F/U : I have been on nimotop for close to 4 months now. I started on march 9th. I am now at 75 mg per day divided in 2 doses, morning and pm. I had no significant improvement in march. April was a really bad month, I had 15 days of crash. In may, I had 5 days of crash in the third week. Since then, so over 1 month, I have not had a crash. It is the most I have been without crashing since I have been sick (18 months ago for the accute part). I can do about 3 hours of light activities per day, most days. I can take 45 minute walks once or twice a week. I can use my bike maybe once every 10 days, from 30 minutes to 60 minutes, at a slow or medium-slow pace.
To be honest, I have started monitoring my heart rate and anaerobic threshold at the end of may, right after my crash. A few days later, I also started monitoring my heart variability every morning and planning my days accordingly. I have been pacing religiously also.
I think all these factors put together are helping me. I am far from being out of the woods, but I am slowly, very slowly getting there, hopefully.
I will be continuing the nimotop for now and maybe try to lower the dose when I am able to do close to a regular day of activity.