OK, I know I'm suppose to be taking a certain amount of Mestinon everyday (60 mg 3 x's a day). I'm ramping up and not nearly where my dr wants me to be.

Today, I had a real scary episode. I had been at a women's conference for church for about three hours this morning and was there for three hours last night. I did get a good nights sleep which was a blessing because I know I needed it. Anyway, by the time I got home I was so very weak. I just had to get in bed! I ate a quick lunch first and I was having trouble chewing, but I did finish my meal. By the time got in bed I was having a hard time talking and it was hard to breathe. I just didn't have the energy, I was so weak. It was very scary. I ended up sleeping for about two hours. So I guess what I want to know is would it have helped me if I would have taken more Mestinon at that point?

Thanks for any input. Sorry to be asking so many questions.

Shalynn

I found Mestinon too harsh to tolerate. It sent me to the ER, because it was too much too soon. (60 mg x 3)

That scared me more than anything, because I could not move a muscle for five hours. I stopped taking Mestion, but my breathing was still a challenge for me.

Eventually, I was told by my doctor to get back on them, but start with half a tab.

I must say that I am now more comfortable with Mestinon, and I have increased the dosage to the recommended dosage of 60mg/3times a day. It has helped controlled the symptoms, because once I start trying to skip a dosage, I get the same symptoms.

I LOVE Mestinon. The 60mg at first sent me to hospital er.

Mestinon has a 4 hour range of staying in the blood stream. So I am now on 30-60 mg every 3 hours. The 30 mg is what I call the daily stabilizer.

I take the pill, wait 30mins and then I can take other daily pills (helps swallowing muscles) walk the dog as muscles now have "the energy source" to function.

In other words, my window of function is 30 mins after a pill -I can go for about 1 1/2 hours, then the next 30 mins I am crashing but have to wait for the 3rd hour before another pill.

If I go to the docs, conferences etc. due to the extra stress and demand of energy, I will start the day with 30 mg, then a 60, then a 30, a 60mg at end of day with a 30 before bedtime.

On low key regular days I simply take 30mg every 3 hours. Extra stress, activity, heat, cold etc can cause a bodily need for more Mestinon.

Just be very careful as an increase will cause cramping, diarrhea, runny nose, but mostly MORE weakness if the activity/stress level is not demanding a NEED for more Mestinon.

The lower dosage taken more frequently has been my safety net and I do not get any side affects this way and by taking the pill on the third hour I avoid a melt down for most days.

Go to Myasthenia Gravis chat room as there is more info on Mestinon there.

Hope this helps.

Also, you can tell if you have taken too much as the mucus(mouth, nose) will increase or you will start to feel cramping. If this is the case for me I will get up and do extra activity to increase body's need to help alleviate excess of mestinon in body - like walking around block etc until I feel symptoms of too much have subsided.

Sometimes if I have taken a 30mg and my breathing is still not improved I will increase by 15 mg and that will usually stabilize breathing.

My suggestion is go slowly, watch how your body responds, how much you need for different activities. CLose monitoring is needed. But, its my life saver.

Shalynn, If you have MG, yes, Mestinon would've helped!

The more you do, the worse MG gets. And it can get exponentially worse, like the Richter scale. If you don't get enough sleep, it can get worse. The more your body gets heated up, even in cold weather, it can get worse. Socializing is probably the hardest thing to do because you use so many muscles and talking is hard on breathing. In 2005, I had an exacerbation of my MG from socializing with family. It tanked my breathing. So getting used to thinking about every little thing you do as an MG stressor takes time. Every activity takes away from the muscle strength you have. A good night's sleep is essential!

This is what my neuro had me do, which you should not follow because you aren't me. Though have a conversation about this with your neuro. He had me increase the time between doses first, so that my body was getting a steady stream of acetylcholine. Then he gradually increased the dose amount. It's important that you get used to taking it and knowing how it affects you first before you have too large a jump in dose.

I think, from what you described, that you need to tell your neuro that you were getting much worse. You do know that you have to be off of Mestinon for the tests, right? When are you having them?

If you ever get to the point where you can't swallow or breathe well or a have sudden increase of weakness or bad generalized weakness, it's time for the ER. Don't hesitate. And don't panic! MG can go downhill fast and there's no way to predict how quickly that will happen.

Just wait until you are drinking something like LaCroix, with bubbles, and it finds its way up into your nose and eyes. Or when you are taking a shower and the water is running down your face but ends up going up your nose. MG doesn't pay attention to gravity. Muscles are what moves food and liquids through the GI tract and when they don't work, the food and juice goes elsewhere or nowhere!

Make sure they run the MuSK test, if they haven't already.

Annie

Yeah, it takes a while to realize what kinds of things are wearing you out! Socializing doesn't sound exhausting, but it does me in every time. Also, church on Sunday--I feel like I can stand for hymns and prayers just fine--there's sitting in between--but it wears out the muscles in my sides, and by the time it's over I can't walk well.

Someone said that the effect of Mestinon is hard to notice, but the effect of not taking it is easy. That's how it is with me. I often feel like it's not helping, until I forget a dose and end up on the floor thinking about the inadequacy of my house-keeping (the dust is just a lot more noticeable from down there...).

Abby

When I was put on mestinnon in the hosp during a myasthenic crisis it was 60mg x3 daily. I ended up back in the hosp about 4 days later because I was trying to do basic things at home. I hadnt retruned to work yet and had tried a quik trip to the groc store but fell twice so had to go home without buying anything.
At the second visit it was because my breathing had worsened as I ttried to to do a few of these things. The put me on 75mg x 3 and let me go home. I could feel the increased strength. But a couple days later I had gone to Walgreens and was excited that my body was doing so much better yet when I went to check out my mouth had this locked up thing that slurrred my speech. I was also having strong bouts of twitching in my diaphagm when I would sneeze or yawn or lay down. I called the neuro after the slurred speech. He said back to 6omg. But at 60mg I couldnt return to my partitme job so I lost my job. It works better for my breathing than my legs and such. But only in the context of limited activity.

During the winter I get better from the cold and my body starts acting like it needs less mestinon so I had to take less in the winter.
Annie59

I've found that since staring Mestinon only a week ago I am able to get more done with less difficulty. The doctor has started me on a small dose (30mg 4x daily), no real side effects to speak of either. Just being able to walk up steps in an almost normal fashion has been a great improvement in itself!! I have a bit more stamina as well.

Make sure you speak to your neuro about any problems you think you may be having, no matter how big or small. Together both of you will figure out what dose works best for your activity levels and the needs of your body to make things easier.

Hope you get everything figured out,
Rachel

Sorry about my delay in getting back here. I do appreciate all of your help.

Poetist~I'm sorry about your reaction to Mestinon; that must have been scary! I'm glad you can tolerate it now. I know I need to really try hard and stick it out with this because I do think it is helping me some even at this low dose.

Tresa~ I'm sorry you had a hard time with Mestinon at first too. It sounds like you have a good schedule worked out for yourself. I have been taking 15 mg three times a day. I want to go up to 30 mg for one dose a week until I'm up to 90mg total per day, then I'll ramp up to a higher dose. It helps to see what others have done. I'm wondering if the 15 mg dose can really be helping me at all? What do you think? Oh, where is the chat room?Thanks for your input.

AnnieB3~I can really see how several different things can affect me, each stressor adding another layer causing me to get closer to a crash. Talking does wear me out, having visitors can wear me out. People, of course, don't really get this. I sort of feel like I'm uncoordinated because I can't eat, talk and breath at the same time. It almost always affects my breathing. I've had EMG's and all of the blood work done, so far nothing has shown up. I've been tested out the wazoo for everything else. My Ophthalmologist suspected MG based on my Ptosis and other symptoms that I described to her. She referred me to a neuro as she wanted me on a trial of Mestinon. My appointment got pushed back though and when I saw my new PCP he felt as if I should be started on the Mestinon now. That's probably more than you wanted to know, but it's where I am now. Thanks for your help.

Abby~I can relate to just about everything you said. I'm a very social person (at least I used to be) and I talk a lot. It's so draining now. It's interesting to hear you say that you can tell when you've not taken the Mestinon. I hope it helps me enough that I can get to that point. I take Neurontin for Neuropathy and I can really tell when I need a dose of it. Thanks for taking the time to reply.

I'll get back here tonight or tomorrow to reply to everyone else. Thanks again for all of your help. I really feel like I'm learning a lot here.

Shalynn, I don't mind an entire page of information! I think anything we talk about helps. For example, the fact that you are taking Neurontin for a neuropathy speaks volumes.

Did you know that Neurontin can make MG worse and, in some cases, has brought on MG?

http://www.ncbi.nlm.nih.gov/pubmed/12855353

http://www.ncbi.nlm.nih.gov/pubmed/10918256

I'm sorry if I can't recall this but have you had your B12 checked? If not, get it done! Did they ever give you a cause for the neuropathy or just throw a drug at you?

15 mg. is a low dose of Mestinon. Are you sensitive to meds?

I think you need more answers than you are getting. Throwing a drug at a problem is the "cheap" and easy way to hurry a patient out of the clinic but it's not the BEST way.

Please be careful about doing too much because MG can get worse very quickly.

Annie