Mestinon

I convinced my GP to let me try Mestinon about 18 months ago, but never got as far as actually trying it until now. I have been holding off because I didn't want to muddle the results by starting it too close to my last rtx dose or while I was starting out on LDN.

While LDN is extremely helpful in reducing pain and the intensity of PEM, POTS or OI of some sort are among my more debilitating symptoms, so I'm hoping that Mestinon might help even just a little bit. Seeing as I'm spending most of my time in bed atm, any increase in activity should be easy to spot.

I will be tracking activity levels and HR every day using my Polar HR monitor and my Oura ring (I do that anyway). Starting carefully on just 15 mg to make sure that I tolerate it and will build slowly from there. I've started this thread to track this n=1 trial Feel free to share your own experiences with Mestinon here, or anything else that might be relevant.


DAY 1: 15 mg. Feeling a little bit jittery, but that could just be the coffee.

Will report back in a week or so, or whenever there is something to report.

 

Good luck @andypants, I hope it helps.

I'm glad the LDN is helping with pain. A dear ME friend has very severe neuro pain, allodynia, is it this sort of pain which the LDN is helping?

 

I’m on Mestinon, started it in December, has really helped with some symptoms (tachycardia, pots and anxiety) I was lucky enough that it seems to improve IBS too, but I find if I go as high as my gut would like I get more mast cell symptoms. I think it’s competing with ketotifen. Still tinkering with dose. Still bedbound though....was hopeful initially ially it might get me up, but looks like not sadly.

 

Thank you @andypants, for your post about this. I hope the Mestinon really helps!

Sorry it hasn't helped @Raci2000 as much as hoped and expected.

It will be interesting to see Dr. David Systrom's study on OI/ME/Mestinon when it comes out.

Good luck with the Mestinon, @andypants!

 

Yes, that is exactly the kind of pain it seems to be most effective against for me. After the first couple of weeks when it made me slightly worse and disrupted my sleep it has also been more or less side effect free.

Not a lot of data on this, but from what I can tell it's 50/50 who find it helps and not. My father's girlfriend takes it for FM and has been helped immensely.

Thank you for sharing your experience! I know Mestinon can affect the use of a long list of other medications, among other things immune suppressing drugs which is why I wanted at least a year between the last rtx dose and starting Mestinon. I'm not familiar with ketotifen, but you should ask your doctor about that. Glad Mestinon gave you a boost, even if it didn't get you out of bed at least you are hopefully less miserable staying in it I would be interested to hear how you get on after another month or two

 

Thanks, that's really good to know, I'll pass it on to her.

 

Good luck, @andypants! I really hope the mestinon helps you get out of bed to enjoy the spring, when it arrives in Norway

 

Does anybody know of a UK cardiologist prescribing Mestinon? I was hoping to be referred to Dr Jamie Fulton in Plymouth from Bristol but I've just found out that he's retired. Apparently he's coming back part time but won't be able to see people out of the area. I've been waiting for this appointment for months so I'm really gutted. Bristol cardiology recently said they are unable to do it because the pharmacy won't let them. Any info welcome even if it's private doctors. Thanks.

 

DAY 18: A short update.

Dosage increased to 3x 15 mg per day. Increased again to 3x 30 mg from today.

Had a little gastrointestinal discomfort when I took it on an empty stomach, but this was easily resolved by taking it with some food. After a few days I could go back to taking it on an empty stomach. The same thing happened today when I increased the dosage. I do get a bit jittery when I increase the dosage, but that too resolves after a few days.

I have been slightly more active in the last couple of weeks, but I think it's too early to tell if there is any connection with Mestinon. I have been home alone most of the time as Mr. Pants is away a lot these days, and that will often make me more restless and wired because my routine and sleep are disrupted. We're also really starting to see a big shift in hours of daylight now, which I know from experience will affect my energy levels positively.

One very clear effect is that the incessant need to pee at night is completely gone. This could be affected by my diet too, I have been working my way back to keto and a smaller eating window this last month. Still, it stopped completely from the first day on Mestinon. In any case this is a big improvement.

No noticeable effect on cognitive abilities or brain fog.

 

DAY 31: Update

Current dosage: 3x 45mg (135 mg daily)

The side effects continue to be few and small, mostly making me a little jittery when taken on an empty stomach but little else. However, the effects of the drug appear to be nonexistent, and so I have decided to discontinue Mestinon from today. I know some people take as much as 180 mg, but since I haven't felt any effect at my current dose it seems unlikely that another 45 mg would make a difference, at least in my current state.

It will be interesting to see if I notice any changes coming off it, but I doubt it. Will report back if I do experience anything. I will possibly give it another chance during the summer when I'm usually more on my feet, but for now this trial is concluded

Conclusion: no clear effect for andypants!

 

Thanks for letting us know @andypants . The null reports are every bit as important as the positive ones .

 

I had a brief look at randomized controlled trials on Mestinon (Pyridostigmine) to treat orthostatic intolerance.

I found one on orthostatic hypotension, orthostatic tachycardia and one on exercise intolerance in ME/CFS (the recent trial by Systrom and colleagues). All three reported positive results but they only looked at the acute or short-term effects.

 

I was thinking about how people who have benefited from drugs tend to be far more likely to share the results. Which made me think I should share my negative results to this thread.

I tried Pyridostigmine started from a very low dose. Within a couple days, I started having strong MCASesque allergic reactions, and had to stop the drug before I got to any sort of useful dose. I can’t be sure the drug caused this, as the allergic reactions are still happening 6 months later (although attenuated since I stoped the drug), but I never had chronic allergic reactions like this before trying the drug.

 

I just wanted to report a positive outcome, for what it's worth.
I've been on fludrocortisone, midodrine and beta blocker (started with propanolol, switched to nebivolol) for POTS for about half a year with "statistically significant" effects, but rather mild improvements to QoL.
A week ago I started Mestinon and it's the first time that my heart rate isn't above 110 while standing/walking. It's hovering at mid 80s at times even!
Nothing short of a revelation so far. Feeling much less out of breath and no chest tightness, gone seem the days where a simple walk to the bathroom feels like a marathon.

 

What does this mean?

 

That the three meds managed to reduce my standing HR during daily life from 140 to 120 or so (resting supine still from 70 to 60) but that had not impacted my quality of life much.

I had a table tilt test done (on all meds) about 10 days ago before starting the Mestinon and it was aborted after 20 mins due to BP suddenly dropping, HR steadily increasing to 140 BPM. Initial upright HR was around 110, resting supine around 65.

 

Thank you! I was wondering how one person could have a statistically significant change, but I realise now that you probably meant something like ‘objectively measurable change’.

I’ve had the same experience on 25mg metoprolol depot. Went from 160 bpm to 130 bpm when standing for 3 minutes. Less palpitations, but not other meaningful improvements in PoT related symptoms.

 

In this case it would likely be statistically significant (as well as objectively measurable), as I'm tracking my heart with the visible app and the polar verity sense and have many data points for unmedicated vs medicated - enough to show a statistically significant difference between unmedicated vs medicated. Not that I've done it, but quite certain it would be statistically significant. In this case it's one person, yes, but what I'm comparing with each other are many many data points, hence statistics would likely be viable.

Have you tried mestinon at any point?