DesertFlower,
I totally knowwhat you mean about the shaking not being visibe. It feels like it should. I told my Dr. that I feel like I should be physically trembling but you can't see it always. I am anxious to hear if you find a steady dose that seems to work for you. I like the idea of writing down times and results so you can lok back. I think I will try that too. One other symptom I have been having alot is when i feel dizzy my eyes feel like they are shaking too. I feel so dizzy sometimes that I have to sit down for fear of passing out. It is very scary when it happens.

Yeah I guess we have to laugh about the meds or we would drive ourselves crazy for sure!!! I hate to think it is the Mestinon but am starting to think it has to be. I hope for you it is so you don't have to battle your PTSD on top of everything else. I know I have mentioned before that my 16 year old son was in a 4 wheeler accident 2 years ago. He was going up a hill and it fell back on his face and broke every bone except his chin. He has had 3 reconstructive surgeries and was left with nightmares and PTSD also. It is so hard to watch! Luckily with the help of several professionals we have got it under control. It has been a long 2 years but when I look back at where we started we are so very fortunate.
Take care,
Kendra

Kendra,
My eyes feel like they are shaking sometimes too, such a strange feeling. They shake after taking Mestinon and also when I am getting weak and need Mestinon. It is so complicated. We do have similarities. I hope your son is doing well. PTSD is not fun and I do not wish it on anyone. I remember so many days of going to do something simple like grocery shopping and realizing that I was terrified, heart pounding, tense muscles, heavy breathing, etc. It took a lot of work to re-train my brain to know that these activities are not dangerous. I hope it is the Mestinon causing my recent nervousness. I talked to my MG doctor about it and he said to go back to my therapist.

I want to clarify something for others reading this. I am adjusting my dosage per my doctor. He suggested that I try taking Mestinon at different times of the day and also to try 1/2 pills intead of whole pills but with keeping the total mg per day the same as I have been taking(90 to 120 mg per day total). Always talk to your doctor before changing your dosage since your doctor may have a reason for a specific schedule.

Here is my "broken record" -- I feel the weakness and shakiness, too -- and I DRINK more. It stops almost right away!! Overdosing for ME means that I have hot flashes and diarrhea -- so I KNOW that my weakness and shaking is NOT from overdose -- I can only guess it is something akin to dehydration. All I know for sure is this --- as long as I drink a LOT, I do NOT have this problem. I am a frequent bathroom visitor (urination) -- small price to pay for being able to swallow.

I take one pill every 2 to 4 hours during the day -- and one AT bedtime. I have NO problem with Mestinon keeping me awake. I do NOT take Timespan or any other Mestinon during the night. I take one AS SOON as I get up in the morning. I usually put the pills under my tongue and let them dissolve. (Forgive me if any of this is a "repeat" -- I tend to get "lost" in forum threads.)

Hi Patrick here.
When i take my morning dose it takes at least four pints of water to get the steroids in the system as my spleen kidneys or whatever it is cries blue murder with sharp pains on my left side .
I then continue to drink a pint an hour all day.
It is the only thing that helps.

I

Kendra,
I have had great results from taking only 30 mg of Mestinon 3 times per day every 4 hours (and a 4th pill about every 4th day). No more shaking, no more dizziness, and rarely any nervousness. This is great! This is after 8 days of the smaller dosage and I feel all of the same positive effects from Mestinon. Now I don't feel crazy. And best of all, I have had no double vision for one week! This is the first time since I got MG that I have not had double vision occasionally during the day, or slightly all day (every day is different). I am wondering if 60 mg of Mestinon actually made my eyes shake giving me this double vision. I can see again!!!

This is a reminder for me that I am so sensitive to medicine and always need a smaller dose than what is recommended.

One other thing that greatly effects my MG is my hormone level. I noticed that for about 3-5 days before I start my period that I get extra weak and probably need more Mestinon during those days. I have never had any kind of "female" troubles and it is frustrating to feel so exhausted due to MG for those days. Does anyone else notice this? Do you take extra Mestinon? For me, I basically collapse in bed to rest after each activity. Any activity makes my heart race during these days and I get tired quickly. It seems that the Mestinon helps for about 2 1/2 hrs instead of 4 hrs as usual...I am wondering if I should take Mestinon every 2 1/2 to 3 hrs during this time.

Keeping records of when I take my medicine and how I felt has been helpful. I recommend it, especially if you are changing your dosage or starting a new medicine.

Thanks to everyone adding their Mestinon experiences to this thread, the information has been so helpful to me.

Desertflower,
That is great!!! I am so glad to hear you have figured out a dose that works for you and not having to deal with the double vision is wonderful!!! I am so happy for you.

I want to thank you for the idea of keeping a log of times and side effects from the Mestinon. I have been doing that and it really has helped!!!

Yes I have noticed that my MG is worse when my hormone levels change. My worst days are a few days before I start my period too. I am still playing around with my dose so I don't know if taking Mestinon more frequently on those days would help but it is certainly worth a shot. Thanks so much for the update!!!
Kendra