How long does Mestinon take to show benefits?

[DonPepe]

Fingers very much crossed! FWIW--I have settled on my small dose, have been on it for more than two years and while it has not been a miracle, it has provided solid, unwavering support the whole time. No poop out.

 

[DonPepe]

It’s early days but I really think Dr Systrom is onto something here. I’m still on Abilify but Mestinon seems to have a broader and more consistent effect or benefit.

I’ve always thought the vagus nerve was involved somehow.

 

[DonPepe]

What AI has to say about the link between vagus nerve and dopamine.

The vagus nerve plays a significant role in modulating dopamine systems in the brain. Impairment of the vagus nerve can lead to inhibition of dopamine systems, which may be linked to early mental changes in Parkinson's disease[1]. Vagus nerve stimulation (VNS) has been shown to enhance dopamine release and improve reward-seeking behavior, suggesting a potential therapeutic role for VNS in conditions like depression and epilepsy[2][3]. Additionally, VNS can modulate immune responses through dopamine production, indicating a complex interaction between the vagus nerve and dopamine pathways[5].

Sources
[1] Chronic impairment of the vagus nerve function leads to inhibition of ... https://pubmed.ncbi.nlm.nih.gov/23406746/
[2] Vagus nerve stimulation boosts the drive to work for rewards - Nature https://www.nature.com/articles/s41467-020-17344-9
[3] vagal nerve stimulation in humans improves reinforcement learning ... https://academic.oup.com/braincomms/article/3/2/fcab039/6170649
[4] Self-Administration of Right Vagus Nerve Stimulation Activates ... https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2021.782786/full
[5] Dopamine Mediates the Vagal Modulation of the Immune System by ... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949155/

 

[DonPepe]

This may be why Abilify works for me also. Could vagus nerve damage cause catastrophic dopamine dysregulation (research suggests it can) which may be temporarily or in some cases permanently restored to a degree by Abilify?

The Mestinon then corrects to a degree vagus nerve damage resulting in more stable dopamine levels.

 

[Mary]

If it would be helpful to you for me to share the ways I have benefited from Mestinon, let me know.

@Zebra, I'd be interested to know how mestinon has helped you

 

[Mary]

@Rebeccare - are you still taking mestinon? For some reason I thought you had started it and then stopped due to adverse effects, but I may be completely off-base here!

@Jyoti - I'm really glad to hear it's helping you!

and @DonPepe - I'm very glad for you also!

I am going to look into this for myself. I'm extremely sensitive to meds but this one seems like it might be a good thing -

 

[DonPepe]

@Rebeccare - are you still taking mestinon? For some reason I thought you had started it and then stopped due to adverse effects, but I may be completely off-base here!

@Jyoti - I'm really glad to hear it's helping you!

and @DonPepe - I'm very glad for you also!

I am going to look into this for myself. I'm extremely sensitive to meds but this one seems like it might be a good thing -

For me it’s better than Abilify. I’ll be thrilled if my progress continues.

 

[Judee]

@leokitten would this help you with the abilify too.

 

[Rebeccare]

@Rebeccare - are you still taking mestinon? For some reason I thought you had started it and then stopped due to adverse effects, but I may be completely off-base here!

You remember correctly! I felt breathless, exhausted, and chilled. I stuck with it for a few months in the hopes that things would improve. Then within a day or two of stopping I felt much better. It's been suggested that I might want to try again, but start on a lower dose and increase more gradually. I don't know if I want to do that right now (I've also tried another medicine, midodrine, that did help me feel better), but I'm still keeping my eyes out for the results of Dr. Systrom's research.

Like all meds, I guess midodrine isn't for everyone. But it seems to help a lot of people, and I'm glad for that!

 

[Zebra]

I'd be interested to know how mestinon has helped you

Hi, Mary! Hope you are doing "OK".

Several years ago, Mestinon was prescribed to me by three different doctors at roughly the same time, so I was interested to see what it might do.

1) Neurologist prescribed for muscle weakness. It helps!

2) Autonomic specialist prescribed to induce sweating. I have severe, as in dangerous during summertime, anhidrosis. I am now able to sweat a bit under my arms, but nowhere else. So, it's been less successful in this area.

3) GI motility specialist prescribed for esophageal dysmotility and constipation. I credit this medication for helping me eat (a modified diet), and poop, and maintain a mostly normal BMI. When I start losing weight it's usually due worsening of systemic illand not because I can't swallow/eat.

I've been on this medication for about 6 to 7 years, so I don't think about it too much, but ... the last time I had to refrain from taking it for 48 hours before a test, I felt awful. So, that was an interesting opportunity to reflect on what Mestinon might be doing for me.

It works on dysautonomia in ways I don't understand, and when I am asked to skip it for a few days, my HR goes up, I feel lightheaded, my abdomen hurts and bloats, my legs are shaky, and I feel horribly weak throughout my body.

Life is just better on it.

 

[Jyoti]

Life is just better on it.

Ahh....the wonders of chemistry! Isn't it great when it finally works?

I take so little, but I am made aware of the positive effects when I have to stop it for one reason or another. Which is rare.

@DonPepe -- marvelous that it is making such a difference for you! I can't say it has done as much for me as it has for you and @Zebra, but there is definitely a little and cherished bump up of capacity I get from it.

@Rebeccare --do you remember how much you started on?

@Mary--I haven't heard of anyone crashing badly from trying Mestinon (though there is probably a contingent out there), so it might be worth a go.

 

[Mary]

@Rebeccare , @Zebra , @Jyoti - thanks so much for your replies, they’re very helpful!

@Zebra and @Jyoti, would you mind telling me what doses you’re on?

 

[Jyoti]

@Mary—I take 45 mg per day. Split: 30 in the morning, 15 more at noon.

 

[Zebra]

@Mary

I take 60 mg 2 to 3 times a day.

I believe when initially prescribed to me, my neuro had me start with half a tablet (30 mg) 2 x a day and work my way upward.

I believe the doses must be at least 4 hours apart.

 

[Mary]

@Zebra , @Jyoti - thanks so much - This is all very helpful!

 

[JES]

This may be why Abilify works for me also. Could vagus nerve damage cause catastrophic dopamine dysregulation (research suggests it can) which may be temporarily or in some cases permanently restored to a degree by Abilify?

The Mestinon then corrects to a degree vagus nerve damage resulting in more stable dopamine levels.

So Mestinon helps you with core ME/CFS symptoms as well? I have had the picture that Mestinon is more helpful for OI/POTS symptoms. For ME/CFS lots of people report at least temporary benefit with Abilify, but have found less success stories with Mestinon.

 

[Rebeccare]

@Rebeccare --do you remember how much you started on?

I started on 30 mg three times a day, then after a month went up to 60mg three times a day, and then after another month went on a 180mg extended release capsule once a day. I did slightly better on the extended release capsule.


I actually bookmarked this old post in case I ever wanted to try taking things more gradually:

I'm thinking of giving it a go too. This is what I was advised as I am sensitive to meds too
* Start with 1/4 tab (15 mg) once a day
* Increase by 1/4 tab every 7 days as tolerated.
* 1/4 tab two times a day
* 1/2 tab in am and 1/4 tab in pm
* 1/2 tab in am and 1/2 tab in pm
* continue to increase in this fashion up to 60 mg two times a day based on effects/side effects
* Monitor BP and hr

 

[Wayne]

I’m taking 30mg three times a day. If I’m going to see any beneficial effect from the drug then when is this likely to occur?

Hi @DonPepe -- My understanding is Mestinon is meant to increase acetylcholine levels, is that correct? A possible substitute might be Huperzine A, a naturally occurring substance (moss) found in nature which breaks down the enzyme that breaks down acetylcholine, thus increasing acetylcholine levels in the body.

I started taking Huperzine A about 5 years ago, and noticed a notable improvement in my attention span while on the computer within the first 1-2 hours of taking my first dose. I've taken it daily since then, and find it helpful. Since you haven't noticed any improvements with Mestinon yet, and I noticed improvements with Huperzine A within an hour or so, it might be worth considering giving Huperzine A a try and see what happens.

I asked an AI website to describe Huperzine A, and came up with the following:

Huperzine A is a naturally occurring sesquiterpene alkaloid found in the firmoss Huperzia serrata and other species of the Huperzia genus. It is known for its potential neuroprotective properties and is primarily used to enhance memory and cognitive function, particularly in conditions like Alzheimer's disease and age-related memory impairment.​

Pharmacology and Mechanism of Action​

Huperzine A functions as a reversible inhibitor of the enzyme acetylcholinesterase, which breaks down the neurotransmitter acetylcholine. By inhibiting this enzyme, huperzine A increases the levels of acetylcholine, which is crucial for memory and learning processes. Additionally, it acts as an NMDA receptor antagonist, which may contribute to its neuroprotective effects.​

Therapeutic Uses​

Huperzine A is used for treating Alzheimer's disease, enhancing memory and learning, and managing age-related memory decline. It has also been explored for treating myasthenia gravis, a muscle disease, and for protecting against nerve-damaging agents like nerve gases. Despite its potential benefits, the quality of clinical evidence supporting its use is variable, and findings from studies should be interpreted with caution.​

Synthesis and Availability​

Due to the limited natural supply and challenges in cultivating the plant sources, huperzine A is often synthesized in laboratories. It is available over the counter as a dietary supplement in many countries, although it is regulated as a drug for Alzheimer's treatment in China.​

Side Effects and Interactions​

Huperzine A can cause mild cholinergic side effects such as nausea, vomiting, diarrhea, muscle twitching, and increased saliva production. It may interact with medications for Alzheimer's disease, potentially increasing their effects and side effects. Caution is advised when combining it with other cholinergic or anticholinergic drugs.​

Conclusion​

Huperzine A is a compound with potential therapeutic benefits for cognitive enhancement and neuroprotection. However, its use should be approached carefully, considering possible side effects and interactions with other medications. Further high-quality studies are needed to fully establish its efficacy and safety profile.​

 

[DonPepe]

Hi @DonPepe -- My understanding is Mestinon is meant to increase acetylcholine levels, is that correct? A possible substitute might be Huperzine A, a naturally occurring substance (moss) found in nature which breaks down the enzyme that breaks down acetylcholine, thus increasing acetylcholine levels in the body.

I started taking Huperzine A about 5 years ago, and noticed a notable improvement in my attention span while on the computer within the first 1-2 hours of taking my first dose. I've taken it daily since then, and find it helpful. Since you haven't noticed any improvements with Mestinon yet, and I noticed improvements with Huperzine A within an hour or so, it might be worth considering giving Huperzine A a try and see what happens.

I asked an AI website to describe Huperzine A, and came up with the following:

Huperzine A is a naturally occurring sesquiterpene alkaloid found in the firmoss Huperzia serrata and other species of the Huperzia genus. It is known for its potential neuroprotective properties and is primarily used to enhance memory and cognitive function, particularly in conditions like Alzheimer's disease and age-related memory impairment.​

Pharmacology and Mechanism of Action​

Huperzine A functions as a reversible inhibitor of the enzyme acetylcholinesterase, which breaks down the neurotransmitter acetylcholine. By inhibiting this enzyme, huperzine A increases the levels of acetylcholine, which is crucial for memory and learning processes. Additionally, it acts as an NMDA receptor antagonist, which may contribute to its neuroprotective effects.​

Therapeutic Uses​

Huperzine A is used for treating Alzheimer's disease, enhancing memory and learning, and managing age-related memory decline. It has also been explored for treating myasthenia gravis, a muscle disease, and for protecting against nerve-damaging agents like nerve gases. Despite its potential benefits, the quality of clinical evidence supporting its use is variable, and findings from studies should be interpreted with caution.​

Synthesis and Availability​

Due to the limited natural supply and challenges in cultivating the plant sources, huperzine A is often synthesized in laboratories. It is available over the counter as a dietary supplement in many countries, although it is regulated as a drug for Alzheimer's treatment in China.​

Side Effects and Interactions​

Huperzine A can cause mild cholinergic side effects such as nausea, vomiting, diarrhea, muscle twitching, and increased saliva production. It may interact with medications for Alzheimer's disease, potentially increasing their effects and side effects. Caution is advised when combining it with other cholinergic or anticholinergic drugs.​

Conclusion​

Huperzine A is a compound with potential therapeutic benefits for cognitive enhancement and neuroprotection. However, its use should be approached carefully, considering possible side effects and interactions with other medications. Further high-quality studies are needed to fully establish its efficacy and safety profile.​

Yesterday and especially last night I had some weird side effects I felt really spaced out and I was getting pins and needles in moth arms lacked energy and felt weak. I think I’ve reiterated up far too quickly. Will be lowering back down to 45mg twice a day.

The Huperzine A is a real alternative Wayne and thanks for the heads up.

Will keep the board posted.

 

[DonPepe]

So Mestinon helps you with core ME/CFS symptoms as well? I have had the picture that Mestinon is more helpful for OI/POTS symptoms. For ME/CFS lots of people report at least temporary benefit with Abilify, but have found less success stories with Mestinon.

It clears my brain fog at certain doses. Just trying to find the optimum levels.