So one month ago I started Mestinon in the treatment of ME/CFS and Dysautonomia. If you missed the article, you can find out what testing I did (iCPET) and more about why I was prescribed Mestinon here. I was diagnosed with ME/CFS and Dysautonomia as a subdiagnosis. The iCPET test specifically determined the following and is why I started Mestinon:
The day after the iCPET appointment I started taking Mestinon 30mg three times a day.
Mestinon was to be taken with food to avoid exacerbated symptoms like nausea, cramps, indigestion. 20 – 30 minutes after ingestion, the medication would start to work and would last about 4-6 hours, hence why I take it 3 times a day. I didn’t seem to notice any changes when I started taking the medication, but I did find it tolerable.
I soon found out to definitely take it with medication, because otherwise it would make me nauseated. Some people have very severe indigestion issues and I was warned that it may cause diarrhea and/or more frequent use of the bathroom. Thankfully, I did not experience diarrhea, but did notice that it did cause my stomach to churn, although it was tolerable.
After 2 weeks, they titrated me up to taking 60mg of Mestinon three times a day. I stayed at this dose for the remainder of the month, but still have not noticed huge improvements.
To have a better understanding of my severity, I would say I am mostly housebound. Abut 9 months prior to taking the medication, I would have cyclical periods where I would go from bedridden, to housebound, to seeing friends (at most, walking and socializing), which would often send me back to being bedridden. This would be about a 4 week cycle.
The week before I started Mestinon I was moving out of my apartment, so each day I packed a little and saw a different friend as my last hurrah. I ended up pushing myself way too much to the point where I was bedridden the week I started Mestinon. That being said, it has been hard for me to tell house Mestinon has been working for me. I am still housebound at this point and I am not sure if Mestinon has improved my recovery time at all.
Daily, I am still experiencing brain fog, fatigue all day, weakness and numbness in the arms and legs (worsens as the day goes on and with activity), and post exertional malaise. From August 1st to September 1st, the symptoms have decreased and I have even more mental clarity in the morning (until I use it all up writing).
What I have noticed though, is a drop in my resting heart rate. I wear a fitbit daily from the moment I wake up to the time I go to bed. At the time of the iCPET appointment, my resting heart rate was 80 bmp. I noticed as the days went on after starting Mestinon, that my resting heart rate seemed to decrease a beat every few days. It got as low as 71 bmp around week 4, but seems to be consistently around 72 bpm.
Other than the Mestinon, here are some other changes I have made as per the treatment protocol.
I started exercising! Seems kind of weird and scary to say that, because we know that exercise is something we pay for! The plan (which you can find here) is to recumbent bike 5 days a week for up to 30 minutes. I was told to start with what I can, even if that is a few minutes, and to do that 5 days a week. I am better off doing 2 minutes a day 5 days a week vs 30 minutes just once that week.
The idea is to help build the muscle and increase blood circulation in conjunction with the medication. After I moved, I bought a recumbent bike for the house and started off with just a few minutes a day. I am very competitive with myself and quickly felt like a few minutes a day was child’s play. I did a casual 90 minutes one day and literally felt my brain fog up as I went on, but my stubbornness didn’t let me stop. I was talking to my dad while biking and could feel my brain run out of my skull. In real-time, I had a hard time finding words and everything came out slurred, like a drunk. – Yup, that biking session set me back a few days. I won’t be doing that again.
You can see by the calendar that I was able to increase my time on the bike the following week. My goal is to increase the time a minute or two each week. I also included a few days of strength training, which is comprised of horizontal, body weight exercises that target the legs and abs.
Inclined Bed Therapy
Verbally, the PA told to use a few wood blocks and raise the head of my bed a few inches to increase blood flow. That seemed kind of reasonable! When I got home, I reviewed my discharge and it said to raise the head of the bed 20-30 degrees. That seemed really steep, is that even a tolerable way to sleep?
I discovered how that was not going to work for me when I had my bed raise about 10 inches the first night. I was going to try and get use to it at a 8 degree angle. Here is a photo of how steep the bed was.
It was much harder to sleep on than it looks. I was sliding down the bed all night to the point where it was so uncomfortable that it was keeping me up. Finally at 2 am, I got so frustrated that I slept in different room.
I lowered it down the next morning to 4 inches and plan to increase it to another 2 inches next week. The first 1-2 nights where a little weird, but I was actually able to sleep. By day 3 and on, I was falling asleep perfectly fine. What I did find was that I was having very wacky vivid dreams every night. I heard this is a common side effect.
Compression Stalking and Leggings
I bought some compression socks that I wear daily. Some days I also wear my tightest compression leggings. I have noticed too much of a difference there.
Lots of Fluids and Salt
I spend so much time in the bathroom now! I drink at least 2 liters per day of water, salt water, or sugar free electrolyte vitamin water. I still experience dizziness, so not sure how much of an improvement this has made.
So far, it just has been hard to tell how the Mestinon is working for me since I caused my self a 1 month flare up that is decreasing at its normal rate. I do think the decrease in heart rate has been the best evidence so far. I have not seen my heart rate as low many many months. I think the lowest it has been was about 74 about 5 months ago. The rapid decrease is promising.
Considering all the rest and recovery I have been doing this month, I am hoping month 2 will be a better indicator for improvements. They did say that it may take a few months, so I am crossing my fingers. This week I will be starting on 180mg XR (extended release), which I’m very excited about. Part of the problem has been my memory in taking the medication 3 times a day. One pill will be a breeze.
If you liked this post, you may also like:
A Promising Chronic Fatigue Syndrome Treatment Available After Diagnostic iCPET
ME/CFS Recovery with Dr. David Systrom: Appointment #1
5 Bedroom Essentials for the Bedridden
Thank you soo much for sharing your story and journey. I an going to book an appointment with Dr. Systrom, even though there is a long wait, reading your story is motivating me to go through with it.
I would love to hear more about your journey as you progress through treatment, post 6 months or a year. Thank you and bless your heart for sharing.
Thank you for the kind words Aseel! Yes, you should definitely just get the appointment in the books now – which will probably be a year+. Hopefully in the meantime, you can work with your current doctor. It is great to know there are some doctors out there who are specializing in ME/CFS and we are getting the diagnosis we need.
I definitely will be doing a monthly update! I am very hopeful!!
Hi Sarah, I too have MeCFS. Very severe for 19 years now! Mostly housebound and bedridden at times. Today I started mestinon and am pretty excited about this drug! Any improvement at all would be a blessing!
I love reading your posts about your experience and all the other people who share their info too! Thank you from Canada!!
So happy to hear you are starting a new treatment and are hopeful! I hope that you will see some improvement with mestinon 🙂
Hi Sarah! Thanks for sharing your experience with taking Mestinon. Your post caught my eye as it’s a drug my vascular cardiologist has considered for me several times, but seems doubtful about how much it will help. After reading bothof your posts about your experience, I think we may have made the right choice to increase my florinef instead. So far, it seems to be exactly the pick-me-up I needed. I hope things turn around or you find something else that works better. It takes so long to find the right things! Best of luck to you with it.
Thanks for your insight! Glad to see you found something that is beneficial for you! Yes, I am still seeing if the drug will benefit me. So far it is hard to tell. They said it will take several months. Based on the research Dr. Systrom has done, it has helped many patients with dysautunomia and me/cfs. I am still very hopeful! 🙂
Thanks for sharing your experience on Mestinon Sarah. I hope you keep us updated in a few months. I started it in July 2019 and have found it helps to keep my heart rate under my anaerobic threshold during trivial activities, whereas prior, just walking from one room to another would take me over that threshold. Sometimes just standing would do it. Mestinon has greatly improved my digestive issues and slightly improved my muscle strength/stamina during repetitive movements. I think overall, this medication has given me about 20% increased function. However, it isn’t a magic bullet. I still crash and get PEM if I overdo things, so pacing is important to continue. I started much lower than you did as I’m sensitive to medications and gradually increased each week. I’m currently on 60mg x 3 times per day with no side effects. It hasn’t really helped with pain, fatigue or headaches, but definitely has been worthwhile for me to continue. Any improvement is a positive and I feel I would be a lot worse off it I hadn’t have started it when I did due to my rapid deterioration. I struggled to eat solid food and on my worse days, even water was difficult to swallow. Now I’m back to eating normally on most days.
Thanks so much for sharing that! I’m glad to hear you are finding some benefit from it. I have been on it for 4 months now (need to write an update) and I seem to have similar results as you. I do find that crashes and PEM are still a huge issue for me and I am still trying to understand where my body is at. I tend to overdo things and don’t realize it until it’s too late.
Are there other things that you are doing as well for treatment? Are you on an exercise program, supplements, or other medications?