I often use zip fizz, have even mixed it with coffee instead of water and then sipped it all afternoon or morning. There was a time I even crushed mestinon into the potion.( I have a high tolerance for bitter flavors). The plane Zipp Fizz is a great help, add the caffeine and you don't necessarily want to be around me.

Weathergrl,

I am glad you brought this up because I have learned a lot. Especially why I MUST HAVE MY MORNING COFFEE! Why I crave tea and coffee. Was really thinking it was a will power thing (and it is). But now I realize there may be something else in there too.

Apparently cholinergic crisis (excess doses of a cholinesterase inhibitor) can be a concern. I think the majority of us could not tell you what the magic number is for caffeine mg to body weight ratio and combine that with the unknown amount of Mestinon in someone's body at a given time (because the dose comes on and wears off at different times) this could have a chance to be deadly. Below is a quick article on Myasthenic Crisis and Cholinergic Crisis. I think lower doses like coffee or tea may be fine for some of us. However, trying to figure that out with pills could be bad and what may fine one day could be dangerous the next.
http://www.ncbi.nlm.nih.gov/pubmed/16096606

Not sure if this is good or bad. This article from the MGFA says caffeine speeds up how quickly the Mestinon takes affect. It also says that if you have digestive issues with Mestinon that caffeine could make it worse. (Which I am sure I did experience as my dose was increased.)
http://www.myasthenia.org/LinkClick.aspx?fileticket=SaScYKXrtLw%3D&

Just an FYI, I asked my neuro about taking a final dose for the evening if the dose time came within an hour or so of bed. His answer was skip it. And quite often if I think I will be going to bed within an hour or so of my final dose then I skip it. I have been trying to reduce weight and therefore trying to avoid candy and too much soft drink etc. But my cravings have been going into overdrive at night right before bed. I thought maybe is was from not having those things all day. Now I am thinking that there might be another reason on top of that.

Kimber

Kimber,
I also asked my neuro about taking my last dose of Mestinon at bedtime. I feared that since it enables me to do so much during the day, it would 'energize' me at night and prevent good sleep. He said it wont and go ahead and take it. He was right. It does not prevent me from sleeping.

I have a couple months to go before I see him again, and I think I might expierement with caffiene. Mestinon (luckily for me) does not give me any gastric upset. Maybe if I alternate mestion and caffiene, I could have a more 'even' kind of day. Thanks alot for your imput!

I just drink the coffee. Lots of it. I used to wonder why I was so caffeine dependent compared to others long before I was diagnosed.

Elinora,
When I had to do anything more than the minimum I was living off of the sugar free energy drinks like Monster. I knew they probably weren't good for me but I was just trying to survive. When I got diagnosed and got Mestinon I quit cold turkey. I haven't had one in probably a year and a half. I was worried about how the other ingredients might react with the meds.

So I guess that brings me to question how many of us use the over the counter energy drinks? Has anyone had problems with any of them?

I cannot function well without my morning cup of coffee. I enjoy coffee in the morning and tea is a pick me up at noon. I also like adding in chocolate powders that do not have sugars added so I guess that is like an extra shot of caffeine.

I am really sensitive to carbs so I don't drink cokes due to the high sugar content and I don't do well with sugar substitutes either so have don't use diet drinks. I have been losing weight purposefully and do have sugar cravings that I have learned to satisfy with a home made concoction.

I have concocted a fairly sinless drink that seems to be wonderfully caffeinated without much sugar. It is especially wonderful in summer when it is too hot. I blend two cups of ice with some chocolate powder that does not have sugar added and also put in some coffee plus 1/4 cup of 2% milk....Once blended this goes into a very tall glass and has the thickness of a milk shake.

Then the magic happens...Take two tablespoons of cool whip and swirl it through the entire glassful. This renders the chocolate less bitter...adds a creaminess...The milk has 35 calories...the chocolate only 10 and the cool whip 50 so as I say sinless....only 95 calories for a very tall cool glass of heaven....:)

I have also made a Welch's grape drink with grape juice and ice with the cool whip swirled through. It is so refreshing on a hot day.

You are correct about caffeine...

Too much causes anxiety for me though. Studies show that is the case as well. I have also seen that a little caffeine can help with anxiety. So, if we are drinking a lot of caffeine, please be careful.

I have never tried a RedBull or Monster drink or the like. I have found Fruit Punch Sobe (the only one they make with caffeine in it) helps me out, as does iced and regular tea. When I drink the Sobe, I only drink half of it a day though, because it has a lot of sugar also.

I think caffeine is a good thing for people with MG, but my opinion is that we need to tread carefully as to our intake. See how it goes. I don't see anything in the article posted by Kimber about caffeine speeding up mestinon, but it does mention digestive, which if is a concern to anyone, they should look up caffeine and its side effects on the body.

Be well,
TJ

Another obvious issue is that, if you are taking a steroid, caffeine will be another contributor to insomnia. It has helped my milder MG in the past, however, and my asthma, so it's something that will remain on my "can have" list, which has grown too short, in my opinion. If coffee and chocolate were not on the list, I'd be really, really sad.

Best way to take caffeine ?
Snort, shoot, toke, pop or huff --all are pretty effective ;-)

Ok, I confess. After being caffeine free for 20+ years, I have found wonderful relief with a cup of coffee. I'm only at one per day in the afternoon . I think it's the equivalent of 30 MG of Mestinon for me. I've always loved coffee, so now I'm guilt free :).

Found this list of caffeine from the Mayo Clinic and I have to say. I feel kind of silly! All these years I thought decaffeinated meant NO caffeine not LOW caffeine! Generic coffee can have more kick than McDonald's or Starbucks (but not Pikes Place)! And most green teas are listed as decaffeinated but check out the real amounts if not processed. We all knew about Mt. Dew but who knew about Diet Coke?
I had no idea that Starbucks Pikes Place could beat out some of the top leading energy drinks, beat some of the caffeine pills and would barely come in under chocolate coated coffee beans!

This obviously doesn't compare all of the products on the market but it definitely was an eye opener for me!!!

http://www.mayoclinic.com/health/caffeine/AN01211

Type of COFFEE Size* Caffeine**
Espresso, restaurant-style 1 oz. (30 mL) 40-75 mg
Espresso, restaurant-style, decaffeinated 1 oz. (30 mL) 0-15 mg
Generic brewed 8 oz. (240 mL) 95-200 mg
Generic brewed, decaffeinated 8 oz. (240 mL) 2-12 mg
Generic instant 8 oz. (240 mL) 27-173 mg
Generic instant, decaffeinated 8 oz. (240 mL) 2-12 mg
McDonald's brewed 16 oz. (480 mL) 100 mg
McDonald's Mocha Frappe 16 oz. (480 mL) 125 mg
Starbucks Latte 16 oz. (480 mL) 150 mg
Starbucks Pike Place brewed 16 oz. (480 mL) 330 mg
Starbucks Pike Place brewed, decaffeinated 16 oz. (480 mL) 25 mg

Type of TEA Size* Caffeine**
Brewed tea
Black tea 8 oz. (240 mL) 14-61 mg
Black tea, decaffeinated 8 oz. (240 mL) 0-12 mg
Green tea 8 oz. (240 mL) 24-40 mg
Iced tea
AriZona Iced Tea, lemon-flavored 8 oz. (240 mL) 11 mg
Generic instant, unsweetened 8 oz. (240 mL) 26 mg

SOFT DRINK Size* Caffeine**
7UP 12 oz. (355 mL) 0 mg
A & W Root Beer 12 oz. (355 mL) 0 mg
Barq's Root Beer 12 oz. (355 mL) 18 mg
Coca-Cola Classic 12 oz. (355 mL) 30-35 mg
Coca-Cola Zero 12 oz. (355 mL) 35 mg
Diet Coke 12 oz. (355 mL) 38-47 mg
Diet Pepsi 12 oz. (355 mL) 27-37 mg
Dr Pepper 12 oz. (355 mL) 36 mg
Mountain Dew 12 oz. (355 mL) 46-55 mg
Pepsi 12 oz. (355 mL) 32-39 mg
Sprite 12 oz. (355 mL) 0 mg

ENERGY DRINK Size* Caffeine**
5-Hour Energy 2 oz. (60 mL) 207 mg
AMP, regular or sugar-free 8 oz. (240 mL) 72-74 mg
Cran-Energy 8 oz. (240 mL) 70 mg
Full Throttle 8 oz. (240 mL) 70-72 mg
Monster 8 oz. (240 mL) 80 mg
Red Bull 8.4 oz (250 mL) 76-80 mg
Rockstar, regular or sugar-free 8 oz. (240 mL) 79-80 mg
Vault, regular or sugar-free 8 oz. (240 mL) 47 mg

Type of product Size Caffeine*
SWEETS
Chocolate chips, semisweet 1 cup 104 mg
Dark chocolate-coated coffee beans 28 pieces 336 mg
Foosh Energy Mints 1 mint 100 mg
Hershey's Kisses 9 pieces 9 mg

MEDICATIONS
Excedrin, Extra Strength 2 tablets 130 mg
NoDoz, Maximum Strength 1 tablet 200 mg

One of the problems with caffeine is tolerance. That is you may have to take more and more to have the same effect or any effect at all (drinking to feel "normal"). That is primarily for "energy and alertness." I think many of us were self medicating with chocolate and caffeine before diagnosis. I got into trouble with coffee due to hiatal hernia, since it relaxes the sphincter and allows reflux. (Caffeine can be found in many products, including soap.)

I like the very dark chocolate and have used it as a between Mestinon boost and I drink hot tea in the morning. When I am not doing well, I am aware that my intake increases (and my desire for coffee) and I suppose that should be considered a warning sign, not an indication that I "need" more of these drugs as they will not replace more conventional treatment of the MG and have their own risks including increasing the risk of gastric and esophageal ulceration with prednisone. b.

B,
You are so right. I was aware that I was self-medicating with energy drinks prior to diagnosis which is why I stopped cold turkey. I was in survival mode. They weren't revving me up. They were just keeping me going. One of the things that I continually get from this site is signs I didn't know were signs. All the little signs and symptoms we pushed aside, ignored or just plain forgot. Those let me know a little more about just how long all of this has been happening. I think a lot of us can retrace our steps and realize either what we didn't realize what was a sign or see how hard it was to put the pieces together.
Now, things like this are letting me know about signs to look for now that I know that I have MG. I could not get over the late night cravings for soft drink or chocolate. It wasn't chips or other candy. I just thought it was a dieting "I can't have that" frame of mind that made me want it at that time. Didn't even notice it reading the post until someone said "I crave...". That's when the light bulb went off.
I definitely want to keep up with things like this that might help me prep for the ups and downs.

Ok so I feel kindof silly but I feel like I missed something.... what's the deal with caffeine and our affliction?