Mestinon stopped working?? (But it was helping so much!)

[jinglebean]

I recently started Mestinon about a month and a half ago. It was amazing at first! I also have gastroparesis that hasn't responded to other medication, and it had me digesting food better than I had in decades! I could tolerate sitting up longer, especially during the day when I'm usually at my worst. My energy levels and brain fog were improved to the point I felt almost normal for parts of some days. But the effect only lasted a few weeks....

I first started with 15mg 2x/day. On the first day my stomach was actually moving and making digestive sounds, which was like an actual miracle to me. The next day the effect was less, and by the end of the first week I didn't notice it anymore. By the second week there was still a mild benefit and my doctor had wanted to increase it then anyhow. So went up to 30mg 2x/day, and this time I only felt a mild stomach movement/sounds on the first day. Now it's 3 weeks at that dose and it's not doing anything anymore. I've been back to feeling so lethargic and such bad brain fog that I can't think straight during the day, and have been back to lying on the floor unable to think if I'm sitting upright. I'm sad and feel lost again.

I've looked through some of the other posts about Mestinon and of course it works for some and doesn't work for others, but I didn't see anything about it working great and then stopping abruptly. Has anyone else experienced this? Did it get better again? Did you increase the dose? What dose worked for you long term? 

Basically I'm asking, is there any hope for Mestinon to work again?

 

(I'm on Florinef but it doesn't help and unable to take midodrine for other reasons. I also don't have tachy symptoms/POTs, but orthostatic hypotension and postural intolerance, so all the symptoms those.)

[MikeO]

@jinglebeanThis so sounds close to my experience with Mestinon. my dosage started out at 30mg 3x/day and i was simply amazed that my stomach started growling and started digesting food much better, has not done that in years. Also the fatigue greatly improved along with my gait "more bounce to my step".

But just like you i have noticed it has not been working so well at least with the GI and it maybe a little aggressive than i care for. For the fatigue it is still working great if i miss a dose i do notice becoming more lethargic with more pain in my neck and lims. this has been helping with the orthostatic hypotension.

For now i am only doing a trial so today's my last day and will be off of it for two weeks just to see what i get out of that then follow up with the Dr.

[Chiara]

Hello, I made the same expiriences. I have no tachycardia too and normally high BP. So I stopped Mestinon. I took fludrocortison too, but it  gaves me very bad muscle weakness and more symptoms. So I stopped it too. In the moment I take Ramipril 2,5 for high BP and I feel much more better. (But I stopped working too, so it could be, that all interventions together helps...) 

[Jyoti]

@MikeO Wondering what happened when you went off the Mestinon for two weeks?  Did you end up dropping it or did you go back on it?  I am getting ready to give it a go and am curious about others' experiences.

[MikeO]

8 minutes ago, Jyoti said:

@MikeO Wondering what happened when you went off the Mestinon for two weeks?  Did you end up dropping it or did you go back on it?  I am getting ready to give it a go and am curious about others' experiences.

Hi @Jyoti When i stopped the Mestinon nothing bad happened but the benefits and or side affects did go away fairly quickly (mestinon has a short half life) I did end up going back on it for a couple of months or so but ran into issues with my bp's spiking. We are sure it was not a problem with the drug but long story short ended up going thru a lengthy drug change up. I did leave the door open to go back on it but right now is not a good time for me.

We did see a slight increase in diastolic bp's and the frequency of my whooshing did decrease upon standing along with milder orthostatic episodes. I do feel i felt less fatigue but who knows why that would be (higher bp's?) i did notice more saliva (wetter mouth) but not drooling wet, i did like that.

Word of warning mestinon can be quite the laxative so don't be startled taking your first couple of doses and be sure to take it along with food (more than just a salitine) and you should be fine.

Hope this helps.

[Jyoti]

Thanks @MikeO for your update.  I am trying not to be too hopeful--some of the reports I read here are so positive--but I have (of course) been down that road before!  So far, no med has worked for me, but when I read of David Systrom's recent Mestinon/ME/CFS study (https://journal.chestnet.org/article/S0012-3692(22)00890-X/fulltext) I thought I HAD to give it a go.  

It sounds like you got some real benefit from Mestinon, and I hope that whatever combo of meds you have arrived at for the moment is working reasonably well.  Such a crazy balancing act.  

[MikeO]

1 hour ago, Jyoti said:

Thanks @MikeO for your update.  I am trying not to be too hopeful--some of the reports I read here are so positive--but I have (of course) been down that road before!  So far, no med has worked for me, but when I read of David Systrom's recent Mestinon/ME/CFS study (https://journal.chestnet.org/article/S0012-3692(22)00890-X/fulltext) I thought I HAD to give it a go.  

It sounds like you got some real benefit from Mestinon, and I hope that whatever combo of meds you have arrived at for the moment is working reasonably well.  Such a crazy balancing act.  

Your Welcome Jyoti. I would give Mestinon at least a two week trial and see what you get. the ME/CFS study is interesting (never read that before) may explain my feeling that my fatigue improved.

I know what you mean about being hopeful that a med will work. over the years i learned not put any expectation on it but to give the med some time.

I hope that you have some success with the Mestinon. Let me know how it works for you.

Best 

Mike