Dechi
Senior Member
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As @Hip suggested, I am opening this thread in the hope that it might help someone else deal with PEM.
When I started being sick, for the first year, I was crashing a lot, no matter how hard I tried not to. 21 days without a crash was my record. Then, in march 2016, I convinced my doctor to prescribe me Nimodipine (Nimotop). I had bought a book about treating ME and had decided to follow this protocol that used Nimotop as it's main ingredient.
I started with 7.5 mg once a day (1/4th of a pill), but could not tolerate it. I knew I had to manage the dosage myself according to side effects, so I decreased to 3.75 mg per day (1/8 th of a pill). Then I was okay and from there I slowly increased my way up to 30 mg twice per day (once in the morning, once in pm). Sometimes I had to decrease for a week then start going up again. I went as high as 45 mg twice a day, but my maintenance dose is 30 mg twice a day. This whole process took 2 months !
After 2 months, in may 2015, I stopped having crashes. I didn't realize it right away, because this is not the type of drug where you just wake up one day and feel like your life has miraculously changed... But I was recording everything in a journal, keeping stats and graphs, and in august, I realized I hadn't had one single crash for the whole summer !
Before taking Nimotop, I couldn't do any exercise without jeopardizing my health. I had stopped trying to go to the gym because it was making me crash. I had to stop working with my physical therapist, because no matter how much easier she made the program, I was still crashing. At the end of our work together, I was only doing stretches and still couldn't manage it. Walking was hard. When I took the dog for a walk, I had to sit down to rest every 15 minutes or so.
After Nimotop, I started going to the gym again. I had learned from all my crashes so I made up a nice program that was achievable and was able to stick to it (3 minutes of weight lifting over a period of 45 minutes. The weights are pretty heavy). Also, I was able to start biking again outside. At first I would only go for 20 minutes at a time, and my speed would stay around 12km/h. I went maybe 3 times a week. After a while, I could go for as long as 60 minutes, when I was having a good day. And my average speed increased to 18-20 km on those good days. That is quite an accomplishement compared to what I could do prior to Nimotop.
3 weeks ago I had a definite proof that Nimotop is what's making the difference. I had to stop it to take a stress echo, where I had to pedal lying down for less then 9 minutes. 24 hours later I had the first crash I had since Nimotop had started to work, in may 2016. It took me 10-12 days to go back to my baseline. I was depressed and scared, I was afraid I wouldn't go back to what I was. I started taking Nimotop as soon as I could and I slowly improved to my prior level. Gym is okay again.
I think people don't give enough credit to this drug. Most of those who try it want it to work really fast and they start off on high doses and get too many side effects and quit. I think if people took their time to slowly increase the dosage and tried it at least 3 months, they would have success more often. Sometimes it works on cognitive problems, also.
It's not a miracle drug and it doesn't solve all our problems. In fact, pretty much is the same with me, except for PEM. But removing PEM from this dreadful illness is already a precious gift.
When I started being sick, for the first year, I was crashing a lot, no matter how hard I tried not to. 21 days without a crash was my record. Then, in march 2016, I convinced my doctor to prescribe me Nimodipine (Nimotop). I had bought a book about treating ME and had decided to follow this protocol that used Nimotop as it's main ingredient.
I started with 7.5 mg once a day (1/4th of a pill), but could not tolerate it. I knew I had to manage the dosage myself according to side effects, so I decreased to 3.75 mg per day (1/8 th of a pill). Then I was okay and from there I slowly increased my way up to 30 mg twice per day (once in the morning, once in pm). Sometimes I had to decrease for a week then start going up again. I went as high as 45 mg twice a day, but my maintenance dose is 30 mg twice a day. This whole process took 2 months !
After 2 months, in may 2015, I stopped having crashes. I didn't realize it right away, because this is not the type of drug where you just wake up one day and feel like your life has miraculously changed... But I was recording everything in a journal, keeping stats and graphs, and in august, I realized I hadn't had one single crash for the whole summer !
Before taking Nimotop, I couldn't do any exercise without jeopardizing my health. I had stopped trying to go to the gym because it was making me crash. I had to stop working with my physical therapist, because no matter how much easier she made the program, I was still crashing. At the end of our work together, I was only doing stretches and still couldn't manage it. Walking was hard. When I took the dog for a walk, I had to sit down to rest every 15 minutes or so.
After Nimotop, I started going to the gym again. I had learned from all my crashes so I made up a nice program that was achievable and was able to stick to it (3 minutes of weight lifting over a period of 45 minutes. The weights are pretty heavy). Also, I was able to start biking again outside. At first I would only go for 20 minutes at a time, and my speed would stay around 12km/h. I went maybe 3 times a week. After a while, I could go for as long as 60 minutes, when I was having a good day. And my average speed increased to 18-20 km on those good days. That is quite an accomplishement compared to what I could do prior to Nimotop.
3 weeks ago I had a definite proof that Nimotop is what's making the difference. I had to stop it to take a stress echo, where I had to pedal lying down for less then 9 minutes. 24 hours later I had the first crash I had since Nimotop had started to work, in may 2016. It took me 10-12 days to go back to my baseline. I was depressed and scared, I was afraid I wouldn't go back to what I was. I started taking Nimotop as soon as I could and I slowly improved to my prior level. Gym is okay again.
I think people don't give enough credit to this drug. Most of those who try it want it to work really fast and they start off on high doses and get too many side effects and quit. I think if people took their time to slowly increase the dosage and tried it at least 3 months, they would have success more often. Sometimes it works on cognitive problems, also.
It's not a miracle drug and it doesn't solve all our problems. In fact, pretty much is the same with me, except for PEM. But removing PEM from this dreadful illness is already a precious gift.
