April 19, 2007 at 1:13 am

This is my first attempt in here to respond to someone. I am GBS 11/06/2005. Its been 18 months–a long haul for me as patience wasn’t my strong suit.

There are a lot of medication out there to handle the symptoms. I am a very assertive person and had medical friends and therapists I could bounce ideas off of.

Anyway, the best thing thats helped me medicially, other then IViG, is a duragesic patch. I started with a 25 microgram patch and went to 50 micrograms every other day…so I always have 2 on…sometimes three. These patches cannot be used unless you are already dependant on narcotics..or have not taken them for more than 10 days in a row.

These patches do a great thing: they reset your floor. They stop the lows from going too far. The managment we do with our medication is likely never perfect. We tend to let things go too long or we tend to hang on to tight when we could find some freedom. These long term release patches–that can go for 3 days or more in some cases, make sure you don’t get caught off guard or undermedicated—as I have learned that not being able to take my medicines when I need them hurts me bad and it then takes a lot more medication and a lot more time before you regain control. So, I still take my meds…just less. And moreso when I need them —not so tightly scehduled (besides my morning handful of voo-doo!! 😮 )

At anyrate, I would suggest to anyone that is taking large amounts of percecet, loritab, whatever and that you want to reduce that, create a higher floor for yourself…the patches are great and don’t need reminding. They have been a godsend for me.

I hope that by sitting down with your doctor, you can find the right mix of medications that make you comfortable and still as capable as possible.

God Bless You,