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A word of caution about caffeine/nightshades
I mentioned in my earlier post that caffeine is a cholinesterase inhibitor just like Mestinon is. I thought I better add a caution about that.
Mestinon inhibits acetylcholinesterase, an enzyme whose job it is to "mop up" acetylcholine. So what Mestinon does is give us more acetylcholine for a longer period of time. Caffeine does the same thing, as do the nightshades (potato, tomato, peppers, eggplant). The problem is that if you drink beverages that have caffeine, or eat chocolate, you don't really know how that will affect you! It's not "regulated" like Mestinon. And there's no way to know what eating a potato will do. It's not like anyone can say that a soda has a 30 mg. equivalent of Mestinon or that a potato has a 60 mg. equivalent of Mestinon! :cool: That's why the nightshades are relatively contraindicated in MG. I've never read about caffeine in relation to MG in any MG website though, unfortunately. So be careful when you have caffeine or nightshades. Too much acetylcholine isn't good either. You don't want to have a cholinergic crisis. There's no way to know what affect those foods will have on your MG! When in doubt, talk to your neurologist. Hopefully, they will know about all this. Annie I thought I should add that caffeine also increases dopamine, which is why it makes you more mentally alert and "feel good." |
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Love your researching - I do the same whenever up to it, cuz these doctors don't know all these little subtle food things, do they. Becky |
Thanks, Curious.
Becky, I stumbled upon this stuff by accident. I had started eating chocolate and having the occasional cola due to doctor stress. When I stopped cold turkey, I noticed I was weaker. That's when I started to dig around. I didn't think the sugar was helping, so I figured it had to be the caffeine. Thanks to Google, I just put in "caffeine acetylcholine" and hit the jackpot. Here are a couple sites that explain the connection. The first is about nightshades and the second about caffeine and lung function. http://www.organicfoodee.com/inspira...ghtshadefoods/ http://jap.physiology.org/cgi/conten...ract/60/6/2040 That's interesting about your EMG's. I have no idea if it can have the same effect Mestinon does on EMG's. I do know that several sites about EMG's say you shouldn't have caffeine for about 3 hours before the test. Doctors should do a study about this!!! I mean, what if caffeine does make it look like we don't have MG when we do? Annie |
That is wild!
That is wild! When I was super weak, I would crave chocolate - in fact I have a drawer beside my bed that is full of it and would wake up in the middle of the night to eat a piece if candy - when I was able to swallow - around 4:00 am........Haven't had any sodas or coffee in almost a year, but I do drink sweet tea all day.........you think that was my body's way of trying to get more energy?
The one thing I have noticed @ Cancer Care Centers of SA is that when the patients are undergoing chemo they have have strange cravings like mine - fried egg sandwiches, oj with lots of pulp, whole milk and the like...........I guess our bodies just know what we need.......... You would think that the drs would care enough to TELL their patients that caffiene/nightshades effect their testing....this darn disease is hard enough to diagnose without other stuff getting in the way........I just do not understand!:( It is soooooooo frustrating! I hope everyone is doing well today! Big hugs! Erin:D |
some further information:
I found this post yesterday, and thought I would do some research on it.
Let me start with Mestinon. This drug has been around for about 40 years. When it came out, back then, research was not what it is today. For example. Pyridostigmine has been used in NORMAL humans to try and block the actions of poison gases during war. Quote:
What this means is that normal mice (those without a lack of acetylcholine), suffered lethal results when given both pyridostigmine and drugs I bolded in the abstract. Tests were not done on humans, obviously, and I think this is hard to extrapolate to MG patients. So don't become alarmed yet about the word "lethal" as used here. This is a pretty good article about MG as we know it today. http://74.125.47.132/search?q=cache:...nk&cd=10&gl=us This is a 2005 CE about MG and its treatment. The mention of caffeine about 1/2 way down the lesson: Quote:
I find this an interesting subject, as I have found that potatoes set off my arthritis and PN symptoms. So I have been avoiding them for over a year. A reintroduction of a modest serving will give me symptoms again. I found some interesting articles on this: Quote:
So what do these studies show? That under certain conditions the alkaloids in potatoes may exert an increased recovery time to normal people who have been given a mivacurium-induced paralysis (during a medical procedure). Would this be additive to a drug like Mestinon? That is really hard to say. In the 40 years Mestinon has been around (granted not used heavily due to the uncommon incidence of MG), but still we would have some anecdotal reports at PubMed on using it with certain foods or coffee tea. I could not find any warnings in the professional literature on food intake with Mestinon. None of the drug checkers have an interaction posted with caffeine. The nightshade vegetables have very reduced levels of alkaloids (mostly solanine) in the fruit/tubers. The majority of the alkaloids reside in the green leafy structures which we do not eat. Potatoes do have that green tint in the skin, which many know can cause GI upset when eaten, whether one has MG or not. So certainly you can ask your neurologist about this connection with foods/coffee and the use of Mestinon. I wouldn't worry however about chocolate at this time. ;) |
This is another example of one branch of medicine not knowing what another is up to. Just because there aren't articles about caffeine specifically in relation to MG (although there are many about caffeine and it's effect on muscarinic and nicotinic systems), it does not mean that caffeine is benign. Or nightshades. Or if you have both of them, while smoking and being exposed to organophosphates (which could make MG much worse, as in paralyzing the breathing muscles).
If you are an MG patient and have maxed out Mestinon, you can't be too careful about caffeine or nightshades. No offense, Mrs. D., but you've never had an MG or cholinergic crisis. The balance between not enough acetylcholine and too much in MG is a tough one and sometimes it's hard to tell which it is. It can be a delicate balance, especially when an MGer is not doing well. Just one little thing being "off" can send them into a crisis. All the articles and research in the world won't disuade my instincts about it. The fact is that there is not enough information out there on caffeine and MG. Period. Why? Because no one is doing the cross-research that should be done. Or the EMG studies necessary. In the meantime, I plan on being cautious about the intake of these foods and drinks. Also, both coffee and nightshades contain a good amount of potassium in them, which should also be taken in with caution in MG (too much, or too little, can make you weaker). There is an entire list of medications which are contraindicated in MG (relatively) but the only foods that have been so far are the nightshades. It's kind of, but not really, funny how foods are so easily dismissed as benign. What do you think they make the drugs out of in the first place? :rolleyes: Celery is a natural diuretic, for example. Someone on lasix (a diuretic) maybe shouldn't have celery, celery seed or celery salt but I bet there aren't lots of studies on that! http://www.umm.edu/altmed/articles/c...eed-000231.htm I have spoken to a well-known neurologist about this and he was quite interested. And this is someone very well-read. He did not dismiss this information. On the contrary, he plans to look into it more. The fact is that not all information is cross-referenced between medical fields or even in the same field. For example, did you know that achlorhydria (no stomach acid) is considered a risk for colon cancer? No one ever talks about this but it's a fact. I haven't had stomach acid for years and that runs in my family, as does adenocarcinoma of the GI tract. These are both gastroenterology issues but not too many gastroenterologists know about achlorhydria and its effects on the body. They just throw acid blockers at anyone with indigestion instead of recommending they take Betaine HCL (mild acid) to help digest their food. I'm not angry - just being passionate. I hate that some things are not told to patients (so they can make their own decisions WITH their doctors) and that some things in medicine are not fully delineated in science to the benefit of patients. I wouldn't dare be arrogant and poo-poo this kind of information, especially because I've had a crisis. I know firsthand that a "little" thing like heat or stress or infection or caffeine can make the difference between oxygen or a bi-pap or intubation and how long each of those things go on. And that's why I felt it was necessary to bring this up. Just my two anecdotal cents. ;) Very good information, Mrs. D, as usual. Thanks for sharing it. Annie EMG's and caffeine http://www.myositis.org/template/page.cfm?id=322 http://www.healthlinkbc.ca/kbase/top...2/how2prep.htm |
Erin, When I had a severe B12 deficiency, I craved anything with caffeine. That's interesting that you crave things when you are worse.
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Things are always changing in medicine.
But here is a doctor's advice on diet and MG, for those interested in this subject. http://www.netwellness.org/healthtopics/gravis/box9.cfm |
Isn't that the truth, Mrs. D.
I think I should say a nice word about neurologists. I know it's out of character but maybe just this one time. Once they finish school and go into practice, not a lot of them do research. Some do but a lot don't. So, if they're not taught something in school, they might not know about it. How can they tell us about not having caffeine before an EMG if they don't know about it? So I think it might be up to us to do some of the informing! ;) |
Annie... I understand completely.
The caffeine issue is in one of the quotes I put up above... Caffeine gives twitches instead of other signals. These may cloud the issue during EMG. It is a fine point. But it also begs the question as to why people are allowed muscle relaxants during EMGS...like Valium. Doesn't this cloud the EMG results too? What this does is reduce tremors as well, IMO. I personally don't think caffeine in large amounts is good for anyone. Myself included. But a bit of chocolate daily, or one cup of coffee or tea, can't surely be so negative. When your doctor gives you the information you asked for, please do post it here. |
You ladies ROCK!!!
:winner_first_h4h: This is some awesome stuff! Annie and Mrs. D., I for one soooo appreciate the time each of you has devoted to help us all educate ourselves on these issues. I agree that there is so much info. out there in the net that we can't completely blame our neuros for not giving us all the information. And unfortunately, the medical community is just now starting to come around to realizing there's more to disease than what drugs and tests are out there.
It's just hard to find one that is that "educated". I am going to post in a new thread another caution I just found out about Chantix (quit smoking aid). I'm not doing well enough to do it twice, so see the thread. I see my new neuro Tues. and she lists MG as one of her specialites - unheard of in my experience - and she is somewhat involved in research through the MDA org. here in Denver. Can't wait to see what she knows!!! Thanks again. The emotional support and opportunity to commiserate and compare notes is very important, but with lots of us research and relaying this type information we can all be a lot more proactive in our treatments! Becky Quote:
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Annie,
I just looked at the links re: nightshade and caffeine. This would appear to explain my only two vices in life and my strong addiction to them! Before coffee as an adult I had a pepsi every morning - couldn't do without it. And I started smoking when I was 13 "took to it" with the very first smoke - with no negative reaction at all. I guess I was self medicating myself without even knowing it, huh? |
Becky, That's very sweet of you, thank you. I hope your appt. next week goes really well. MG can be hard to pin down. I wonder why they don't do exercise EMG's more often since so many of us can be clinically "ok" when at rest.
Ever since my B12 deficiency in 1997 - 99, and having not one doctor be able to figure it out, I have been hooked on doing research. I was going to be a biochemist after high school but went into the arts instead. Can't get that science bug out of my head! ;) It's entirely possible that you were craving that boost from smoking/foods. I drank coffee since I was 17 but then stopped when I couldn't work anymore. Don't think I'll ever give it up again. I'll respond to your smoking issue on the other post. Mrs. D is a medical professional and has much better access to articles than most people. So it's a great asset to have her on this forum. Annie |
Bumping this up for Susan. Here's your info on caffeine, etc.
Annie |
This is a brilliant thread, thank you both for sharing this information.
When I get bad I crave chocolate. At the moment its Cadburys Turkish Delight - no advertising intended! But I don't know if anyone outside the UK would of heard of it! I have one bar a day at present, where normally I can go a few weeks without chocolate. I also get a thing for diet coke! Im a tea drinker, how very british of me, but I find Im drinking more and more of the stuff! May try limiting it just to see how I get on. Thanks again Rach |
A question for you wonderful educated people... my husband recently bought a "Men's Health" magazine and I was having a flip through when I came across a blurb about something called Toothed Clubmoss. The magazine says that this plant has an active ingredient called "huperzine A" which "inhibits production of an enzyme that in turn reduces the amount of an importnant chemical of the central nervous system called acetylcholine." Just wondering if anyone has ever heard of this or if anyone has used it to help their mg. The article was in reference to alzheimer's disease - not MG. Apparently huperzine A is available as a supplement. Anyhoo, i was just wondering about your two-cents.
Thanks, and take care! ~Kathy PS Sorry, maybe in retrospect I should have started a new thread. Hope everyone is well |
Kathy, What you posted is very relevant to this conversation! ;)
It does the same thing Mestinon does too. They are currently researching what possible role it can have in a variety of conditions. I didn't mention it because it hasn't been used widely and is not in a "drug" form yet that is regulated. So it inhibits acetylcholinesterase (enzyme) that actually INCREASES acetylcholine. Well, it doesn't actually increase acetylcholine - it just keeps the enzyme from eating it up so more of it stays around the NMJ. Thanks, Kathy!!! http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum http://www.webmd.com/vitamins-supple...INE+A&source=2 |
Mrs. D and Annie,
I was fascinated by your research and info. While this is anecdotal info for sure, I am (and have been for years) a coffee addict. Chocolate too - - but I can make it through a day without chocolate. Not coffee. I routinely drink 8 - 10 mugs a day. Done this for 30 years or more. Since beginnng Mestinon is early June, I'm not nearly as interested in coffee. Find myself down to two or three mugs now. And never thought a thing about it until reading your posts. Coincidence?....or a 'smart' body. No idea - - I'm just sharing the facts!! lol Sue |
One has to remember people vary.
My hubby is a coffee/chocoholic and does not have MG. But he does have ADD and I believe both of these help him with focus and concentration. Later in the day he drinks decaf. Caffeine is used for other neuro conditions. http://emedicine.medscape.com/article/1182710-overview I can't tolerate coffee at all. It upsets my stomach severely. I have one large mug of Breakfast type tea by Bigelow daily. And one or two green teas perhaps in the day. Otherwise it is peppermint tea for me. Too much caffeine makes my blood pressure go up and makes me very tense and emotionally reactive. I just can't handle stimulants much. |
fascinating. since starting mestinon i've cut down my morning coffee to 1-2 cups rather than my former 12 cup mr coffee pot. pepsi and mountain dew will propbably need adjustment also.
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Read this article:
http://www.lef.org/protocols/neurolo..._gravis_01.htm In the nutritional support section I read about it. I saved the article for future reference. Quote:
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Thanks Desertflower! That article was great - nice to have so much info in one spot. I bookmarked it for later use.
I've been self-medicating with coffee lately. My neuro is trying to get me to reduce my steroids but I'm stuck at 40 mg alternate days. At that dose I am fairly "normal" and able to cope with the things life throws at me usually, but my non-steroid days I ALWAYS feel weaker, hence an increase in caffene those days. I make sure I begin non-steroid days with a coffee and usually have a few more throughout the day while teaching. I was always a tea drinker but now alternate between the two. Hope you are all well! ~Kathy |
Hey Desert-flower
:)Thanks for that link--it was really informative, and welcome! I never welcomed you in your introduction thread...I hope that you can find some good info. on the site...I know that I have!
Nicky:hug: |
MH, I have to believe that everyone's stories about caffeine intake and MG are more than anecdotal. It seems like everyone has some experience with it either making them better or worse. I do a similar thing. When I have that cup of coffee in the afternoon, which I refuse to give up, I back off on Mestinon.
Mrs. D. is right, we are all different. That is why I often caution about trying anything, whether it's a food or supplement. Only try one thing at a time just in case you have some kind of adverse reaction or side effect. Since we all have immune "issues," pampering that immune system probably is the best thing any of us could do (like lots of sleep, laughing, etc.). :cool: Kathy, I'm still afraid that doing that every other day thing with Pred is putting you into a little mini-adrenal crisis every other day! That is not good for the body. In fact, it can be dangerous. I think it's time for a conversation with your primary or neuro about that. Maybe a level dose is better for every single day. They usually only do the every other day when the every other day is zero mg. They do that in the beginning to try to keep the adrenals functioning. When you give your adrenals a "vacation" by going on Pred every day, they don't want to go back to work once you start reducing the dose! Annie |
Hi Annie,
Sorry - I don't think I was clear enough earlier. I take 40mg pred one day and none the next (I think it was to try to keep my adrenal glands active, like you said). Plus I'm on 150 mg of azathioprine and Mestinon every 3 hours. You are right though - I really do need to go see my neuro - it's been a year and he was a brand new neuro then. Because I don't kick up a fuss and am in a fairly stable condition I don't think they remember I still need attention! I hate putting people out AND loathe asking for time off work so I procrastinate until I absolutely HAVE to go - hence my complete inability to walk, function, etc a year and a half ago! Anyways, thanks for your input. Kathy |
Interesting thread. I was formerly a serious coffee drinker, 20 espressos per day was not uncommon, I had my own espresso bar. But since closing the business I have stopped drinking coffee completely. Other peoples coffee doesn't taste good enough.
Then I got my first symptoms of MG. Coincidence? Or was I self medicating for years. I now have caffeine in 200mg pill form. It gives me a bit of a lift, and suggests to me that I do have MG, even though I do not yet have a diagnosis. |
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