I wish I had more to say about month 2, but there were not a lot of significant gains. IF anything, I felt I had more confusion with managing the medication side effects, than anything. Starting in the beginning of September, I started taking the long release version of Mestinon 180mg. Right off the bat, I noticed I would have muscle spasm all over my body about 2 hours into taking the medication. They recommend taking magnesium to manage this side effect, so I started taking 4mg of [THIS] magnesium in the morning before I took the medication.

Along with that, I made sure I had a decent sized breakfast and 8-16 oz of water. It seemed to manage the muscle spasms for the first part of the month, but the started to be unpredictable these past two weeks. I could get muscle spasms 8 hours into taking the medication, along with extreme nausea and dizziness. The bonus of this was that it would cycle for about 1 hour and I would tend to feel better.

As far as psychical gains, I was still only able to bike about 10 minutes a day. Considering it was fall out, I started having FOMO about leaf peeping and somewhat forced myself to take some time to see some sight. Now I haven’t driven in 2 months due to the dizziness and nausea, but my Mom drove me around and we would stop at certain sites for a few minutes. Thankfully there are activities like the Cannon Tram, which replace the hiking I use to be able to do.

I did feel myself being triggered, which caused the beginning of a crash cycle about 24-48 hours. I am hoping month 3 will be a bit more rewarding. Fingers crossed!

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1 Comment

  1. Rachael Ladd January 13, 2020 at 8:11 pm

    Hi Sarah. I was wondering if you’ve noticed any improvements in the few months since writing the blog about month 2 of your mestinon treatment. I have cfs and am thinking of trying mestinon. I’m debating between trying that and Nimodipine, a calcium channel blocker. I found out about those two potential treatments for cfs on the blog Health Rising, which I’ve been following for a while now.

    Here’s a link to one of the articles on the website: https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/nimodipine-chronic-fatigue-syndrome-fibromyalgia/
    Rachael Ladd


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