Thanks very much for your input Twinks. That's very interesting. I've noted Entacapone and Selegiline for when we speak to the consultant next. Mum is "only" on 600mg Madopar so it sounds like she has scope for upping that dose. And rereading the comments, I see that dispersible madopar was mentioned. Presumably that's quicker absorbed, that might be helpful too. How come the medics haven't mentioned that before? They know she has some swallowing problems, though thankfully not major at the moment.
She usually takes the madopar on an empty stomach - except for her morning one. So we'll revise that too, thanks for the tip. Actually our old pharmacist told her to take it WITH food, a biscuit or something.
Yes, she definitely deserves better than this :-( It's awful to see her like this and she hates feeling so useless, despite all my reassurances that it's not her fault.
Benji, glad you were able to stop the Requip before the side effects develped. It seems such a tricky balancing act. I never knew it was so complicated.
I have said somewhere else on here that my madopar dosage is 4 x 250mg(total 1000mg) per day.
That is a high dose considering you said in another post that you had undergone DBS.I thought that that would result in less medication?
Harbell, for my OH the dispersible Madopar was useless.The next step with be the apo go pen.
Curoius, did u start at 250 x 4 or work up to with the125 being enough previously. Im on 125 x 5 at the moment but itdoesnt feel like enough.
Ant
Did you start on 125 x 4 or will you always on 250×4. I am currently on 125×4 but it doesn’t seem like enough
Hi, I have been on a lower dose but since I had the Deep Brain Stimulator fitted my Consultant put it back up. The other thing is that I also have a Dystonic Tremor which affects me when I have to really concentrate on an activity. When I am in company I am prone to feeling self concious when eating so try to go in places when they are not so busy. I presume I will always be on this dose until I am told otherwise. I take them when I wake up and work out roughly an even period of time between each dose, sometimes it is five and a half hours sometimes it is less it just depends upon when I surface.
Les
Hi,
Re madapor dosage,I am on 5x187.5 per day at 7am and 10 1 4 and 7pm then 2 controlled release at bedtime 2 x 125,and in the morning a dispersable z of 62 5 this gives a total of l250 the levadopa is 1000mg and the benserazide is 250g.Its the total levadopa that’s important and they usually keep you under 1000mg I have been diagnosed for over 6 years started on 3x62,5 this is a high dose of levadopa the only other drug is 10mg of selegeline.hope this info helps
Cheers Anne D
Further to my earlier post on Dystonic Tremor, had the consultant listened to what my wife said prior to my having DBS fitted I might have been able to relate a different story but Consultants once they get the bit between their teeth they are blinkered to anything else. It can only be Parkinsons related, they now realise that I DO have two tremors, non-related and could have dealt with both when they did my DBS. Now, if I want the Dystonic sorting it means going back in for more DBS treatment which was daunting enough first time around. Will see what the future holds, at present I am coping but am ever mindful of the Dystonic side.
Les