Mestinon & Blood Sugar
 

I have a question.

Does anyone know if Mestinon effects blood sugar levels?

I have a list of symptoms that occurs mostly after I take Mestinon, but it seems to be becoming more and more common, especially if I take Mestinon with a large amount of food

The most common thing is that my heart rate increases as well as my breathing and I feel nervous. After meals sometimes I get shaky. How bad these symptoms get are directly related to how much Mestinon I take. This has been happening for a long time now, right after I started to take Mestinon, but it seems to be getting worse recently. I am getting stressed for no reason, and my hunger is not functioning correctly...sometimes I won't get hungry all day and others I feel like I am starving and can't get enough food and I get all sorts of odd cravings. Occasionally I feel light headed, as if I am going to faint.

I can feel my body out of balance....and if I reduce the Mestinon to the lowest amount I can go to these symptoms are tolerable...and so I am recently suffering more weakness because it is preferable to these scary symptoms. I can't take them anymore, they are starting to make me feel crazy as well, as if my mind is thinking too fast for me to understand what I am thinking.

I am wondering if I am developing hyperglycemia or diabetes or something along those lines...but I am also worried that the Mestinon is the cause. I'm pretty sure it is.

I've talked to my neurologist about this on numerous occasions and he says it has nothing to do with the Mestinon. He doesn't seem to be concerned about these symptoms and focuses on things like double vision and strength, the MG symptoms.

It seems I am going to have to take a trip to my regular doctor, but first I wanted to know if anyone else has this effect. I'm trying to figure out how to explain why I want to go to the doctor. What should I ask them to test for if anything? How do I explain these strange symptoms? I have had so many bad experiences with doctors that for my own sanity I need to have something in mind before I can make an appointment. Should I request my blood sugar levels tested? Blood pressure? cholesteral? Or let the doctor decide?

Sorry for all the questions...the main thing is that I am wondering if anyone notices similar effects from taking Mestinon, or if anyone has blood sugar related problems as well as MG...

Thank you for listening.

I can't help as I already was diagnosed with diabetes and I'm on insulin. With the infusions I am getting my sugars are out of control because of the solu-medrol with the IVIG.

If I were you I would definately ask for a blood test of my glucose levels and you may need to be fasting for this. Your regular PCP could check this out for you.

Medicine is so specialized that you need a bunch of specialists to sort it all out as they only want to treat or test you for what is in their field. Your PCP acts as the gatekeeper and should find any other problems that you might have. Lots of luck.

Gabriella
:grouphug:

My first rule of thumb is that any medication can cause anything.

I have seen the most obscure and unusual adverse reactions to commonly used medications. This is not surprising if you think that one small mutation in one protein can lead to a host of changes in the entire organism. Pharmacological agents never work on one system. All we know from large scale studies is that in the vast majority of the population this medication has a significant beneficial effect, without significant unwanted reactions. But, this does not mean that it will be so in the entire population. A mutation in one protein, that would have no effect in life, can lead to significant and unexpected changes once a pharmacological agent is added (and there are numerous known examples for that, and probably numerous more that have not yet been described).

Practically, If you clearly see a relation between your symptoms and the mestinon your are taking (eg-dose-wise and time-wise) then even if it has never been described before, this is your response to this medication.

If those side effects are worse then the illness itself, then clearly it does not make sense to keep on taking this treatment. take into account that mestinon is no more and no less than symptomatic treatment, so if you have worse symptoms with it, than without it, why take it?

I stopped taking mestinon, because it made my illness much less stable. It sometimes worked like Popeye's spinach, sometimes did nothing, and sometimes made it much worse. As it is the most bothersome aspect of my illness is the extreme and unexpected fluctuations, so even though with mestinon I had times when I had a near-normal strength, it was not worth the price of other times in which I had to be in bed for a few days connected to my respirator.

none of my neurologists understood why this is so (or even tried to understand it). most of them just told me it is "impossible". I have possible explanations, but it doesn't really matter. we don't always know the cause of what is happening, yet we do know for sure that it is happening.
Many times in science and medicine, the explanations are found years after the first observation.

Interesting. I noticed the last two times I've had my blood work done before IVIG my blood sugar has been very low, once 44 and the next time 65, even though I was not fasting. It does make me wonder but I never related it to mestinon. A visit to the GP is in order.

Hi, DesertFlower, this is your local Graves disease patient reporting for duty. I know you associate these symptoms with Mestinon and meal times, but since 10% of people with MG also have Graves, you should have your thyroid checked anyway! In my experience, hyperthyroid symptoms fluctuate with blood sugar. Nervousness, shaking, and fast heart-rate could be hyperthyroid symptoms.

Once I was sure I had athlete's foot, so I used fungicide lotion, which didn't work at all. So I tried the powder, and that worked beautifully! So I concluded that the powder was better than the lotion, even though they had the same ingredients. Later I found out that what I had was not athlete's foot, but chilblains. And when I used the powder, I wore socks to contain it, which kept my toes warm. This is not to say that you're as much of a dunderhead as I am--just that cause-and-effect relationships can be surprising sometimes!

Abby

Insulin secretion as a response to glucose is a complex biological process.

Theoretically, increased levels of acetyl-choline could increase this response, in certain conditions.

See this for instance-

http://www.ncbi.nlm.nih.gov/pmc/arti...df/1001174.pdf

http://endo.endojournals.org/content.../1765.abstract

http://www.jbc.org/content/254/10/3921.full.pdf

This means that in most people it would not have this effect. But, it could become significant if there is also some underlying sub-clinical metabolic abnormality.

No, I've never had that kind of reaction.

I think it might be worth it to be evaluated by an endocrinologist. I love the neuroscience for kids site.

http://faculty.washington.edu/chudler/chnt1.html

This is interesting (look at the bottom). I can't find my favorite website! When I do, I'll post it.

http://ocw.mit.edu/ans7870/SP/SP.236.../drugchart.htm
http://www.brainexplorer.org/neurolo...smitters.shtml

The body is complex. I really think seeing an endo would be the most useful. Your primary doctor can run some basic tests, like a morning, fasting comprehensive metabolic panel. But an endo would have to do more complicated tests like catecholamines. If you have an imbalance of a hormone in your body, Mestinon might be just "highlighting" it.

Another thought would be that you are allergic to something in it but you don't mention any allergic type symptoms other than heart rate.

Suddenly, You need to get to your doctor right away for an endo referral. A low blood sugar is just as harmful as a high one. If you have essential hypoglycemia (low blood sugar), then you might have a small tumor or other endocrine problem. It could be reactive hypoglycemia. That's often where you eat too big of a meal or eat meals too high in carbohydrates without enough opposing proteins and the body goes from a high glucose and plummets down to a low one. Please ask to see an endocrinologist!

Ditto on what Abby said. I think Mestinon might just be bringing something else to your attention. Who knows. Just see a doctor, even if that isn't fun!

Annie

I don't believe foods work as medicine (although I had to try it after reading this), but for those who do and who have both problems:

http://jcsp.org.pk/index.php/jcsp/ar...ewFile/453/171

I love it but it's not for everyone.

Thank you all! Very helpful information.


Gabriella, you are right, it doesn't make sense asking my Neurologist about this, but I had to start there so he knows that I don't feel good if I take what he sees as average doses of Mestinon.

Alice, thanks for the confirmation. It is always best to trust ourselves and I do know Mestinon is causing something to go out of balance, even if it is more complicated that just the Mestinon. Higher doses of Mestinon seem to make me less stable similar to what you described but not quite as severe I think. At lower doses, just enough to keep the worst symptoms from effecting me, seems to work better, even though I am still weak, at least I don't have so many ups and downs. Thank you for the links, much of it makes sense, the Mestinon can effect our bodies in other ways...I do think Mestinon has thrown off my insulin balance or something related to it.

Suddenly, thanks for sharing your blood results. I haven't had my blood tested for a while now, and it is time. Make sure you get this checked out, as Annie said.

Abby, I have often wondered if I have thyroid problems and every time I look up the symptoms I decide that it doesn't fit me at all, but you never know. I will keep it in mind, it is possible.

Annie, those are great websites! Easy to understand. You did bring up an important point, allergies. I don't seem to be allergic to Mestinon, none of the usual symptoms, but maybe that is what this reaction is. I do have so many food allergies that I've been trying to work on, changing my diet. Maybe my change of diet is aggrivating the Mestinon effect somehow.

I was thinking that as I eliminate foods I am most allergic to, I am finding that my reaction to them when I do eat those foods is worse than ever. Doctors in the past have told me that since I don't have severe allergies that I should go ahead and eat these foods and that my body may get used to them, and my body has to some degree, my reaction has gotten less over the years. Maybe by eliminating foods I am allergic to, my body is coming to some sort of new chemical balance and that is what I am feeling, makes sense about the histamine effect (don't ask me to explain it, but it made sense when I was reading these websites posted by Annie and Allice, I need to read them again).

I think I'll go to the doctor, get some tests run just to make sure there is nothing serious wrong, and then wait this out, see if my body settles down as I eliminate foods I am allergic to.

As a side note, I've experienced days without itchy skin! I had gotten so used to itchy skin that I usually forget I am experiencing it...and to go so many years, almost 40 now, with itchy skin and to suddenly start eliminating the source of itchy skin, that must have some effect on body chemistry.

I do think there is something going on besides MG and a side effect from Mestinon...I think it is my allergies. Thanks for bringing up allergies Annie, I hadn't connected allergies with these symptoms, but now I am starting to see how all these symtoms are absolutely interrelated...allergies, MG, blood-sugar, insulin, acetylcholine, histamines...I am starting to see it....time to read those articles again, it takes a lot of mental work to put it all together.

Heat Intolerant, I think that is a great idea. I do believe in food-as-medicine, as long as one is cautious. I'm going to look into this food in more detail, and of course go get some blood tests to see if I even have blood-sugar problems first.

Thank you!

Desert Flower, are you taking any steroids?

I only ask because there is NO diabetes on either side of my family, for as far back as I can remember. Even though I am as big as a house, my sugar levels have ALWAYS been within a normal range (I'm 50).

That is, until I started on Steroids.

Even though I am only on 10mg/day, my blood sugar numbers went into the pre-diabetic range within a month of me starting on them. There is such a thing as "Steroid-induced Diabetes", according to my doctors.

Diabetes is an auto-immune disease, even though people will try to tell you it is associated with obesity. (Personally, I think that obesity is ALSO an auto-immune disease, but that's a whole other subject.....)

SID still has to be treated like any other diabetes - strictly limit the amount of carbohydrates that you consume (grains, especially), and MAKE SURE that you are eating plenty of good fats (real butter, cheese, cream, etc.) and proteins (fatty red meat, bacon, etc.).

There is a LOT of evidence out there that if we restrict our fat intake, our chance of developing diabetes increases significantly. There is a reason that schoolchildren have such high levels of diabetes and obesity; nobody's willing to admit that what they've been telling us all these years is DEAD (literally) wrong.....

Do you drink diet sodas or use artificial sweeteners? There was a study that came out in April, 2009 - that got NO press, by the way - that indicated a very strong correlation between using artificial sweeteners (just once a week) and development of Type II Diabetes (and none whatsoever between REAL sugar/HFCS and TIID). This study was done using data from the MESA study (Multi-Ethnic Study of Atherosclerosis), which has over 6000 participants from heart centers all across the country. It's not a fly-by-night study. And it wasn't set up to look at diabetes/sweetener correlations, so there was no "ulterior" motive in gathering this data. As a matter of fact, the people who did the study were SHOCKED to make the discovery that they did, and are going back to see "what they did wrong", because they are all quite convinced that what they found can't possibly be right.....(sheesh!)

P.S. That gluten-free diet can eliminate diabetes in some folks as well..... :p

(I'll see if I can find that sweetener article - I switched computers a few months ago, and still haven't recovered all of the stuff from the old one......)

Teresa,

Thank you for the info!

The only medication I take is Mestinon, and I've never taken steroids. It is a little odd that eating more fatty foods is helpful for diabetes, but at the same time it does make sense. I don't eat very much meat, mostly because it is so expensive to buy meat that doesn't have antibiotics or chemicals added. Maybe I should try eating more meat, it is one of the few things I have no allergy to. I do eat a lot of healthy oils such as olive oil and butter.

I don't drink soda at all, it gives me an immediate bladder or even kidney infection, don't know why but I avoid the stuff, even one swallow of it gives me pain.

And all those artificial sweeteners I avoid...every once in a while I do have a piece of gum but I've been trying to avoid that, too, because they aggrivate my MG symptoms.

I am going to go completely gluten free, I don't know why I keep doubting myself and trying gluten containing foods again. It is interesting to note that a gluten free diet can help diabetes.

The Mestinon is driving me crazy...my family is even starting to ask me if I recently took Mestinon if I do something odd. It makes me feel bad when they ask that question after I express an emotion, such as feeling sad or angry, as if my emotions are not real, but Mestinon induced. The Mestinon makes me really emotional, paranoid and even suspicious....when I can, I avoid people for a few hours afterward.

I am considering asking my Neurologist if I can lower my Mestinon dose even further. I have found that with diet changes I have gotten my symptoms more stable, and would like to see if I could go Mestinon free even if it means being weak. To be honest, these emotional problems are a bigger issue for me right now than the weakness. Of course, I don't want to be bedriddden again, that was no fun not being able to move at all...but I'd like to feel sane again, too. I wonder if it is possible for MG to get stable enough to stop taking Mestinon...

Thank you!

Well, that soda sucks calcium right out of the bones and leads to kidney stones. Kidney stones can easily cause a kidney or bladder infection. Do you drink enough water? When was the last time you had a UA?

I honestly don't think it's the Mestinon but the Mestinon revealing something else. It could be the drug but don't rule out other medical conditions.

Do you eat things like sunflower seeds or beans? Seeds, nuts and beans are great sources of protein, as are things like quinoa. You need those amino acids, fiber, good protein and omega 3's. Also, foods like avacados and peanuts (are you allergic?) can help with balancing any blood sugar issues. Avacados are high in potassium, so be cautious. Too much potassium and MG don't mix.

Maybe you should see a nutritionist.

Annie

And not to scare you - or anyone else - but have you seen any chemtrails overhead?

http://theintelhub.com/2011/03/30/se...-like-roaches/

Or could it be fluoride toxicity?

http://emedicine.medscape.com/articl...overview#a0104

Fluoride is now put in almost anything and is toxic. It is not meant to be ingested. I have no idea if it's in Mestinon Syrup or Tablets. It's not listed but that doesn't mean it isn't in there!!!

Susan,
You live in Arizona, right?

Google 'radon in Arizona'. You will find plenty of info.

Radon contamination has become an issue is different parts of the country - for cellars of homes, water supply, farming, etc. Some folks are extremely sensitive and swear that it negatively impacts their daily lives. Cross check some of the symptoms with what you have been experiencing and see what you think.

One other thought. If you are applying for SSDI, you may not want your doc to officially decrease your medication at this time.

Annie,

I haven't had a UA for a while (since about 2004), haven't had any trouble for years since I stopped drinking soda and have had no need for a test.

I do drink plenty of water now, but before I got MG I didn't, this probably contributed to the soda problem. I still have the effect because every once in a while I take a sip of something bubbly, and I get pains in my back where my kidneys are.

I eat lots of beans since I am not allergic to them, probably eat them about every 2nd or 3rd day. I love nuts but if any allergy kicks in I have to avoid nuts or I get an allergic reaction to them too, including sunflower seeds. I eat quinoa, chia seeds and amaranth with no problem so I am increasing the amounts I eat of these foods. I love avecados and do eat them every few weeks, no allergy and they make me feel good, too. Peanuts seem okay as long as I get organic peanuts...sometimes regular peanuts give me a slight allergic reaction.

I'd like to go to a nutritionist, I've had it on my list of things to do for a while, just never have the energy to look into it and make an appointment...I think it is a great idea....I wish someone would make appointments for me.

As for those chemtrails, they worry me, but I don't talk about it much because it is a controversial topic. I do know that my first MG symptoms started shortly after I drove by a cotton field that had just been sprayed from a low flying airplane, maybe a few weeks later but I can't remember now. I felt awful afterwards and took allergy medicine and was still taking it when MG developed. I've looked up some of the information about the chemicals being sprayed into the sky, pretty scary, and often wonder if it contributes to all the autoimmune disorders.

As I talk about my MG more and more openly, I'm finding that everyone I know, knows somebody with an autoimmune disorder...seems AI disorders are extremely widespread these days. I wonder if there is a relationship between the geoengineering projects that spray chemicals in the sky and AI disorders...

Fluoride...I've stopped using fluoride in my toothpast, probably about 6 months ago, and I think it makes me feel better. I do know my gums in my mouth are doing better without the fluoride. I decided one less exposure to a poison may help my MG symptoms...but I do know fluoride is everywhere, so hard to avoid. Fluoride is not added to the water here but it is present at low levels.

Something else I noticed today, when I decided to skip breakfast, and then I skipped lunch too (this is not a normal thing for me), is that I felt better. I drank water only during the this time. When I ate an early dinner I didn't have any reaction that I have been having to food or Mestinon. I'm going to try this again unless I am really hungry, to see if this effect is repeatable. I also didn't take Mestinon until later with food, I was strong enough that I didn't need it until in the afternoon. Maybe I need to fast once in a while...it seems like I noticed an effect on fasting with reduced MG symptoms a while ago but can't remember clearly.

Sue, radon? There is radon around here...I live in a house that is poorly insulated and there is lots of air flow, in fact I open the windows most of the time and don't have a basement, so this is unlikely, but I guess you never know. Been a long time, many years since this house has been tested for radon. And you are right about the Mestinon dose and SSD, probably not a good time to ask...I probably won't get SSD because my symptoms are tolerable at the moment...I do wish they would be consistant so I can figure out how to live my life...

Thank you!

Not to be controversial either . . . watch this.

http://www.youtube.com/watch?v=bgdLDtiFXNo

Anything that effects our health is worth knowing about. Those comments on top are based on facts. To further disturb you, those aluminum nanoparticles get into your body and stay there. They also spray barium. Nanoparticles are EMF receptors and transmitters. In other words, nanoparticles can amp up the EMF signal coming into your body. For example, via cell phones, computers, HAARP array in Alaska, etc. They have done studies that show what this does is to cause DNA damage. I have more info but it makes me want to puke to even think about it.

Look up Zeolite.

Sunflowers are not nuts/legumes. They are seeds. They're in the same food family as the dahlia and the jerusalem artichoke. Maybe you need allergy testing again.

Annie

Food allergies
 

Food intolerances are notoriously difficult to test for, although testing is done. When I was practicing pediatrics we referred to the big five, milk, wheat corn, chocolate, and eggs. In my practice it was overwhelmingly milk and corn. I started with the child's favorite food, or anything they had cravings for, because that was usually the offender (sadly). They were to go five days in a row without it (often took longer because these ingredients turn up in lots of things and it's harder for a child to control diet), then eat everything they had been missing with that ingredient. If we were right, the effects were striking if not always the same, and there was no problem keeping the child on the diet. As they grew older they seemed to be able to tolerate these foods better, but when stressed by illness or other allergens, they needed to come off again. I actually had one little girl who refused to take the challenge because she felt so much better off milk. (True food allergies like nuts and shellfish are life threatening, not something to mess around with.) I suspect the big five are true for adults as well and a good place start. It avoids the need for fasting, which does make people feel better, but confuses the picture in the long run and we need good nutrition with this disease. Good luck with checking these things out, if real, it makes a world of difference in how you feel. nc

I think that many times it is not only a matter of what you ingest, or are exposed to, but how much.

For instance almonds contain cyanide which is a lethal poison, but you can safely eat almonds. This is because it is a very small amount.

water is not considered a dangerous substance, but you can die from drinking abnormal amounts of it, because it will lead to significant alteration in your electrolyte balance.

It also depends on what the food does-if it affects a metabolic pathway, or activates the immune system and how.

For instance, patients with celiac can not be exposed to even a very small amount of gluten, whereas patients with milk intolerance can have a small amount of milk containing products with no ill effects.

I just returned from a 5 wk hiatus/vacation. We only have limited brief internet at a free wifi at our laundromat.

I find this post very interesting. The first thing I thought of was
dumping syndrome.

http://www.mayoclinic.com/health/dum...ndrome/DS00715

This happens when motility of the GI tract is upset and overstimulated. Mestinon certainly can do that. Anyone can have dumping syndrome (not just bariatric patients).

Good thought, Mrs. D. I just wanted to augment what she said about dumping syndrome. Mestinon can cause a sudden increase in peristalsis and, therefore, dump food you just ate into the small intestine before it gets a chance to be digested well first in the stomach. Since many of you eat with Mestinon to reduce some of it's side effects, that's a possibility. I had dumping syndrome from a lack of acetylcholine but recovered after I started taking Betaine HCL with my meals. No, I don't recommend you try that! Too much stomach acid isn't good either.

A compromise would be to only have the dose of Mestinon with a moderate or small meal (not a large one)...one with low sugar low carb, and some fat.

Fatty meals reduce dumping. Sugar and carb content promote it. Large meals are OUT for people with this reaction, to the drug, or who have dumping connected to other medical reasons.

Other interactions - a note on your comment
 

This is a note on your comment below. You are also a woman, and as such - you have varying levels of hormones in your body to contend with; this is also a factor. Your hormone fluctuations will affect your body's cortisol production, which is also cyclic. Cortisol adversely affects mestonin effectiveness.

Source: Adverse interaction between steroid hormones and anticholinesterase drugs BERNARD M. PATTEN, KATHARINE L. OLIVER, W. KING ENGEL

it's the cortisol -
 

Cortisol counteracts insulin, contributes to hyperglycemia-causing hepatic gluconeogenesis and inhibits the peripheral use of glucose (insulin resistance) by decreasing the translocation of glucose transporters (especially GLUT4) to the cell membrane.

auto immune diet (AI Diet)
 

yea have you guys tried the Autoimmune Diet? I'm using it and it is helping. But not always easy to follow, but when i get off it i can tell qutie a bit fo difference.