Medication - changed from Rivotril to Mysoline

[Catherine]

I was on Rivotril (Clonazapan) .5mg twice a day and it really made no difference to the tremors - just about better than nothing. Was taking these from beginning of November to the middle of February. Then on neurologist's advice changed to Mysoline(Primodine) in mid February and there has been marked improvement in tremors - still there but only slightly- Was prescribed one tab(250mg) three times a day but this did not agree with me so am taking half tablet three times a day with great success. Just passing this on in case there is somebody out there who is thinking of trying Mysoline - go for it!

[aussiepommy]

Hi
I have been perscribed clonazapam 5mg 3 times a day, however it knocked me out, as in, i slept all day. I have four kids so this isn't an option for me. I have weaned down to a tablet a night and will possibly be going on the mysoline once i have weaned off completely.
When you were on the full dose prescribed, what were the side effects? Do they make you tired, put on weight, have skin breakouts?
How long are you able to stand for now you are on a comfortable dosage?
Sorry about the 100 questions. i just hate changing meds as it does take its toll and me and my family.
The last time i posted on here i was pregnant, i now have a bouncing baby boy who is 7 mths. I really need to be able to chase him around but i am getting to wheelchair stage =(
Thankyou for posting what you have tried, it really does help because like me there are others that often sit back and read. if we all posted something even if we think it might be unimportant, it may be useful for someone who is craving answers. So that is my mission now. To Share.

[jolarson]

Aussiepommy - After reading your post, I give you so much credit for caring for 4 young children and also dealing with this disease. To me it would seem almost impossible since we all know how this ailment affects us all. I take clonazepam 0.5 mg at night and if I am going out I will cut it in half to 0.25mg. I will only take that if I am going to be in a situation that is stressful and the clonazepam helps to take away the anxiety a bit. However, it has not helped me at all with the standing issues. I did have trouble with it when I first started taking it because I too felt the need to sleep all day. So the doctor cut me back to 0.25 at night and if needed cut in half during the day. The doctor has tried various other meds where the side effects were impossible to deal with and I immediately stopped them. I know n othing about Mysoline other than it is used for essential tremors and again the side effects issue can be a problem. Please keep us posted on how you are doing. My heart is with you dealing with an infant, 3 other children and this difficult disease.

[aussiepommy]

Thankyou Jo. I think you joined my facebook group also so thanks for that aswell.

That sounds like a plan for me, perhaps i too, can decrease it to a more manageable dose, so that it doesn't make me as sleepy.

I won't give up trying to be the best mum i can be, despite this awful thing that haunts us.
My children are beautiful and they are so helpful in all sorts of ways. I remember when i was going for my ultrasound with my last pregnancy, my son said to me "you can't stand any longer can you?" i just looked at him and he said"just lean on my shoulder" he was thirteen. what a beautiful caring heart.

Thanks again Jo and best of luck with your health my heart goes out to you also.

[jolarson]

Dear aussiepommy - How sweet your children sound..........giving a shoulder to lean on, love that. I didn't realize when I was looking for something about POT on Facebook that the one I found was your site! By joining, it gives the friends I have on Facebook an idea of what this disease is all about and perhaps have some understanding of what we all go through. Another way to spread the word since it is such a rare disease. Keep up the good spirit and keep us all updated on how you are doing.

[aussiepommy]

Dear Jo,
My thoughts exactly. I too think the facebook group is a good way of explaining to friends the day to day trials and tribulations we go through and also eliminates the need to explain it over and over again.
I had an experience at the dentist today, they asked me how i was paying because they have a scheme in Australia where if you have a chronic illness, you can get up to four thousand dollars of dental care paid for you by medicare. I have to a get a GP to say that it is such. I paid three hundred dollars today but if knew about this i would have discussed it with my GP first.
My children are wonderful but it's school holidays, so i will say that with a roll of the eyes at the moment. hahaha.
Take care