Mestinon - too much?
 

I was wondering what everyone's thoughts are about my recent experience (my doctor won't be available for questions until Monday and I do intend to ask him on Monday).


After some outdoor work on Tuesday, I experiences sore muscles.

On Wednesday this got worse and I thought I had just overdone it due to not enough exercise. By the end of the day and continueing Thursday(yesterday) my muscles got even more sore. My muscles on my head, neck and chest were especially sore and tight. I had some kind of headache that seemed to be muscle related since it felt good to massage my head.

I didn't understand what might be causing these muscle cramps/pains. I realized that I felt nervous and my heart rate was higher than usual. This is similar to what I felt when I took too much Mestinon, so my assumption is that I am taking too much Mestinon again.

Today I decided to take 1/2 my usual dose of Mestinon. I am feeling better, in fact much better than usual. The sore muscles are still there but getting better as the day goes by. I have less weakness than usual and not getting tired like I usually do.

I have mild MG while taking Mestinon, but my MG was severe before I started Mestinon.

What is going on? Is my MG improving? Can a person suddenly need less Mestinon? I feel hopeful, but at the same time afraid that these muscle cramps are a sign of some new bad thing happening.

Any thoughts?

Thank you everyone.:)

Susan, That's a good question.

Whenever I've been in doubt, a doctor has run a thyroid panel, chemistry to see if electrolytes are off, CBC, etc. It's always good to rule out other stuff, which is what the urgent care doc did before he sent me off to the hospital right before my MG tanked.

Could you be getting sick?

You don't have any buckthorn plants around, do you? They can cause paralysis in patients with MG.

You could be improving but don't let that fool you! ;) I've experienced times when my MG is "fine" but then others like right now where it flares with the littlest thing I do.

I'm glad you're talking to your doc on Monday. Please mention doing some basic tests to make sure nothing else is going on!

Annie

Desert,

I get the same type of soreness you described, Desert. In the chest, neck, head (with a headache) and back. I have chest muscle weakness and neck weakness from the MG.

The fact that reducing your dosage helped these symptoms seems like there might have been too much mestinon, rendering those muscles weaker which may have caused the muscle strain/pain after the work you were doing.

If that's true (and it's not something else causing the problem), that seems like a promising sign that you can at least reduce your mestinon again. Maybe the MG is slowly, but surely, getting better- that would be kinda really awesome!:)

When you cut your dosage, did you have any problems with your vision? And how 'bout your vision yesterday, and during the muscle pain episodes- was it blurry at all? If all of your symptoms are pretty well-controlled after reducing your mestinon, I think that's a really hopeful sign, especially if the dosage you were on prior to cutting was effective in the past, without these troublesome sx. Seems like the MG may truly be getting better over time.

Definately check with the doc. to be sure though.:hug:
Nicky

DesertFlower, were you wearing gloves when you worked outdoors? What type of work did you do? What did you touch?

my personal oppinion
 

I may be wrong in what I am saying, as it is based on my experience with one patient, that happens to be me. so don't take this as scientific.

but, the way I see it. patients with MG have an abnormality in the ability of their muscles to contract, when "ordered" to do so by the responsible nerve.

taking mestinon, makes the signal from the nerve more "clear and strong", but it can't overcome the entire problem, at least in some patients.

so what happens is that it causes you to use the limited ability of your muscle, thinking that you can, when you actually can't ( I hope what I am saying is clear and makes sense).

so, you take the mestinon and feel like popeye who has taken the spinach, or superman, who has his special suit on, when in fact you are still much more weak then you think.

and then using all your limited muscle energy (being fooled by that extra strengh you think you got from the mestinon), you end up crashing big time.

it took me a very long time, and numerous frustrating epidoses, to finally understand that. and even now when I do, I can't resist the temptation to do more then I know I can and should, even when I know the price.

don't know how true this is for you, but hope this helps.


alice.

I think Alice hit it right on the head. Taking less mestinon, I don't think would relieve the pain, but sounds like you strained the muscles and as the days went by the pain lessened.

I know when I take to much mestinon, my vision gets even worse and my tongue twitches and swells. But when I do to much than my muscles hurt more than usual.

Please let us know what your Dr says tomorrow.

Good luck and feel better :)

Thank you everyone!:)

Annie, thank you for the test suggestions. I have an appointment to see my doctor on the 28th, and I will be calling him on Monday.

And I do think I may be getting sick. I have a scratchy throat and sinus pressure, but no fever and I feel generally ok. Can being sick make MG symptoms less?

There are Buckthorn family plants here, Condalia and Ziziphus species. I haven't had any close contact with them recently, but there are three at the edge of my garden. I will get more information about these plants.

I don't have any hopes of improving, I only hope for some amount of stability and these new experiences are scary.

I hope you are feeling better Annie.


Nicky, you get this feeling too! I wonder if it has the same cause as mine. With Mestinon my neck and chest are not weak. This chest pressure with sore head and neck are not fun, and mine gets worse every time I take Mestinon.

My vision has been great (normal, lol) since Tuesday when I was working and has not gotten worse since I decreased my Mestinon dose. In fact, I really haven't felt weak at all, just a little tired like I have worked too hard or that I am getting sick. I feel much better than I have since I got MG, except for the chest/neck/head thing which is new.

Usually my vision is the first thing to go if I feel weak.

I don't understand how things can change so suddenly, especially when it seemed like my MG had stabilized and I had sort of figured out how to live with it.

I am currently taking 15 mg (1/4 of a pill) of Mestinon 3 times a day and it feels like too much. In fact, the Mestinon seems to be making me extra talkative and energetic, like drinking way too much coffee. I am relaxing and doing simple things because I don't want to come crashing down with weakness or something worse.

I was taking 30 mg of Mestinon 3 times a day and it was keeping my MG in control as long as I rested some days.

The difference now is that when it is time to take my next dose, I don't feel weak, I can't tell that I need more Mestinon.

I don't know what to think of it.

I did wear gloves most of the time...I touched lots of plants it would be difficult to make a complete list of all the plants I may have touched.

I was trimming plants & adding compost around plants. I did yearly irrigation system checks - which required some kneeling down and getting in the dirt (without my gloves). I did use some iron chelate fertilizer...I will look up info about it to see if there are any health hazards.

There was one fragrant flowering tree nearby that is considered allergenic...African Sumac..but it has not bothered me in the past.

Thank you for making me think about it, I will think about this more and go through my notes.:)

do you have a home blood pressure monitor.
 

I have experienced for last twelve weeks exactly these symtoms of head,neck shoulders and chest and sore muscles.
i bought an electric hand massager which you say helps but it returns.
i know now it was the pred pushing my blood pressure up to 140/80sometimes much higher.
i decided to take myself off pred .My blood pressure has returned to normal and all the systems above are gone .
i experimented which i know I should not have with my brothers bp medicine and when it brought my blood pressure down while I was on pred the symtoms also went .
Therefore i know high blood pressure was causing the symtoms.
I had a stressful situation yesterday and for a short period the symtoms returned .
Stress resolved today symtoms gone.
Hope this helps:grouphug:

Alice, thank you for your thoughts.

I agree with what you are saying, because I have experienced this as well.

This week I had an experience different than usual...instead of having that crash as expected, I got sore muscles which turned into feelings of Mestinon overdose. After pushing myself I usually can feel the need for Mestinon even more strongly...but this was the opposite feeling.

Even today I can feel that something is different than usual, I don't seem to be as weak and even my mind seems to be more clear than it has been since I got MG. But I do have this new feeling of having pressure on my chest and a headache and muscle pains in my head/chest/neck which kept getting worse until I decreased my Mestinon dose. Now these pains are minor and I feel generally good, but I definitely still have MG symptoms just not as much.

Maybe I pushed myself too hard and now my MG will get worse. I don't like this feeling of pressure on my chest, hopefully I am sick or having a reaction to something and it will go away. As for the rest of my usual weakness, it is very minor, but I am still taking Mestinon.

I would rather not push myself but for the time being I have to work at least part time.

MG can be complicated, so many factors involved.

I have been doing one new thing these last two weeks that could be causing this, but I really doubt it. I have been trying to get a small amount of sunshine. I decided that the benefits outweigh any risks for me.

Joanmarie,

I thought at first that I had overworked my muscles, but instead of getting less pain as the days went by, they hurt more and more and then I developed unrelated muscle pains in my chest/head/neck. Then I started getting nervous feelings that I relate to too much Mestinon.

I do think the initial sore muscles were from working like Alice said.

Maybe after I worked I was exposed to something else...chemicals, dust, virus, a plant, etc...and it caused the chest/head/neck pains and extra stiffness. Maybe I was exposed to something that reacts like Mestinon, like a pesticide?

Taking less Mestinon definitely minimized my symptoms immediately, and even now when I take this small dose of Mestinon I get stiff neck/chest muscles and I can't relax my shoulders completely...I think even now I am taking slightly too much.

I hope you and everyone are feeling good. MG is so unpredictable.

I feel guilty complaining about my problems, but it is scary to have something new, I am worried that my MG will be worse after whatever happened to me is over.

PMCPMC

Blood pressure. I don't have a home blood pressure monitor but it should be easy to check it somewhere and a good idea! I have never had high blood pressure that I know of, but new things are happening to me this year.

I can feel my heart beating harder than it usually does. I probably have high blood pressure. What might be causing it? I will get it checked before I call my doctor on Monday.

I am not taking Pred and have been happy that I respond well to Mestinon. I think your decision not to take Pred is a good one.

Stress makes my MG worse, in fact I am sure that stress was one reason I got MG in the first place. I have not had any big stresses this week.

One good effect of whatever is happening to me is that it has made me feel warm! I have been so cold all the time since winter started, but now I am warm and it does feel good.

Thank you for your input.

Interesting that there are others with this head/neck/shoulder/chest feeling that I am experiencing. It is new for me. If it is high blood pressure causing it, then I wonder what is causing high blood pressure?

Are you taking Mestinon or other medicine for your MG?

:hug:

I have been doing one new thing these last two weeks that could be causing this, but I really doubt it. I have been trying to get a small amount of sunshine. I decided that the benefits outweigh any risks for me.

Ah-ha!!! Good ole Vitamin D!!!

No meds for mg
 

I had enough with the side effects

Desert,

Sometimes I get palpitations, not really pains, but feelings like I'm falling, or suddenly going down the high sloped drop on a roller coaster when I have mestinon time-release, so I'm pretty sure that I'm having overdose sx (that one is released into the blood-stream at unpredictable, differing levels, so sometimes you can get too much). I get blurry vision, sweating, twitching, and so on. It makes me very nervous (like I'm going to have a heart attack), so I get really physically tense too...Unfortunately, my muscles work very well when this happens at times, so it sucks that overdosing is what I need to make my muscles work...lol:(

But anyway, I really have this gut feeling that you might be getting better and therefore might be overdosing on the mestinon. I'm curious what your doctor will find tomorrow. I hope that this is the reason, and I wish you lots of luck in your appointment. :)

:hug:
Nicky

Nicky,

These are generally my overdose symptoms too...but I have noticed that they vary a lot. Thanks for thinking of me. My appointment is on Thursday with my neuro.

Update
 

This has been a strange and new experience for me, I suppose MG will always surprise us with some new thing.

I have something like bronchitus, I didn't go to the doctor since it wasn't that bad. I didn't even know what it was until I lowered my Mestinon dosage. When I lowered my Mestinon dosage I started coughing up mucus (yuck). I don't even have a runny nose or sore throat, but I did get a low fever that came and went.

When I took my regular Mestinon amount, my chest got so tight it was hard to breath so I really thought it was a Mestinon overdose at first.

Now that I am feeling mostly better...still trying to cough this stuff out...and my need for the previous dose of Mestinon has returned, the funny thing is...I don't have double vision at all! No more trouble eating or drooping face! I don't know what happened.

This week, when I get weakness, it is only in my arms and legs and nothing like it was before, only a weak feeling that doesn't stop me from doing most things.

Maybe it is the sunshine so I am sticking to this new routine of about 30-60 minutes of sunshine twice a week.

And you would think I would be happy, but I have sunk into some depression that I can't get out of...its terrible...I feel like the world is over...and I know it isn't true, but I feel so sad. I actually feel like something is causing me to feel this way because I can think logically of so many reasons for not feeling bad....I spend about 6 hours in bed crying this morning knowing I felt good enough to do some of the things I have been wanting to do since I got MG, and I didn't want to do any of the things I liked. What is wrong with me? Something is not quite right and I don't know what it is.

I am still sick with whatever I have so I do need to take it easy.

I hope everyone the best:hug:

mestinon - too much?
 

Desert,
I wish I had some words of wisdom that would make you feel better but I don't. Just know that you are in my thoughts and prayers. I can tell you that I understand how you feel. This disease is so incredibly depressing in itself but when you get sick on top of it it can be overwhelming. When I got sick at New Years I remember crying alot too. I felt like if this was the best life was going to be for me why do I keep fighting. Once I got better my depression got better also. However I did make some decisions to change parts of my life. I have applied for disability and have forced myself to slow down. I am scared I will get denied on the disability but I am giving it a shot. I just can't work like I used to and I finally had to face that realization as difficult as it was. Try to rest and take care of yourself and hopefully once you kick the bronchitis you will start feeling better again. If you don't feel better soon you probably ought to call your Dr to see if he thinks you need an antibiotic. I have found it is so much harder to recover from things with the MG. :hug:
Kendra

Hi Susan,

I hope you start feeling better soon. If not, I agree you should see your doctor, you may need an antibiotic. This disease is always full of surprises and sometimes it can be a little more than we can handle. I couldn't possible tell you how many times over the past 11 years, I've gone into a mild depression, had a good cry and pulled myself back out of it. A good cry can often do wonders!;) I hope this is the case with you too. It seems just when you think you have your meds just right, something messes it up, but it will get better. Just be sure you're not fighting an infection. Thanks for sharing and I'll be keeping good thoughts. Feel better and keep us posted.;)

Hugs,
Pat

Kendra,

Thank you for the reminder about disability. I guess I need to apply even though my doctor said my MG isn't bad enough for me to get it. He isn't here with me every day to see how much I have to rest just to be the "normal" person he thinks I can be.
I keep asking myself "what kind of job can I do with MG?" and trying to figure out a new career for myself and I just can't think of anything that works. What company wants to take a chance on a new employee knowing (or else I hide the fact and I know) that I have to take random days off work to rest?
How is the easiest way to apply for disability? My mom suggested finding an attorney who does this for a living, she said that they take a percentage of the first check and don't charge if you don't get disability. I have such limited energy that this may be the best thing. Did you apply for yourself? I am wondering how much work it will be if I do it myself...I see that you can apply online.

Thanks for thinking of me.

Thanks Pat for the good thoughts.

I don't like being depressed...I am having a hard time with motivation to do anything.

And about antibiotics...I do everything possible to avoid them. I often am allergic to antibiotics and have a list that I can't use. So scary to have an allergic reaction, but of course I will go to the doctor if necessary. Herbal teas and relaxation seem to be making this one better, but it is not gone yet.

I think I figured out why I am so depressed. I am a person who sets goals in my life and MG just made a mess of all my goals in life. I am a person now without any direction, I don't know where I am going and I don't know how to get anywhere at the moment with a goal...so I feel lost without something to work towards. I think of all the things I want to do and know I could do some of them...but I have to solve this financial mess that MG has put me in first. So, I suppose, that is my first goal even though I can't figure out how to make it better.

:hug:

don't know if this will help, but...

before I became ill, I knew exactly where I was heading. I was considered a very bright and promising young physician. everyone (including myself) knew that I was going to be the head of the dept. sooner or later. within 2 years of being an attending physician, I was promoted as the head of a small unit...

even after my first hospitalization, in the ICU, I knew for sure that I was going to recover in no time and go back to everything just like before. hadn't I been able to cure patients who were much more seriously illl? only after my ( probably fifth or more hospitalization) did I start to understand that
all this had to be changed, as obviously, someone who can't even pick up a patient's chart and walk a few meters without assistance can't attain such goals. and this was very hard... (to say the least).

a good friend of mine, said to me-look, before becoming ill, you life was unidemensional. you were walking straight on one line, from A to B. now, your life has become 3 or even 4 dimensional (if you take into account how it changes the way you see time), and you should just find the way to walk in those convoluted paths, that may eventually be very rewarding.

so, I gradually had to set new goals, that had to be realistic and changing. sometimes it would be just finding the way to be able to get out of bed and walk to the other room, without collapsing. other times, to present my work in an international conference, despite having to use all this "equipment".

I started writing plans for each week- one, assuming that I am going to be relatively well, and another assuming that I am going to be pretty much bed-ridden. so I was pretty much prepared for both options.

and I also "allowed" myself times of fear and despair, and times when I just want to be left alone. and times of mourning my "old self", and incorporated everything together.

and I gradually found a network of people (friends, colleagues, family, and physicians) who could be there when I really need them. making sure that I never burden the same person too much. and also developed my own philosophical approach to it all. and found in myself new skills that I never thought I had before.

this took a very long time, and I think I am still in the process of doing it better. probably, it is never going to end...

alice

Desert Flower,

I applied for disability even before I had a diagnosis and I applied online. I wrote in detail how many feet I could walk and then get short of breath and how I could not lift my arms only so much without tiring and how even talking made me short of breath. I got my first check exactly 5 months after applying. It certainly is worth a try and then if you get turned down, get a lawyer. However, if you have a diagnosis of MG you will more than likely get approved. Also, fully explain that your symptoms wax and wane and you never know how you are going to be. Good Luck