mestinon vs LDN

[tiredgirl928]

Hi all! I have just received prescriptions for mestinon and LDN (yay!!). Has anyone taken both of these medications? Should I start them at the same time or try one for a few months and then add the other? If I do that, which should I start with first?

I would also appreciate any information on dosing/ what has been useful for other people with using these drugs. Thank you so much in advance.

 

[Wishful]

It depends on which symptoms you're trying to alleviate. For me, LDN blocked pain, but didn't do anything else. It has other effects on other people. Really, you might as well flip a coin to see which to try first. Yes, you should try one first, to avoid confusion of which is doing what. Then try both together, to see if they have any synergistic effect.

If LDN works for you and you want to minimize the dosage, taking it sublingually allowed me to reduce my dose by ~ 1/3. I had no problems starting at 4.5 mg, but others did have problems and started with much smaller doses. For me, <2.25 mg had no effect, and over 6 mg (I think) also had reduced effect. There seems to be a fairly narrow range of effectiveness.

 

[ryan31337]

Start low and go slow with Mestinon. Expect some side effects. In the beginning I got mild headache, muscle twitches, sweats, excess salivation and tears - I needed to use the bathroom more frequently too. Stick with it though, they've almost entirely gone for me now despite reaching full dose.

The advice I got from docs was 2.5mg 30mg once a day, slowly ramping up to 5mg 60mg three times a day. I find the side effects more noticeable if I take it on an empty stomach.

I would introduce one drug at a time, its best if you can work out what helps and what doesn't. Mestinon hasn't had a huge impact for me, but that could be because I already see a great deal of benefit from taking Ivabradine. I have noticed though that I'm seemingly able to tolerate a late night and less sleep since taking Mestinon, I no longer get that PEM type exhaustion after a late night, which is nice. Hopefully my baseline will shift in other ways over time too.

Good luck.

 

[ryan31337]

A correction to my post:

I got the dosages mixed up, I take liquid mestinon (lactose free) and referred to mg when I meant ml.

5ml = 60mg in this formulation, so my equivalent tablet doses were 30mg once a day, slowly ramping to 60mg three times a day.

 

[tiredgirl928]

Start low and go slow with Mestinon. Expect some side effects. In the beginning I got mild headache, muscle twitches, sweats, excess salivation and tears - I needed to use the bathroom more frequently too. Stick with it though, they've almost entirely gone for me now despite reaching full dose.

How long did it take for these symptoms to go away for you? I am experiencing something similar after starting LDN, as well as increased muscle weakness that has left me bedbound for the time I've been taking it.

 

[ryan31337]

Can't comment on LDN, but for Pyridostigmine they were present most of the time I was increasing the dose, which was for about 6 weeks. They seemed to be more apparent if I took it on an empty stomach. By the time I got to max dose they had almost completely stopped.

Interestingly I noticed for at least the first few weeks my orthostatic symptoms were worse too. More tachycardia, more breathlessness, more fatigued, more dizzy on standing etc. After a few months I think I can now safely say the mestinon has overall improved these issues. I've noticed this with other drugs, there's a period of instability, before ending up helping eventually. I guess its an indicator they were having some effect.

Usually a day or so after overexertion (PEM essentially) my orthostatic symptoms are worsened, but I am noticing this far less now on Pyridostigmine. Its nice not to get dizzy every time I stand up when i'm particularly fatigued