Mestinon (Pyridostigmine)

[khaarina]

I am thinking about talking to my doctor about trying Mestinon. I would like to hear about any experiences with the medicene. Did it help? What symptoms did it relieve? Side effects? Other medications you took with Mestinon? Etc.

[corina]

Although not my magical med re being upright, it did wonders for me to keep me warm. I really liked it. I had to take a stomach protector with it and was on bb's, ritalin and paxil at the same time. Hope it will help you when you decide to give it a try!

[hholmes13]

Mestinon has been wonderful for me! I was scared to try it because my stomach gets upset so easily. However, I had no negative side effects. The only odd effect is random muscle spasms but that doesn't bother me. It took about 6 weeks to start working, but it helped with my dizziness big time. I had 24/7 dizziness for almost 6 months straight last year with no reprieve even when laying down. It was AWFUL. The Mestinon helped with that. It also controls my tachycardia without slowing things down too much. The bb I was on was working too well (even only taking 5mg) would lower my hr to 38. I also was feeling like food was not moving very fast through my body and would get bloated and full with very little food. The Mestinon actually helped give me a little bit of an appetite back and helped me eat more comfortably. I also take Midodrine with it. I hope it can help you too! Good luck!

[Leigh8]

@hholmes - what is your dosage of mestinon?

[Guest Alex]

I'm currently taking 45 mg pyridostigmine - 30 mg in the AM and 15 more in the PM. In the past I took as much as 90 mg spljt in 3 doses (45, 30 and 15 mg at 8 AM, 12 PM and 4 PM). While on the higher dose, I was also taking 20 mg propranolol (10 mg AM and 10 PM) and 0.2 mg florinef (0.1 mg AM and 0.1 mg PM) as well as klonopin (max of 1 mg a day). I've recently come off everything except for the mestinon (mainly because of side effects I could no longer tolerate and to the fact that the meds were actually doing me more harm than good).

I guess the mestinon helps with my tachycardia - I've even had days when the above combo of meds sent me into brady (50 bpm while walking around at a relatively brisk pace) - but I'm not exactly sue how much. I might consider coming off all my meds in the near future just to see what my baseline is.

Side effects i've been dealing with - moderate to sometimes severe stomach and intestinal cramping, loose stools within minutes of taking the pills, muscle cramps in all muscles (the cramps in my tongue are the most weird things), excessive sweating, excessive salivation - it's borderilne drooling :(blurred vision, a sort of lightheadedness (similar to feeling drunk or stoned...even though I don't exactly know what being drunk or stoned feels like), running nose, excessive tears, some mild shortness of breath, and I can't really think of anything else now.

All the side effects from mestinon are short lived (I am not quite sure about this but I think it has a relatively short half life therefore the need for several doses during a day) and in my case more tolerable than those I experienced from all the other meds I've ever tried.

If you search the forum for older posts you should be able to find a lot more info from others who have taken mestinon...good and/or bad.

Best,

Alex

[ramakentesh]

Mestinon gave me about a 30% improvement in dizziness and presyncope. Less probably now over time and I plan on eventually giving it a rest so it starts working better again. it probably effected tachycardia but I dont really monitor that much nowdays.

In terms of side effects I got none other than euphoria the first time I took it strangely!

I was on 60mgs three times, then twice a day. it seems to work with something else. if you take midodrine at the same time as an example.

[hholmes13]

Leigh8 I built up to one 60mg tablet 2x each day. I started with a half tablet and added an additional half each week. I am allowed to take it up to 3x per day but since twice worked, I didn't want to push my luck with not having side effects.

[Kellysavedbygrace]

I have been on Pyridostigmine (60 mg 2x a day) since March 2011. It took a while to build in my system and it causes no noticeable side effects at first. I did not notice it's benefits or side effects until I stopped taking it.

It definitely helps w the pre syncope feelings as well as fatigue. When I stop taking it these return more prominently. I also notice that it reduces my sweat ability and increases salivation. I have no stomach issues with it and only once did I note that Euphoric feel- it was when I was having a good day (low symptoms) and 15 mins after taking I was giddy for about 30 mins. This was only one time back in December.

As a side note I learned yesterday that potatoes (a nightshade vegetable) are high in alkaloids that inhibit cholinesterase, the enzyme that is a catalyst for acetycoline. This is exactly what Mestinon does. And interestingly I've been craving potatoes for the last year. I thought it was their high potassium content but now I wonder. So how many potatoes does it take to equal 1 60mg Mestinon tablet?

[ramakentesh]

I'm Celtic so potatoes rock.

[Angela]

I eat a potato every day,no lie.

[issie]

I'm Celtic so potatoes rock.

Irish/English and I could live off potatoes. Interestingly, read an article about a guy who was trying to prove how healthy potatoes really are for a person. When he started the experiment of a good many days (cant' remember exactly) of only potatoes - he was over weight, had high cholesterol, issues with all sorts of things. At the end of the experiment - most of his bad levels had come down to normal and he lost weight and was so much healthier.

Issie

[Kellysavedbygrace]

Funny. Potatoes get such a bad rep and even on the site link below potatos are discouraged for those with nervous system disorders and those with joint problems. I have both so as I'm reading this I'm questioning, "Oh no! Should I stop eating potatoes?". Then further down it explains how these alkaloids cause problems....

Hah! That's what my Mestinon does! Can u believe?

Te discussion about calcium depletion's interesting but I don't seem to have issues with that so I wonder if calcium is something to be monitored for those of us on Mestinon.

Also, as a weird side note, while an inpatient at Vanderbilt, On their special diet I was served potatoes at least one or two times per day.

My top 5 ways to eat a potato:

- baked w a little butter, sprinkle of Parm cheese, scallions and Lots OF Salt!

- homemade hash browns- w butter, onions. Peppers and lots of salt and black pepper

- red potato salad w light mayo and onions and celery

- whipped with a little milk, a little butter and a moderate amount of salt

- boiled gold plain- served w a little butter and salt

Here's the link for you potato lovers:

http://www.whfoods.com/genpage.php?tname=george&dbid=62

[issie]

Yeah, you made me have to have them. My red potatoes were very tasty tonight. LOL!

Issie

[Kellysavedbygrace]

The power of suggestion! Lol

[Psalm 23]

I have been taking pyridostigmine since 2011. It was started at 30 mg tid and then increased to 60 mg tid a week or so later. I was very concerned about side effects as I am extremely intolerant to many medications but surprisingly I had none. I feel as if it helps me with fatigue, palpitations, tachycardia, gastric motility and maybe thermoregulation. In addition to pyridostigmine, I am on clonidine 0.1 mg bid, propranalol 5 mg bid, plaquenil 300 mg daily and neurontin 800 mg tid. Also 9 gms of salt.

I am a potatoe lover too.

Janet

[~elizabeth~]

I can't eat potatoes or any other food from solanaceous plants. I discovered this by pure accident, having spent a week off lots of different foods in preparation for urinary carcinoid/metanephrine tests. I'm also extremely intolerant of histamine and tyramine. It's not mast cell activation, in fact mast cell stabilisers and steroids made thing much worse. It's officially diagnosed now as amine intolerance, and exist on a very limited diet as a result. I'd previously assumed that my flushing after eating was due to something like vasoactive intestinal peptide, as it seemed to have so little correlation to what I ate, but when you realise quite how many foods are high in vasoactive substances it starts to make sense. If I eat potatoes, my mouth is immediately sore, then my throat goes in to painful spasm after swallowing the offending food.

[gjensen]

I do not know anything about anything, but I have always loved potatoes. One of my first vegetables put in the garden every year. I love a good looking well kept potato patch. Harvesting the baby potatoes was like digging for gold.

Strangely with all of this, I seamed to have developed a sensitivity to it. As soon as it hits my stomach, I get sick. I will try again, because I love my potatoes.

I did not do as well on the Mestinon. At the very least it gave me high blood pressure. If it was recommended that I try it again, and I was more stable, I would.

[Lethargic Smiles]

Has insomnia been an issue for anyone with Mestinon?

[Psalm 23]

No. It hasn't been for me. I have had insomnia issues on and off in the two and a half years of being on Mestinon but I don't believe there is an association. My disordered sleep is related to something else.

Janet

[corina]

No it hasn't been for me. Like Janet I do have insomnia issues on and off but don't link it to mestinon.

[Lethargic Smiles]

Thanks for the responses Janet and Corina.

For people who take it twice a day, how far apart do you space your doses?

[corina]

Jackie, I take 120mg 3 times per day, about every 4 hours. For me, I feel that it lasts for that amount of time.

[galatea]

I started taking it 3 weeks ago, and have been on 60mg three times a day for the last week. It’s been absolutely amazing for me. My main problem is fatigue, especially mental fatigue, and for the first time in 3 years I’ve been able to read properly. Before I was on it, I couldn’t even concentrate on a page, now I’m reading several hours a day (with constant breaks every 15 mins/ 1/2 hr). So far no side effects.

However, it's been no help with tachycardia, blood pooling or blood pressure.

[Lethargic Smiles]

Thanks for the responses.

I'm in the beginning stages so I am at 30 mg times twice a day and we will increase weekly from here. Day one has brought no side effects at all which is a relief after my bad experience trying Clonidine. My resting blood pressure today is 95-105/65-70 and standing is 115/84, so it is doing what it should with my blood pressure. My resting pulse was 81. I took it after walking to the bathroom and back to my chair, and it was 106. So not as high as usual but I also didn't stand in one spot prior to taking it. Still, a good sign. Energy is about the same as is focus.

I take Midodrine and Propanolol, but dose based onhow I feel and my stats. I usually take 5-7.5 mg of Midodrine twice a day, but I've only taken 2.5 mg this morning and 5mg this afternoon. I took half the usual beta blocker this morning and the full amount in the afternoon (Propanolol: typical dose 10mg 2-3x daily). I hope I can get off Propanolol, I hate the fatigue it gives me!

[Psalm 23]

I take 60mg of Mestinon three times a days. I take it at 5 hour intervals because I don't want to take the third dose too early. I take it at 6am, 11am and 4pm. It mostly helps restrain my tachycardia and controls my thermoregulation issues to a degree. In the beginning it did help improve fatigue but not anymore. It doesn't seem to have much of an effect on my blood pressure which is very labile with or without medication. It's interesting the way each of us benefits so differently from taking Mestinon. I am beginning to wonder if the effectiveness wears off over time though and a dosage increase becomes necessary.