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Burst of Energy

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Unread 12-05-2012, 07:42 PM   #1
uncledave
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Default Burst of Energy

I was diagnosed with MG about 6 months ago. I'm still in the process of determining my proper dosage of Mestinon. My neuro told me to experiment, so here goes. One of my main symptoms has been an inability to walk any distance without having to sit down and rest a little before continuing. I had started using a wheelchair for shopping. Starting on 1/2 tablet 4 times a day helped my walking quite a bit. Now I am on 1tab, 1/2 tab, 1 tab, 1/2 tab each day. This helps even more. Two days ago I experimented and took 2 tablets at once. There was a BIG improvement in my symptoms. Not only could a walk a longer distance but I felt ENERGISED! I walked energetically! I walked so much that my calf muscles are still somewhat sore. I can understand how the Mestinon improves strength, but my question is do any of you also experience a surge of energy with the correct dosage?
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Unread 12-05-2012, 08:15 PM   #2
Quandry
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Sometimes, about a half hour after I take my mestinon, I feel a burst of energy. I also sweat when I get this burst. My daughter said I'm moving quicker sometimes since taking this med. Before the Mestinon I had a hard time breathing in and out. Now my breathing is much better.
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Unread 12-05-2012, 08:19 PM   #3
uncledave
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Quote:
Originally Posted by Quandry View Post
Sometimes, about a half hour after I take my mestinon, I feel a burst of energy. I also sweat when I get this burst. My daughter said I'm moving quicker sometimes since taking this med. Before the Mestinon I had a hard time breathing in and out. Now my breathing is much better.
I too was sweating. That must be part of it too. In the past I have had a couple of episodes of minor breathing problems. What bothered me most was that I was beginning to get strangled every time I ate or drank. Thank God that symptom is gone now.

I'm going to try my experiment again in a few days to see if it was real or a fluke. If it's real I may ask the neuro about switching to 2 tablets instead of 1 tablet alternated with 1/2 tablet.

Thanks for replying.
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Unread 12-05-2012, 09:22 PM   #4
AnnieB3
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Hi, uncledave. Do you like to be called Dave?

I assume you're talking about a 60 mg. Mestinon tablet. Not only does MG have a big learning curve, Mestinon does too. Sometimes more is not better.

There are two things you can change: The dose amount and the dose frequency. It's always best to check in with your neuro before you make any changes.

120 mg., or 2 tablets, is probably too much. Why? You run the risk of flooding your neuromuscular junction with too much acetylcholine. There are many studies on keeping dosing of Mestinon no greater than 100 mg. Yes, there are exceptions to this but most neurologist do not like to dose above that because you could wind up with a cholinergic crisis (too much acetylcholine). An MG crisis is when you don't have enough acetylcholine and are much weaker.

Sometimes having a consistent dose of Mestinon throughout the day works better. Like 60 - 90 mg. every 3 - 4 hours. But, again, talk to your neuro.

I apologize if this sounds too childlike but I think it's important to really understand what this disease and Mestinon does.

You know how when you drop something on the floor and then have to clean it up? That's what is going on in the neuromuscular junction. Acetylcholine/ACh (ah-seat-ill-co-lean) is the muscle gas that keeps our muscles strong. Acetylcholinesterase/AChE (ah-seat-ill-co-lean-es-ter-aze) is the enzyme that comes in to clean up the ACh mess. That process happens in everyone's body, whether they have MG or not.

So, because we have MG and not enough acetylcholine gets to our muscles due to the damaged muscle receptors, Mestinon BLOCKS that AChE/enzyme from doing it's job of cleaning ACh/muscle gas up so that we can use it longer.

The problem is that when you block too much of the enzyme, too much muscle gas can build up. That happens if you take too much Mestinon. So you can get weaker on too much and get into trouble. You can also have more side effects, like Quandry was talking about with the sweating.

I attached the Mestinon pdf below for you.

I'm glad you felt better. It's such a hard balance between not enough and too much with Mestinon. And, sometimes, if you do more activities, you might need a little more Mestinon. I can take 10 mg. more if I'm going out, for example. I'm already on a high end dose.

Everyone is different and what works for you might not work for someone else. I hope you can figure out the right balance.

Annie
Attached Files
File Type: pdf Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 39 views)
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Unread 12-05-2012, 10:33 PM   #5
uncledave
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Quote:
Originally Posted by AnnieB3 View Post
Hi, uncledave. Do you like to be called Dave?

I assume you're talking about a 60 mg. Mestinon tablet. Not only does MG have a big learning curve, Mestinon does too. Sometimes more is not better.

There are two things you can change: The dose amount and the dose frequency. It's always best to check in with your neuro before you make any changes.

120 mg., or 2 tablets, is probably too much. Why? You run the risk of flooding your neuromuscular junction with too much acetylcholine. There are many studies on keeping dosing of Mestinon no greater than 100 mg. Yes, there are exceptions to this but most neurologist do not like to dose above that because you could wind up with a cholinergic crisis (too much acetylcholine). An MG crisis is when you don't have enough acetylcholine and are much weaker.

Sometimes having a consistent dose of Mestinon throughout the day works better. Like 60 - 90 mg. every 3 - 4 hours. But, again, talk to your neuro.

I apologize if this sounds too childlike but I think it's important to really understand what this disease and Mestinon does.

You know how when you drop something on the floor and then have to clean it up? That's what is going on in the neuromuscular junction. Acetylcholine/ACh (ah-seat-ill-co-lean) is the muscle gas that keeps our muscles strong. Acetylcholinesterase/AChE (ah-seat-ill-co-lean-es-ter-aze) is the enzyme that comes in to clean up the ACh mess. That process happens in everyone's body, whether they have MG or not.

So, because we have MG and not enough acetylcholine gets to our muscles due to the damaged muscle receptors, Mestinon BLOCKS that AChE/enzyme from doing it's job of cleaning ACh/muscle gas up so that we can use it longer.

The problem is that when you block too much of the enzyme, too much muscle gas can build up. That happens if you take too much Mestinon. So you can get weaker on too much and get into trouble. You can also have more side effects, like Quandry was talking about with the sweating.

I attached the Mestinon pdf below for you.

I'm glad you felt better. It's such a hard balance between not enough and too much with Mestinon. And, sometimes, if you do more activities, you might need a little more Mestinon. I can take 10 mg. more if I'm going out, for example. I'm already on a high end dose.

Everyone is different and what works for you might not work for someone else. I hope you can figure out the right balance.

Annie
Hi Annie! Yes, I like being called Dave or Uncle Dave either one. Thanks for replying.

My neuro told me of the effects of too much but also told me that 2 tablets probably wouldn't hurt. I see on the literature you sent me that the average dosage is 10 60mg tablets per day. The day I am talking about I only took 6 in total. I am being very careful so as not to bring on a crisis. I have not repeated this dosage either. I will wait until I see my neuro. On the other hand, the next time I go shopping I will probably take two again just before I start. I felt like a million dollars. I haven't had that kind of energy in 30 years.
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Unread 12-05-2012, 11:36 PM   #6
AnnieB3
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Thanks, Dave.

The thing is that the amount per day is deceptive. It's really the amount at one dosage time and how often to take it that should be carefully prescribed.

For example, I take 90 mg. every three hours, round the clock. Yeah, my MG wakes me up when I need it. Ten 60 mg. tablets totals 600 mg. I take 720 mg. per day. But, for me, that's what works. I worked very closely with my neuro(s) to get to that point.

I'm really glad you felt energized! Just don't let that fool you into thinking you can leap tall buildings in a single bound.

Annie
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Unread 12-05-2012, 11:42 PM   #7
uncledave
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Quote:
Originally Posted by AnnieB3 View Post
Thanks, Dave.

The thing is that the amount per day is deceptive. It's really the amount at one dosage time and how often to take it that should be carefully prescribed.

For example, I take 90 mg. every three hours, round the clock. Yeah, my MG wakes me up when I need it. Ten 60 mg. tablets totals 600 mg. I take 720 mg. per day. But, for me, that's what works. I worked very closely with my neuro(s) to get to that point.

I'm really glad you felt energized! Just don't let that fool you into thinking you can leap tall buildings in a single bound.

Annie
At 62 I realise my days of leaping tall buildings are over even if the doctor prescribes TNT.

At any rate, I am working with my neuro to determine the dosage. Had he not told me that 2 tablets would be OK I wouldn't have tried it. He told me that the MAX dose was somewhere between 1000 and 2000 mg if I remember right. At that point, he said, signs of crisis start occurring as there is now too much acetylcholine flooding the system.

I am just really praying that there is a dosage somewhere that will give me the kind of response I got in a sustained manner. It has been very depressing not having any energy these last few years.
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Unread 12-06-2012, 10:59 AM   #8
SoftTalker
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Default I agree with Annie

Annie, this is a brilliant explanation about Mestinon. Just brilliant! (See quote below - from Annie)

I too, agree that two 60 mg tablets (120 mg total) - taken at the same time is probably too much.

(Dave, please don't take offense, we are two anonymous MG patients speaking from experience). There may be others who are able to tolerate this dose.


I had a bad experience (within the past couple of years - when dealing with another illness and MG) - with taking (one each) mestinon dose (60 mg) - too close together. This was probably within 2 hours - 2/12 hours of each other. Physical reaction was extreme weakness and muscle fasciculations in limbs. Thankfully my breathing was not affected greatly. Not a good experience for me.

*********

Dave, good luck with your "learning curve" with myasthenia gravis and mestinon. Keep your doctor well informed regarding your response to the medication. As Annie said, we are all different. Remember that there are not many of us (with MG) and your doctor is doing his best with the MG information available and his experience with MG patients.


p.s. - I think physicians (treating and research) could (possibly) learn so much from reading the postings in this group. That is, if they had the time and curiosity.




Quote:
Originally Posted by AnnieB3 View Post

I assume you're talking about a 60 mg. Mestinon tablet. Not only does MG have a big learning curve, Mestinon does too. Sometimes more is not better.

There are two things you can change: The dose amount and the dose frequency. It's always best to check in with your neuro before you make any changes.

120 mg., or 2 tablets, is probably too much. Why? You run the risk of flooding your neuromuscular junction with too much acetylcholine. There are many studies on keeping dosing of Mestinon no greater than 100 mg. Yes, there are exceptions to this but most neurologist do not like to dose above that because you could wind up with a cholinergic crisis (too much acetylcholine). An MG crisis is when you don't have enough acetylcholine and are much weaker.

Sometimes having a consistent dose of Mestinon throughout the day works better. Like 60 - 90 mg. every 3 - 4 hours. But, again, talk to your neuro.

I apologize if this sounds too childlike but I think it's important to really understand what this disease and Mestinon does.

You know how when you drop something on the floor and then have to clean it up? That's what is going on in the neuromuscular junction. Acetylcholine/ACh (ah-seat-ill-co-lean) is the muscle gas that keeps our muscles strong. Acetylcholinesterase/AChE (ah-seat-ill-co-lean-es-ter-aze) is the enzyme that comes in to clean up the ACh mess. That process happens in everyone's body, whether they have MG or not.

So, because we have MG and not enough acetylcholine gets to our muscles due to the damaged muscle receptors, Mestinon BLOCKS that AChE/enzyme from doing it's job of cleaning ACh/muscle gas up so that we can use it longer.

The problem is that when you block too much of the enzyme, too much muscle gas can build up. That happens if you take too much Mestinon. So you can get weaker on too much and get into trouble. You can also have more side effects, like Quandry was talking about with the sweating.

I attached the Mestinon pdf below for you.

I'm glad you felt better. It's such a hard balance between not enough and too much with Mestinon. And, sometimes, if you do more activities, you might need a little more Mestinon. I can take 10 mg. more if I'm going out, for example. I'm already on a high end dose.

Everyone is different and what works for you might not work for someone else. I hope you can figure out the right balance.

Annie
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Unread 12-07-2012, 04:32 AM   #9
alice md
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Hi Dave,

I think that your neurologist's approach of gradually going up with the dose is very wise.

I can understand wanting to feel great fast, but I think that with MG it is much better to slowly feel a little better each day.

When I first met my current neurologist I was surprised at his very slow and gentle (almost homeopathic) approach with every change in medications or even food supplements.

But, for the first time in 6 years, under his care my "crazy" fluctuations and dramatic changes became much less severe and for the first time I experienced a very slow and gradual uphill trend instead of downward slope.

He told me that from his experience with MG he doesn't like dramatic improvements as those are many times followed by quite as dramatic worsening. (at least from my personal experience this is very true).

I think you should just keep on slowly going up, adding 1/2 pill to your dose every few days and after your body has adjusted to the previous dosing. This way you will eventually find the safest and most effective dose.
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Unread 12-07-2012, 04:30 PM   #10
uncledave
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Quote:
Originally Posted by alice md View Post
Hi Dave,

I think that your neurologist's approach of gradually going up with the dose is very wise.

I can understand wanting to feel great fast, but I think that with MG it is much better to slowly feel a little better each day.

When I first met my current neurologist I was surprised at his very slow and gentle (almost homeopathic) approach with every change in medications or even food supplements.

But, for the first time in 6 years, under his care my "crazy" fluctuations and dramatic changes became much less severe and for the first time I experienced a very slow and gradual uphill trend instead of downward slope.

He told me that from his experience with MG he doesn't like dramatic improvements as those are many times followed by quite as dramatic worsening. (at least from my personal experience this is very true).

I think you should just keep on slowly going up, adding 1/2 pill to your dose every few days and after your body has adjusted to the previous dosing. This way you will eventually find the safest and most effective dose.
Hi Alice, and thanks for your post.

I think he is wise too. Whatever "experimenting" I have done has been very cautious. I understand fully that the main consequence of an overdose is that one's muscles become weaker and too much mestinon can cause breathing difficulties. My experience was the exact opposite of that. I had a sudden and sustained burst of energy. So I doubt very much that two tablets were too much.

On the other hand, I tried it again yesterday and I didn't get that big burst, so now I'm back on my regular schedule until I see my neurologist again. In either case I am worlds better than I was just a few months ago.

It would be so nice if the disease weren't so variable. One day can be much different than the next even on the same dosage of medication. It's almost as hard to learn to manage as is diabetes and insulin.
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