What Does Mestinon Do For You?

[hilbiligrl]

My doc promised to do some studying up on mestinon, as ive been asking for it for a few months to try and see if it will help me gain back some life, as my worst enemy is the relentless exhaustion and weakness. He hasn't prescribed it to anyone, and he doesnt know much about it and doesnt feel comfortable prescribing it since I have tested negative for MG twice now. I was wandering if those of you that mestinon helps, would you care to post what good it has done and is doing for you? I had told him about this site and all the intelligent women and men who come from medical type careers, etc..... and told him about how mestinon seems to be a drug docs will try with various types of DYS. He wanted to visit the forum and read about what real people like me say about it here, so i gave him the web address and told him to read the DYS forum..... im hoping he will read the replies on this post.... keeping fingers crossed!

thanks to all of y'all!

tennille

[sue1234]

I don't take it, but would like to hear the replies, too!

[rach73]

Hiya,

I'm in the could have MG camp also, I have been for 4 years. I have ptosis unilateral and bilateral, I have shortness of breath, problems swallowing and choking, I also get double vision and blurred vision. When I take mestinon all these issues resolve apart from the double vision and blurred vision. I have had countless negative blood tests, one positive tensilon test, one negative tensilon test and every ice pack test I have is positive for MG. All my SFEMGS were normal.

I am typing this hooked up to my oxygen concentrator (as I have been most of the day). This week has been the week from **** for me as I have had awful ptosis and breathing problems. I take mestinon very sparingly maybe a couple of times a month as I really do not tolerate it very well. I get awful stomach cramps etc

When I take mestinon I feel really good I have more energy, I don't feel as dizzy standing up and it generally makes my POTS symptoms lessen, its just I have mega side effects from it. Most people with POTS take 60mg 3 times a day, although I would start on a much lower dose and gradually build it up as if you do get the side effects it can be nasty.

The reason I take mestinon so sparingly is I really suffer, so I only take it when I can't see or I'm having problems breathing, like today. Unfortunately everyday this week I have had to take mestinon and my stomach is raw. There are drugs such as propanthaline you can take to minimize the symptoms, its just I have gastroparesis and can't take them as they slow my gut down, causing me more problems.

Mestinon is brilliant if you can tolerate it, it definately helps with my POTS. If I could take it regularly I would but we just dont get on.

I hope this helps

Rach

[misstraci]

If you don't mind me asking, what is MG?

[hilbiligrl]

Rach,

thanks for your reply! It gives me hope.... but, at the same time, i have stomach issues as well. I just wander if taking either/or/both DGL and slippery elm would help with the stomach issues. But then slippery elm can hinder the absorption of meds.... as it coats the stomach and intestines..... i haven't tried slippery elm, but i think im gonna pick some up today. The DGL works wonders for me. If i have a raw stomach, i chew up 2 tablets and within mins i feel relief..... im out of that too.

I guess im just thinking aloud. This has been a bad week for me too.... bedridden all week..... and my coping mechanisms just arent working....

thanks again rach!

i cant wait to hear more!!

tennille

[rach73]

Hi

MG is the wonderful auto immune disease Myasthenia Gravis, hence why my blog is called the myasthenia kid.

The disease makes the patients body attack the acetylcholine receptors on the muscles. Mestinon give the body extra acetylcholine so the available receptors can pick up more of this chemical. Main symptoms with MG are ptosis, muscle weakness, choking, swallowing issues, fatigue and breathing problems which can lead into what is known as an MG crisis, where patients become too weak to breathe. For more info I've added the link below.

http://en.wikipedia.org/wiki/Myasthenia_Gravis

that will give you more info. In the USA its MG awareness month so we are doing our bit!

(still on the oxygen, breathing is better after 60mg of mestinon but stomach is cramping. You win some you lose some)

Rach

[hilbiligrl]

Rach,

I have all those symptoms.... but i also have many more. I was tested twice by whatever the device it is that they stick those long needles into your muscle and zap it over and over.... they done my left hand,arm and left neck muscles. I tested negative for mg both times. One test i didnt like to repeat.

thanks for sharing the info!

tennille

[Tachy Phlegming]

Uh, everything?...

I was really physically miserable before I started it. I am off of so many OTC meds I had absolutely needed for years. I don't feel like a space cadet nearly as often. And I don't have one single side effect.

I breathe...

If you are very very sick right now, you might want to be pretty careful about dosing at first -- like maybe trying 1/4 pill at first then 1/4 more within a half hour or hour. I was slow about ramping up to 2/day. However, if I don't take this much now, it appears that I begin to be symptomatic with a bunch of nonsense within days.

If there is any way you can get to try it and you have some particular reason to think it may help you, it may well be worth every amount of effort trying to convince your doctor. Some appreciable number of people on here have found that it helps more than any other medication they have been prescribed.

And p.s., it also works at the autonomic ganglia if that is of any interest.

[hilbiligrl]

Tachy, I got your pm... i will bet getting back to you today. Thank you so very much for your reply via both ways!

I wanted to add an extra question to everyone on it: Does mestinon help headaches?

thanks

tennille

[abetterjulie]

So, what are the bad side effects? This is a drug I have also been considering...

[lgtaylor100]

I am also considering Mestonin. I mentioned it to my doctor and he said it would be like killing a fly with a sledge hammer. Apparently, he doesn't understand that I am in need of a sledge hammer and that dysautonomia is no fly. He also said something about it increasing the fatigue. I'm confused because I read on several posts that it helps the fatigue.

I also feel that if I could show my doctor these posts maybe he would consider letting me try it.

What are the side effects and please confirm if it has helped you with the fatigue.

Thanks,

Lynne

[rach73]

Hi all,

sorry I have been missing in action for a bit. Im ok just no energy and EDS is being very horrible to me at the moment!

The EMG or SFEMG is the needle test - where they stick pins in you and send an electric current through it to see how your muscles respond. Its considered by many neuros that this is the gold standard test to prove a patient has MG. Very slowly this idea is starting to change as many people with positive bloods test negative on this test and ocular MG up to 50% of patients test negative on this and blood tests. Ive had 4 SFEMGS all very painful all showing nothing.

Side effects from Mestinon. Remember this SLUD its stands for the side effects which are Salivation ( so it can make you drool),Lacrimation can make your eyes run with tears, Urination (it makes you pee),Defication - it makes you poo, either the runs or it increases the number of bowel motions you have.

Its prescribed for POTS and low blood pressure as it increases blood pressure on standing, but not supine. So you may still get low blood pressure when sitting or lying down.

I get stomach problems with mestinon as it causes me to have the runs and stomach cramps. On a very bad day I will also drool and vomit. However it works wonders on my muscle weakness and ptosis.

Rach

[mwise]

Hi!

I have been on Mestinon 60mg 3xday (9am-3pm-9pm) since February 2011. I was diagnosed in December 2010 with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). I could not take Florinef so my Neurologist @ Cleveland Clinic Dr. Shields prescribed Mestinon. Prior to Mestinon, I was bed and chair bound. After I was started on Mestinon, I was able to walk short distances without feeling like I was going to pass out. I did feel stronger and experienced less weakness. It also helped with motility for my Gastroparesis along with taking Domperidone. I really had no side effects with the Mestinon. About 2 weeks later, Dr. Shields added Midodrine 5mg 3xday and boy did I see significant improvement with being able to do things again. I of course experience side effects with the Midodrine, but the benefits out weigh the side effects. I attribute my improvement with Dysautonomia to Mestinon, Midodrine & Domperidone. I consider these 3 medications my life savers along with everything else I am doing to control the symptoms of Dysautonomia which includes loving this forum for all the knowledge, support & hope it provides.

Thank you all

[tinkerbella]

Funny I forgot about the elephant on my chest feeling and that my left eyelid used to droop. I have been tested twice for MG and each time NEG. I really think with all the meds and @ that time hormones for a cancer scare that how could they tell anything was right. I was told that the hormone made blood tests unreliable. So, after being prescribed too much when I was first put on it by the pharmacy, as they had put the wrong instructions on the label and I landed in the hospital for a near bowel obstruction. I now read the instructions and verify with my notes from the doc that I'm taking the correct amount. Always start with a small amout like someone said above, as the side effects can be nasty. I'm rather limited in the med department having tried most and having adverse reactions. They have worked my way up to 60 mg three times a day. The tablets when starting out are smaller amounts and need to be cut. They crumb in hot climates and you can be left with crumbs in the bottom of the container and not enought pills to take. Docs can't prescribe more than the amount needed mine told me. Most docs don't know this comes in a liquid form. Found this out by the Neuo Pots Spec. You will end up with about 8 bottles costing $800 dollars, so I hope you have insurance. You will get one small plastic bottle to pour the large one. If you have IBS go very SLOW. We have a love/hate relationship, but what can I do? I thought that was why they named it POTS .>>>-Bathroom this way --->>>

Bellamia ~

[Tia Koul]

Hiya, just to add my 2 cents, I was on mestinon for about 3-4 years. It is tough on the stomach but worth it. There were no definable improvements that I can put my finger on, but I was able to carry through and complete tasks without running out of energy. That was huge for me. It was a small improvement, but monumental. Seems I have cyclical vomiting, so my cardio took me off it temporarily to see if I would stop throwing up. I did not. But battled getting back on it since I was much sicker at that point, and have yet to get back on it. When I feel a little better I will try again at a lower dosage. But it was/is the only med that actually made me feel better. I take bystolic still and my sleep meds, but nothing touches the symptoms. Good luck!

[skiberthoud]

I love my Mestinon as well. helps with so many of my symptoms - doesn't make them go away but makes them livable! My neuro didn't start me off slow. He started me at 60mg 3xday. Thankfully I didn't have any stomach issues. I actually don't seem to have any neg. side effects at all! It helps with my fatigue, nausea, vomiting, dizziness, tachy...pretty much most things, but it didn't help with the headaches at all. I still get very symptomatic with hormone changes, but other than that everything is much better. When I've had to go off of it for various tests I've been reminded of what life is like off of it and it contrast is unbelievable.

[ramakentesh]

I never got any negative side effects from mestonin other than tiredness and a post dose crash. helped me with relaxation and all the hyper symptoms the most.

[rubytuesday]

I was on Mestinon from Oct. to Dec. but it made me sicker than a dog. My stomach cramped terribly and I was never sure which end things were going to come out--caused terrible nause, vomiting and diarrhea in me. They had to stop it.

[jenglynn]

I took Mestinon while inpatient at Mayo, They gradually increased my dose over three days and by the third day, when

I had my first full dose I immediately felt awful. I was in a cold clammy sweat, bad cramping, and by far the worst headache I'd ever had. I'm not sure why, but it also made me feel very emotional, angry and irritable. After about an hour, a nurse came in to do my orthostatics BPs- no wonder I had a headache- my BP was 190/140 and HR of 42. I felt like my head was going to explode. Keep in mind, my normal lying down BP is 90/70. She did the sitting up BP and it dropped to 140/100 HR 110 (I am guessing a little here because it's been over a month and I don't have my records handy) and standing went to 100/50 HR 180 or 190+, not quite sure. So I remained extremely orthostatic but not hypotensive and the nurse was so happy because I didn't faint. WHAT?.... I wish I would have because my brain would reset and I'd feel normal- this way I had all the pre-syncope symptoms but worse and no relief. I asked to see my doctor and like I said I was also angry and emotional on it as well... Not myself at all, and he tried to tell me he was pleased with the drugs effect. I was in shock, sobbing uncontrollably. I felt like a vessel was going to burst in my head, that is how my headache felt.. And my body is used to VERY low BP. Even on meds, sitting I'm at 70/50 HR 125.

My theory is that they had me on too many BP drugs, plus I was also receiving IVIG infusions, (take Midodrine and Florinef too) and that was just one too many. Maybe if was off the others it could work for me, but after the emotional reaction I had I don't think I'd try it again even if it sounds irrational. It scared me to death and the way I felt when my BP was that high is not an experience I ever want to go through again. That said, I've heard from many that it is their miracle drug and works wonders. It was highly recommended by m octors and even in my medical records states: Mestinon- discontinued against medical advice. So they felt it would have helped with other adjustments.

Jen