Mestinon vs Caffeine
 

Since I am not yet diagnosed, I have no access to Mestinon. However I do know that Caffeine has helped me in the past.

So my question is, can anyone say what the Mestinon/Caffeine equivalence is. I see people reporting 60mg Mestinon 3-5 times per day.

Caffeine pills are 200mg. Can anyone say what that would equate to in Mestinon?

I just drink a lot of coffee. It really helps me.
Mike

The trouble with drinking coffee, is that you never know how much caffeine you are getting from one cup to the next. Different coffees, different brewing methodology etc etc. Even when you make it yourself it can vary from cup to cup.

And most people add sugar and milk.. absolutely not good for you, whether you have MG or not!

I used to drink extra coffee in the afternoons before I knew what was wrong. It eventually was not enough to pep me up. The problem with a lot of caffeine, for me anyway, is that it produces the jitters and can make the heart race, a very uncomfortable feeling for me.

Quite correct Limpy. It took me all day to drink enough espresso to get the jitters, but it does happen and some people are more sensitive than others.

I would be very cautious about caffeine pills. You can overdose and kill yourself with them. A good cup of coffee is a great thing though.

Due to my history in the industry, I cannot drink coffee anymore. I am used to Fresh roasted, quality coffee, and the rubbish that is served or sold just gives me a bad stomach.

Caffeine pills on the other hand are precise. The recommended max dosage is 5 x 200mg, and I do not intend to get back to that level, as I find that reducing the dosage causes me withdrawl symptoms. Still 1 or 2 a day gives me just enough energy to get to the shops and back.

This is an apples and oranges comparison in that caffeine will certainly give you an energy boost, but Mestinon is used to improve muscle strength and works by preventing the breakdown of acetylcholine in your body that is needed for normal muscle function.

Personally, I use both!

Caffeine works in the same way as Mestinon, so you should always be careful adding caffeine to your existing meds.

I gotta have my caffine in the morning... LEMS is high on my list of diagnosis, and I get IVIG for it.. Too much caffine can make me jittery, and therefore feel weaker (just like an adrenaline surge will make me oddly weak and unable to do much for 15 minutes).. but as long as I am smart about it then it makes me feel a ton better!

The acid in coffee and tea is hard on my stomach, even though I love them, so sometimes I substitute a caffeine tablet for a pick me up. I would rather be able to enjoy the beverages, though.

I agree limpy - my tummy doesn't like coffee much these days... I will still drink it most of the time and deal with the consequences... but it's probably not the most intelligent decision on my part :)

Be very cautious with caffeine. Yes caffeine does give a temporary boost. But caffeine affects all the nerve receptors not just those affected by MG. Mestinon is more specific to those receptors affected by MG.

You may have some very severe unwanted side effects from the caffeine.

kathie

Juliejayne, I'm sorry if my response is a bit blunt, but that's only because I care and believe we all need to be cautious in the realm of over-the-counter medicating.

First of all, treating something you don't know you have yet can be dangerous.

No, there is no way to equate Mestinon with caffeine (as a CI) from any other source. And it would be dangerous to even guess. Mestinon can be given at specific doses, with known side effects and adverse reactions.

Caffeine pills are more potent than drinking coffee. Too much coffee has adverse effects as well. Tea, too, especially for those with any clotting issues (mild as that effect may be).

There is no proven evidence which shows that caffeine in coffee, tea, or a pill is an effective CI for use in MG. There's plenty of anecdotal evidence, but do you want to rely on that for a disease that could kill you?!

Provigil/Modafinil is often used for those with chronic fatigue issues (as in sleepy tired and not fatigued muscles). Although studies have shown that the more natural caffeine found in tea or coffee is as effective. Provigil does not have any effect on MG (allegedly).

I could find no evidence that shows what exact source the companies who manufacture the caffeine pills use. What if it's multiple sources? What if strength varies between batches? Even drugs approved by the FDA have been shown to have efficacy issues.

A person's body can become used to a certain level of any drug, and need more of that drug to be effective. That's one of many reasons any long term use of those "uppers" and "downers" is not widely accepted by the medical community. They can have long-term effects on the body, such as the heart. Sleeping pills, for example, are not intended for long-term use, and there are many other, more natural, ways to have a good night's sleep.

Also, coffee does affect blood pressure, glucose levels, and can give you an even bigger "low" after having it. Caffeine pills do that, too.

Can't you buy a good, organic coffee and brew your own? They have single serving brewers that are great to use. I wouldn't trust the sourcing of any chain coffee store.

So, yeah, I'm a real downer on the topic of uppers. I do enjoy one cup of coffee a day, but that won't even help if my MG is bad. I've had days where I've had the coffee and my MG puts me to sleep anyway. Doesn't do a thing for muscle strength or wakefulness at that point. :cool:

Get diagnosed, get a good treatment plan, and then discuss caffeine intake with your primary doctor in the setting of your overall health. If you're going to self-medicate with caffeine, make sure you check in on your heart with an ECG periodically.

Annie

Annie,

Dont get me wrong, I agree with your warnings. And I appreciate your bluntness.

I have more knowledge, though anecdotal, of caffeine/coffee than anyone else you are likely to find.

Treating something that you don't know you have, is a danger. But waiting 5 years or so for the medical profession to agree a diagnosis could equally be dangerous. Caffeine in the form of coffee, tea or soft drinks, is widely used and overused.

No I don't want to rely on anecdotal evidence, yes I do want to get diagnosed. But what am I supposed to do in the meantime?

Yes caffeine does have other, less wanted effects, and should never be taken by anyone with elevated blood pressure, but that applies to caffeine in drinks too.

Taking a 200mg caffeine pill, is far better regulated than drinking several large cups of coffee. Coffee contains many other substances and varies terribly in strength. I am very much of the opinion that thousands of MG cases are not recognised because they are "in effect" self medicating, without even realising that they have a problem.

Since I react to something else in "old" coffee I cannot drink coffee anymore unless I can roast it myself. 3 weeks after roasting the coffee is old and changed. 95% of what you can buy is already too old to drink. IMO.

The caffeine pills that I have are produced by Allmax in Canada, and yes I have no idea if they are following the rules, but the same would also apply to the B12 supplements etc, etc.

Julie

Drinking a good cup of coffee has the benefit of cheering me up. I try to keep it to two (large) cups a day. I have had doctors say coffee is bad and others say that it is good. I drink it because I like it and there are some things that are just worth doing.

If it cheers you up, it is worthwhile. Just don't overdo it, and try to drink the freshest roasted coffee that you can find. It tastes better and does more good.

Aptly put, Celeste, as usual.

While one might not know every single ingredient in, for example, a B12 tablet, the difference is that there is a test to verify whether or not it is doing what it should. Then, at that point, use is no longer anecdotal.

There is no such test for whether or not caffeine is helping MG, unless you have obvious ptosis that is worse before you have it and better after you use it. Although that is still not considered to be more than anecdotal by doctors.

And if you have weakness from polymyositis, for instance, caffeine will do nothing for that disease. And if you have one of the CMSs in which there is too much acetylcholine, caffeine will only make you worse. Again, how can you know what you truly have?

The larger question, and problem, here, Juliejayne, is why you aren't receiving help from doctors and what can we do to help you so that you can?

Annie

Annie,

You are so right... why are the doctors not providing help? Well I am sure that they would say that they are still investigating. But at this point their conclusion is that I have a psychiatric problem. Described as Burn out.

I happen to disagree. But the more I insist that something is wrong, the more they are convinced that I am "malingering". Or so it seems.

If they don't know what is wrong with us, they assume it is psychiatric. Then they can refer us out and get rid of us. Saves them a lot of trouble.

I gathered that... so how does one get past that.

My fear is that I will end up on a years long course, of complaining to GPs. Not that that would be a problem, but in the meantime my general health is getting worse. I have already put on 5 kilos since this started, because I can't exercise, anymore.

OK, it is some time since I posted in this thread. 5 months on I still do not have a confirmed diagnosis. However I have been able to get my GP to prescribe Mestinon on a trial basis. The effect is dramatic.

But this thread is Mestinon vs Caffeine. Whilst these are subjective, and personal results I can know give some answers.

200mg caffeine tablet, claimed to be equivalent to 1 large strong cup of coffee.
CI effect is about the same as 5mg Mestinon.

I am now on 30mg Mestinon every 4 hours. To reach that level of effect with caffeine alone I would have been taking more than the reccommended daily dose, every 4 hours. Clearly that would have caused serious side effects.

But at least we now know... 200mg caffeine is approx equivalent in CI effect to 5mg Mestinon.

Mike,

I make a coffee drink with Almond Milk. I use a handful of Ghirardelli Classic White Chips, 12 ounces of Vanilla Almond Milk, and two table spoons of Nescafe Clasico Dark Roast instant coffee crystals. I blend in the Vitamix.

I usually poor into a glass and put the mixture in the freezer for 15 or 20 minutes. You can also use more or less Ghirardelli chips to make it more or less sweet.

-Mark-

I just love the old fashioned cup of coffee.
Mike

No, JJ, we don't know!

You can't say that your experiment will work with all MGers. We are all "variable" given how MG is. To measure a constant against a variable doesn't work.

http://www.apelslice.com/books/97806...id4636650.html

You have to take into consideration all constants and variables (i.e., varying strengths of coffee). Even then, you'd have to involve a large group of MGers to test that theory.

I'm glad Mestinon is working for you.

I like my coffee organic, black, and hot. Simple and yummy.

Annie

I love coffee and I drink it every day. It does seem to help me feel better.

The issue with using it instead of mestinon for me is that caffeine crosses the blood/brain barrier whereas mestinon does not to any appreciable degree. If I try to drink coffee late at night, I won't sleep at all. Mestinon helps me breathe during my sleep.

A smattering of articles on what caffeine does.

http://www.ncbi.nlm.nih.gov/pubmed/20164568

http://worldofcaffeine.com/caffeine-...otransmitters/

http://www.ncbi.nlm.nih.gov/pubmed/7154859

http://www.news-medical.net/health/C...rmacology.aspx

And an article on why they are still arguing over whether Mestinon crosses the BBB (particularly the hypothalamus). But, of course, we aren't mice.

http://www.jmedcbr.org/issue_0601/Cool/Cool_10_08.html

Lots of variables can probably effect both.

Annie

Hi Annie,

I did state; Though perhaps I should have been clearer about that.

Having made that proviso, I still think that my subjective and personal results are interesting. I would welcome other people testing this, BUT, there are very few people who would be in a situation where such a test was possible or advisable.

What is also, I think, interesting is that, I am now on 30mg Mestinon every 4 hours... that works fine. By my estimation to have a similar effect purely with caffeine, would require 1200mg. That would be in one dose a daily overdose. Repeating that would cause serious side effects, possibly fatal.

It also suggests that the effect of a cup of coffee is relatively small, and should not have a vast effect on MGers.