I have been on Mestinon (also called Pyridostigmine Bromide) for over three months now. I have been sick for most of that time, but I can still see that Mestinon is having a positive effect.
What is Mestinon?
Mestinon is technically classified as a “muscle strengthener”. Our muscles utilize the neurotransmitter acetylcholine to contract. Mestinon inhibits the activity of the enzyme called acetylcholinesterase that breaks down acetylcholine. So, the muscles can contract with more strength. Typically this medication is used for patients with Myaesthenia Gravis, an autoimmune disease that is characterized by muscle weakness. However, some studies and anecdotal evidence have demonstrated the benefits of using Mestinon for POTS as well as ME.
How does Mestinon work for POTS?
Both the parasympathetic and sympathetic nervous systems utilize acetylcholine, but the parasympathetic nervous system uses it to a greater degree. So, the “rest and digest” nervous system, which we need more of, has more fuel. This may reduce the tachycardia found in POTS and improve symptoms.
People with POTS can also have muscle weakness. That can make it more difficult to exercise. Mestinon may improve this muscle weakness, improving the ability to exercise. Exercise is one of the most effective POTS treatments we have at the moment, so Mestinon may help in this secondary manner as well.
How does Mestinon work for ME/CFS?
There is a lot of crossover between POTS and ME, but it is possible that Mestinon is useful in ME as well. There is currently an interesting clinical trial going on using Mestinon for ME. They are studying how Mestinon impacts hemodynamics and oxygen uptake, which are relevant to both POTS and ME. There’s also plenty of anecdotal evidence of people with ME responding well to Mestinon, such as Jennifer Brea (prior to her being in remission due to surgical correction of her craniocervical instability).
Mayo considers part of the etiology of ME to be the oversensitization of the nervous system, or too much sympathetic nervous system activity. Mestinon combats this by increasing parasympathetic nervous system activity (the yin to sympathetic nervous system’s yang).
As I mentioned under the POTS heading, Mestinon is a muscle strengthener. This can be useful for ME people as well as they typically have significant muscle weakness.
For me, it’s hard to know where ME starts and POTS ends. Therefore, a lot of what I talk about refers to both. If something helps me with POTS, it’s probably helping me with ME too. One day, we will understand these diseases better and I think the lines will be drawn differently.
How has Mestinon helped me?
As I said before, with all the sickness that I have had I do not have the complete picture of Mestinon’s effect. However, I can tell that it is helping with one of my most bothersome symptoms- “gassed muscles”. My muscles usually feel like I’ve been doing non-stop sprint repeats and this exacerbates fatigue and makes me have poor endurance. Mestinon improves this symptom. The first area I noticed it was walking up the stairs. I was no longer doubled over gasping for air.
I believe Mestinon also helps me with my biking sessions during the Modified Levine Protocol. As a muscle strengthener, this makes sense.
Mestinon really gets things moving along if you know what I mean. Gastroparesis is a common issue for POTS patients and Mestinon may help with that by improving gastric motility. I don’t have gastroparesis, but I still noticed significant improvement in this realm.
I just did a quick poor-man’s tilt table to give you a quantitative idea about what Mestinon does to heart rate. My resting heart rate is 56 and when I stood it went to 101. After a short time, though, it leveled off in the 70’s. A few months ago, when I did that same test, my heart rate leveled off in the 90’s. These things vary day-to-day so that’s not a bulletproof representation. N=1 as my scientist husband always says. True story, when I got pregnant with our first son and showed him the pregnancy test he said “Well, N=1, we need to get more tests.” Also, he took a pregnancy test as the “control”.
Another observation is that when I was biking this week, I physically could not get my heart rate over 115. My legs felt like bricks as I am still recovering from the sinus infection, so it’s possible that my muscles weren’t cooperating to get my heart rate high enough. It’s also possible that this latest increase of Mestinon has lowered my heart rate. Time will tell. Update- Time has told. Mestinon lowers my heart rate as I explained above. The increased cardiac fitness has probably contributed to this lowering as well.
Dosage
At the time of writing this (January 2020), I take 60 mg twice a day. I take one first thing in the morning right before I exercise, and then another tablet mid-afternoon. My neurologist said I could potentially add one more 60mg tablet. I would like to try that since I see a benefit of this medication. I very gradually increased my dosage like this:
- 15 mg once a day
- One week later I did 15 mg twice a day
- A week after that I did 30 mg and 15 mg
- One week later I did 30 mg and 30 mg
- I can’t remember how long I waited for the next increase but then I went to 60 mg and 30 mg
- Just recently I increased to 60 mg and 60 mg
- Update- Since writing this post a few months ago, I have increased the dosage. I now take 60 mg first thing in the morning, 60 mg around 1pm, and 30 mg around 5pm.
- Update– A couple months after the last update, I have increased to 60 mg three times per day.
- Update– Just kidding. 60 mg three times per day is too much. Ouch. I’ve been sore when I wake up for months which I have just been ignoring. When I increased Mestinon this last time, the soreness worsened, so I asked my doctor if there was a connection. She confirmed that Mestinon could be the cause of this. So, I will be backing off a bit. I’ll update when I land on a dosage.
- Update 10/2020– The soreness/stiffness continued to be problematic, so I had to continue walking down the dosage. I have landed at 60 mg in the morning and 30 mg around 1pm (the farther from bedtime I can take this second dose, the better). I feel the same POTS-wise as I was at the higher dosages, so that is good. My neurologist said that she would not consider Mestinon to be a “forever drug” for me. She would like me to try to wean off of it this fall/winter and see how I do. I may find that I don’t need it anymore. I’ll keep updating this part as I go along.
- Update 11/2020- I am currently taking 30mg upon waking and 30 mg at 1pm.
Side effects
I have had minimal, temporary side effects from Mestinon, which is fantastic. Midodrine and Florinef did me dirty, so I was pleased to react well to Mestinon. When I increased dosage in the beginning, I would have some temporary nausea and diarrhea. After a few days, my body adjusted, and I was fine. My doctor told me to be on the lookout for muscle twitches and hypersalivation. Those are signs that the dosage is too high.
Update– I do not know how common this is, but as I explained above, I experienced sore and stiff muscles after waking up and for a few hours after. This began with the highest dosages that I tried. I also get some minor muscle twitches at the higher dosages. My doctor was not concerned with that because it was pretty infrequent and didn’t bother me at all.
Note- A reader brought up an important note in the comments that I want to add here for visibility since it asthma is common. Asthma is listed as a precaution/precaution to taking Mestinon. Patients with asthma may react poorly to Mestinon and have difficulty breathing. Some doctors may still prescribe it at lower dosages for patients with mild asthma, but as in the case of the reader that commented below, it may still cause trouble. So, make sure you discuss this with your doctor if you have asthma and be cautious with it.
Which POTS group is it best suited for?
In my neurologist’s experience, she has seen Mestinon work best in the subset of POTS patients that can exercise and have mild-ish POTS. That doesn’t mean it never works for people outside of that subset, that just tends to be the most common group with positive results.
Mestinon doesn’t increase blood pressure and only mildly lowers heart rate, so it is not considered a “first-line” drug. Doctors will typically try beta-blockers (ex. propranolol), vasopressors (ex. Midodrine), or blood volume expanders (ex. Florinef) first. If you have exhausted the first-line options, it may be worth asking your doctor about Mestinon.
Have you tried Mestinon? How has it worked for you?
Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.
Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.
40 Comments
I just wanted to thank you for sharing this information and to ask you if you are still finding some improvement with Mestonin as a few years have passed since this post.
Hi Aimee! You’re welcome. I stopped taking Mestinon a couple years ago. My doctor said she viewed it as a temporary medication, so I tried going off it and did well. It is a well I would consider going back to, though.
Hi,
Has anyone here experienced blurry vision with taking Mestinon? The drug was working wonders for my POTS and exercise but was giving me blurry vision so I had to stop 🙁 Was wondering if anyone had a similar experience and what they did about it (alternatives to Mestinon?) Thank you.
My 16yo son was diagnosed with POTS in August of this year after suffering with symptoms since December of 2021. We believe it was precipitated from a previous Mono infection. He is currently taking 1g sodium chloride 3x/day, Propranolol 5mg 2x/day and an SSRI for depression. He was a nationally ranked swimmer and now can barely get out of bed and only feels better by mid-afternoon. We have tried Midodrine-only to make symptoms worse. We looked into a POTS clinic out of Texas, but after an initial consult we felt $7k was too steep for the program with no real data (just a pie chart of before/after 116 participants, seems low for a clinic dealing with POTS for 16yrs) or published studies to prove its efficacy. He is an anomaly as he is young and male. He has missed so much school and his swimming dreams are slipping away. We are feeling defeated since there is little known about this condition and fewer doctors who know and understand it in our area. I have to say my son’s pediatrician is the type of provider who likes to think outside the box and is willing to try anything to improve my son’s quality of life. I appreciate this blog post and will keep checking in to see if there is anything new we can try.
I’m sorry your son is struggling with POTS. That’s great that your son’s doctor is willing to think outside of the box and try things. That helped me a lot- to have a provider that was open-minded. I feel for your son missing school and swimming. I hope you and his doctors are able to find that right combo to get him on the right path. Take care!
Elsa,
I have suffered from POTS for over 50 years. As a teenager I passed out twice while playing basketball, and once while repairing a car engine. After months of cardiac tests, the Cardiologists passed me on to the Neurologists. The Cardiologists ran me on a treadmill until I passed out, and had no recordable blood pressure. At the National Institute of Health, I was diagnosed with early “Autonomic Neuropathy”. The Docs there said that was probably an autoimmune condition. I entered Med School as an MD/PhD student, determined to help others with same “neuro-immune” problems. Very quickly I began to have thyroid and salivary gland issues, which were of course immediately tagged as “autoimmune”. I then developed a chronic headache, a strange “mental fog”, and increasing fatigue. These developments had the Rheumatologists treating me as a Lupus patient. I had to drop out of Med School. Many decades passed, and my many friends who went forward to become physicians started telling me that I had Chronic Fatigue Syndrome. I started to do my own research, since I understood the “lingo”. I’ve probably spent 10,000 hours reading about POTS, ME/CFS, and CIRS (Chronic Inflammatory Response Syndrome). PoTS and ME/CFS are probably partly viral, and partly genetic. While CIRS is definitely due to bio- toxins like mold (Dr.s Heyman and Shoemaker). This is what helped me the most. Complete change of diet to organic foods only. A virus has/is damaging his mitochondria, and they should have as little to worry about as possible. No dairy. No gluten. No wheat. No processed sugar. Short half life Amphetamines have been a lifesaver for me on days where I am still exhausted. Mestinon helps the venous tissue push blood back to the atria. It’s great! Dr. Robert Systrone found that most chronic fatigue patients have inadequate atrial filling. LDN (low dose Naltrexone), Melatonin, Magnesium citrate, and (low dose) Trazidone help with sleep. I used to take Fludrocortizone (with K) to increase my blood volume. His adrenals will repair themselves on their own. Your son needs to address this before his condition becomes full blown Chronic Fatigue Syndrome or CIRS. He is very treatable now. Once entrenched these two diseases become a multi-decade struggle. Find out if he has CIRS. The Epstein Barr virus combined with mold might have pushed him into a CIRS response. Change his diet. A Chronic Fatigue Physician may even place him on an antiviral for awhile (Dr. Skip Pridken -Uni of Alabama, or dr. Jacob Tiitlebaum in New York). Try Florinef. Try low dose, low half life stimulants (Adderall), so he can start the day. Get his lymph fluid moving through his lymph nodes to help eliminate the remaining Epstein-Barr virus. Try pyridotigmine (Mestinon). my best piece of advice old be to begin seeing Pediatrition Dr. Peter Rowe at Johns —Hopkins in Baltimore. He is considered the best pediatric POTS physician in the US. I wish that my parents had all of these options, but heck, back then I was seeing Rheumatologists. Psychiatrists and Rheumatologists end up with all of the “mystery cases”, but yours is no mystery. If his physician is only treating him with a beta blocker, table salt, and an SSRI, you need to spend your retirement money to go see Dr. Rowe in Baltimore or Dr. Tiitlebaum in NYC. Both are super nice guys. Tiitlebaum contracted CFS in Med School. And has dedicated his life to treating it.
Hi! I just stumbled upon your blog after researching Mestinon. My 16-year-old daughter has significant POTS, among other things. We just tried a few days of low-dose Mestinon, and she experienced terrible stomach cramps—so much so that she stopped taking it. We’ll be in touch with her doctor about this, but I’m wondering if this is a side effect that decreases over time. Do you have any experience with this? (Our daughter has significant gastroparesis, and it would have been amazing if this drug had worked out….)
Thank you for sharing your experiences with others. I hope you’re feeling well. 🙂
Hello! First, I’m sorry your daughter is going through that. I do not know if stomach cramps decrease over time. I know the other GI side effects can (like diarrhea, nausea, etc.). I wonder… I hope your daughter’s doctor has insight into this, or perhaps has tips on how to make it more tolerable for her. I wish you and her the best.
Thank you for your kind words :).
Sherry,
It is normal, and she may need to send the medication to a “compounding pharmacy”. She may need to start with a dose as small as a grain of sand. A compounding pharmacy can do that. Also over 85% of Chronic Fatigue patients eventually end up with Irritable Bowel Syndrome. (I believe this is all due to a past or existing viral infection. ) She may have a bit of IBS starting, but it took me 30 years to notice that I had IBS. Dr. Skip Pridken ( a surgeon) and Dr. Carol Duffy found most of Pridken’s Chronic Fatigue patients had visible red streaks in their colon’s. Virologist Duffy found that the streaks were E-Barr or human Herpes#6 (I believe.) They have finished the final stage of a two drug anti-viral treatment for CFS. Dr. Chia at Stanford found the same irons. Many Fibro patients have difficulty starting Low Dose Naltrexone (only available at a compounding pharmacy.) But, after many months of dosage increases, most patients are thrilled with LDN. Dr.s Dantini (Florida), Tiitlebaum (NYC), Montoya (California), and Heyman (Virginia) all use anti-virals to treat these problems.
Started taking Mestinon (pyridostigmine) last week and it seems to be helping my resting heart rate, but not my POTS. My resting HR is hovering around 65-70 after being around 85 for nearly a year. However, instead of my HR going from 90 to 125ish upon standing, it’s going from 60-100. Has this happened to anyone else? Does it get better after more time or higher dosage? Thanks!
Hello! So it is helping your metrics, but you are not feeling better yet? Just clarifying :).
Correct. Getting all the same POTS symptoms just occurring at a different HR range. When I stand my HR still increases by around 40bpm and with sustained standing comes the lightheadedness, trembling, headache, etc.
Gotcha. I’m sorry it isn’t helping with those things at this point. Maybe someone will comment if they have experienced this too. If you are on Facebook, you could also check out one of the large POTS support groups and ask around for how long it took and at what dosage others started experiencing improvement.
How long did it take to see an effect? I took my first 1/2 tablet (30 mg) and felt nothing. Guess I was expecting a miracle. 🙁
Hm, I don’t remember exactly. I felt a difference within the first month but I don’t think it was immediate.
Thanks! Did you (or anyone else) ever have the sensation of a thumping pulse? I swear my eyes, head, neck, and chest/heart thump so hard. I can ‘see’ my pulse in my field of vision and can ‘hear’ my pulse all day, but especially in bed at night. Hoping this might help.
Yes, I get that sensation from POTS. When I would notice it would be: if I was sitting/laying for a while, and then would get up really fast to walk to the other room- I would get pre-syncopal and then that thumping (I would feel it like a pressure in my head and see it in my vision) would settle in until my body regulated itself. As my POTS has improved overall, so has that. I don’t remember if Mestinon directly impacted that because that symptom was more fleeting for me, so I wasn’t observing it as I evaluating the medication. I hope you get relief soon!
Yes, exactly! What has improved your POTS the most?
The top things have been: the Modified Levine Protocol (I finished this so now I do yoga, walking, and dancing- all of which I couldn’t do much of prior), Mestinon, a whole food diet (nothing extreme, just as much real food and variety as possible, mostly plants), massage therapy (amateur), physical therapy for vestibular ocular reflex dizziness, pacing (staying within my limits), and not getting sick (my body has been healing in the absence of constant setbacks due to illness). All of these things along with smaller things like meditation, and a host of other healthy habits over time- I have been getting gradually better, just a little bit at a time.
Thanks so much. I’m feeling a little less alone and more hopeful.
You’re welcome, I’m so glad :). Hang in there!!
I get this head pressure feeling too with headache and dizziness. What is it from? I would say it’s my worse symptom. It stays with me for a week and then I’m ok.
Hi Loretta! I’m sorry you’re dealing with that. I am not really sure what causes that head pressure feeling. I notice it after I get pre syncopal, so I wonder if it has something to do with the blood pressure changes in the head. But, I’m not a medical professional, so that is just conjecture.
I have had POTS, among other things, for over 18 years now. I just stumbled upon your blog and so appreciate all your helpful information! Thanks for taking the time to document all your experiences. It is also supportive to see someone my age balancing POTS, family, life, and work.
I too have tried this drug but it didn’t work for me. I wanted to share for anyone else reading – if you have asthma, use extreme caution trying this med. I only have heat, humidity, and exercise induced mild asthma and it made it hard to breath all the time for me. My allergist explained, in short, the med basically works opposite to an inhaler. My cardiologist was hopeful with me having mild asthma that it would work. That said, he only let me try it without direct medical supervision because my mom is an RN (back during a college summer break).
Hi Steph! Thank you for your kind comment :). Oh wow, I didn’t know it could have such an effect, thank you for sharing your experience. I’m going add that note to this post.
Thanks so much. I’m feeling a little less alone and hopeful.
I’ve had mild POTS for a decade, and after a while, I stopped doing research because nothing new was happening. Seems like in the last few years, I’ve missed a lot. I just spent 2 hours pouring over your blog. Thank you SO MUCH for all of this information!
I read that you’ve stopped propranolol. Did you ever take that with the Mestinon? I’ve been on 10mg propranolol 2-3x a day since going off Florinef in my first year of POTS, so nine years total. It works extremely well for my tachycardia. But my thigh muscles have had problems since my diagnosis, and the doctors at the time kept saying it couldn’t be because of POTS. I had every test imaginable, and nothing. When I go up more than one flight of stairs, my thighs burn horribly, like I just did 300 squats.
I’m just curious if you used propranolol and mestinon at the same time, and if so, what was that like? You also said you experienced the same sort of muscle issues with the stairs and have noticed improvements. Can I ask how significant?
Sorry for the novel, I’m just really excited by the potential to not experience that anymore!
Hi Mel! I am so glad that you found useful information. I did not ever overlap with propranolol and Mestinon, so I can’t speak to that. Here is how I would compare how Mestinon has improved that burning you describe: Before, I would be doubled over at the top of the stairs feeling like I did a sprint race with that “booty lock” burn in my muscles. It would also happen after other run of the mill activities. I had a hard time doing upright cardio because of the burn as well. Or, lifting my arms above my head for an exercise…forget about it lol, my arms would become burning noodles. Currently- I would say it is greatly improved, but not gone. It will fluctuate. Some days, it is not a big deal. Other days, it is bothersome and fatiguing. However, even at its current worst, it is not like it used to be. Stairs are way better, the arms above the head thing is barely even a thing anymore, upright cardio is going great. To be more specific on the stairs, if it’s a day where it’s bothersome, the burning still doesn’t last as long and is less intense. Mestinon has been a really useful bridge for me to get in peak condition as well, which also helps the burn. Haha, novel away by all means :). I wish you the best!
This is such amazing news. I think I saw that you’re in Chicago? I’m based there, although currently, I’m in Wales with my fiance. POTS is not as well known here (at least, in my experience with GPs), so when I come back to Chicago in January, I’ll head immediately to my doctor and ask about Mestinon. I’m beyond excited that maybe I could walk up the stairs or go up a hill like I used to, or at least, more effectively.
It’s been the single biggest challenge with POTS for me, because I kept getting told that there was no explanation for it. One doctor called me a couch potato, which made me beyond angry.
I had already checked out P.volve before reading your post, and I’m going to try that. I can mostly do upright exercises, but I just get tired easily. I’ve found boxing, rowing, and VR to be the most tolerable. I use an Oculus to play Beat Saber, but I’m not sure that would work for all POTS patients, since it’s a lot of arm movements as well. I’ve used a leg press for months at a time trying to condition my thighs so they would burn less, but nothing worked. I’m so psyched for a solution. Thank you again!
Cool, that’s coming up soon, I hope it ends up working out for you! I can’t believe that doctor called you a couch potato, that is infuriating. It’s appalling to me how many POTS patients get mistreated like that. Lol, I’ll get on a soapbox so quick about that, so I digress… I’m glad you found some exercises that you can tolerate :). You’re welcome, have a Happy Thanksgiving!
Hi. I have pots for more than 10 years. My savior is good old atenolol, cardiac selective beta blocker- 1/4 to 1/2 (25mg.). Don’t understand when doctors prescribe other “lols”. Propranolol affects brain. Metoprolol had an opposite of what is expected effect on me. I take Verapamil when I have “heart attack “ chest like pain- 20 mg . It also helps with irregular heartbeats. Midodrine does raise BP a bit, but for extremely short time. I take it only when nothing else worked. I have AirRelax compression leg sleeves, when my BP is too low I use for 1 hour. Haven’t tried Mestinine. For pain I take LDN- out of pocket prepared in compounding pharmacies-works 100% for bone/ muscle pain. L-Glutamine for muscles. VibraPro Mini platform- every day, sometime 2 min only. But when I can -6 min. Joovv red light therapy full body daily. TENS for vagus nerve stimulation when I have mental agitation. Hydrogen peroxide inhalation’s using nebulizer after being outside. Supplement have no effects, and I tried so many you never heard of. Licorice root does help with energy and raises BP. Corlanor has no effects on my pots symptoms. Nothing works for sleep- I have fragmented frequent awakenings like from a jolt every night. Sleep study showed- central apnea, sympathetic activation, REM non existent, sleep index 37%- must be 85 and higher to survive. Melatonin has no effect on my sleep as well other numerous remedies incl CBD oil. I checked EMF levels and measured dirty electricity levels in my bedroom- did some adjustments, my bed is 2 feet from every wall and I flip my bedroom breaker for the night. No WiFi or phone in my room for the night.
Awesome, thanks for sharing the things you have tried. I always think it’s helpful to hear of what other people are doing because you can pick up new ideas of things to try that way.
Thank You! 🙂
Thank you for a nice blog!
Wish you would skip the video / moving pictures in the text. As you would know it is very disturbing and fatigueing for ME sufferes to read with moving pictures in the text.
Thanks!
Hello! Thank you! I am glad you brought that to my attention, I didn’t consider that. I will work on fixing this ASAP.