite the Myso. Not screaming teakettles at volume 10, but I've definitely had a volume 8-9 day after a "naps all night" night. Myso does not help me with naps, that is for sure. But if I can get a good night's sleep, Myso is giving me a good T day the next day most of the time.

Julie, I'm sorry you are having problems. Wakeing up is tuff on me also, thought I was the only one. Wish I had a cure-all for all of us. Hope you feel better, Frank

Hi Frank,

I'm actually doing really well on the Myso (lots of silent or almost silent days). It's only when I have a bad sleep (lots of short sleeps all night) that the Myso doesn't work. :)