Geez, I know I'm out of it when I don't even see a fabulous poem. That was beautiful, Alice. My family kids me that I "poop poems" but they are not eloquent like yours and are often full of humor or sarcasm.

Annie

Thanks Annie,

and I would really love to read one of them.

alice

patrick here,
after all the help here so far I moved my mestinon from every eight hours when I left the hospital two weeks this Friday to every four hours even during the night.
As I have mentioned on another tread the move was brought on by a very bad throat infection.
I had a breathing crisis last Friday night.
I had not yet set my watch alarm for every four hours.
Because I was interested in a movie on tv and had my laptap on my knee I missed my timefor taking dose.
I decided to go to bed and as I went to leave the computer down, my chest felt like someone was standing on it and my throat was closing.
Luckily I had the mestinon beside me and a drink of water.
After 20 minutes breathing started to improve and after an hour fully recovered.
Decision taken mestinon is needed to breathe,my life not the consultants.
Ever since apart from one incident ,when I forgot again,breaathing is normal,no wheezing and no feet on my chest.
My concentration on my dose at the moment is on breathing .
I am on sick leave from a government call centre.
I work there as a clerical officer chasing absent fathers and mothers for child maintenance.

Patrick here a newbie ,
I am very sorry you experienced sucha terrible day.
What do you take besides mestinon to reduce the amount of antibodies your system is sending out to attack your sodium ions
I am currently using 60mg daily of predmsdlone.

Hey Patrick,

Welcome to the site!

I take 60 mgs of prednisone as well...I also have plasma exchanges every now and then...I used to have them every month and a half or so, but I'm trying to reduce it because I was passing out during them...

How is the prednisone working for you?

Ttys!
Nicky

Thanks Nick,
I am only in my first month after diagnosis so I believe it is too early to know.
First outpatient appointment with consultant is 7th dec.
thanks to you guys I now have my breathing under control,not identified as mg by the consultant.
He had referred me to cardio for that ,not being his area.
I had presented with heavy chest pressure at A&E.
They did ECG which was ok but my oxygen level was low .
My own General Practitioner pretty already had confirmed mg by blood tests.
When they heard this they kept me in until I saw the medical consultant on Monday.
He carried out physical tests for mg at the bedside and referred me to neuro.
When I saw neuro consultant next day he started me on mestinon and first level 10mg prednisone plus all the other meds listed on my personal posting which I am using as a log of my disorder.
Thanks once again for your welcome.

sorry nicky I have been reading your storyfrom your posts history and finding the progression of each person's case helpful in understanding more about what has happened so far with me.

Lizzie - I would love to hear the all the details for what everyone experiences with mestinon.

I take 1 1/2 to 2 of the 60 mg pills every day.

Without Mestinon I would be stuck in bed almost all the time not able to read or even roll over. Mestinon is my life saver!

I have noticed that when I take my morning 60 mg pill, I have to relax for about 1 hour since sometimes it makes me dizzy or shaky like I drank too much coffee (did someone else say that Mestinon makes them feel like this?) After talking to my doctor, he said to spread the dosage out more during the day, the only thing he stressed was to take the SAME amount every day.

Today I am cutting all my pills in half and taking 30 mg every 4 hours during the day (I don't need Mestinon at night). This morning went great, no dizziness or shaking and otherwise I feel like I took the whole pill. Taking my next 1/2 pill now since I am starting to feel week (exactly 4 hours since first pill).

I have always been sensitive to medicines and need less than the average person so I think this smaller dose will feel better for me.

Also, if I take 2 pills every day then on or before day 5 I get twitchy muscles and I have to stop. 2 pills daily is too much for me so I only take 2 pills on my weak days and no more than twice per week.

Water is important for me to drink with Mestinon. If I don't drink plenty water I get stomache cramps and painful diarea and also stiff hands due to dehydration. Yesterday I didn't drink enough water and I have been regretting it terribly (staying near bathroom today and yesterday afternoon). Mestinon usually doesn't give me diarea (Note to self - drink extra water today and every day!)

I am still working out the best times to take Mestinon.

I found out that pills taken in the evening will keep me awake for about 4 hours afterward. When I first started taking Mestinon I took one in the morning and one in the evening 12 hours apart (6 am and 6 pm) and I couldn't sleep until 10 or 11 pm. After about 1 week I got the overdose symptoms of twitching, tight muscles and muscle cramps (scary!) and had to decrease my dose. It was such a relief to be able to relax and sleep after that experience. I almost did not want to take Mestinon anymore.

I feel like I am just rambling. I suppose I am just sharing any experience I can think of concerning Mestinon. I hope it is helpful to someone.

I hope everyone is feeling good today.

Desertflower,
I have exactly the same symptoms in the morning!!! The shaking and dizziness is scary!!! Do you also feel nervous and anxious like you are in overdrive? I really thought these symptoms were related to the antibiotic I was on but i have been off of it for 3 days and still feel this way every morning. I had a CBC done yesterday and know if everything there comes back fine it HAS to be the Mestinon. I think I am like you and do better with less and don't seem to need it at night. I take my first dose late morning but by 2:00 I can definitely tell I need my second dose. I start getting very weak feeling.

I am going to work on drinking more water. I think that may be part of my problem. Maybe that will help with some of the shakiness and dizziness. Thanks for the tip!!!
Kendra

Kendra,
This is interesting. I do feel nervous like you described. I thought it was my PSTD (post traumatic stress disorder) acting up again even though I had it under control. I am pretty sure the shaking (not always visible) and dizziness is from the Mestinon since I am not taking any other medicines and the timing makes sense (it starts about 20 minutes after taking 60 mg of Mestinon and stops after 1 hr or so).

This morning I took 1/2 pill with no shaky/dizzy/nervousness and 4 hours after I took another 1/2 and I did feel a little shaky/dizzy and nervous too, but not as much as usual with the whole pill. Maybe I need to go a little longer between half doses. Now I am relaxing today since I don't feel so great and that may make me need a little less Mestinon. This is my first day with the 1/2 pill thing so I will continue it and let you know how I am doing sometime in about 1 week. It is hard to judge the effects of medicine with 1 day only. I am writing down the results of my 1/2 pill experiment until I find a dosage and timing that works best.

I don't like this shaky/dizzy feeling or the nervousness that I see now may be the Mestinon as well. But I will live with it if that is what it takes since it is better than being bedridden.

I will pay attention to the timing of the nervousness since I am not sure when it happens only that I have been feeling nervous since I started Mestinon. I though it was just the added stresses that go along with MG making me get PTSD again.

Water helps I am sure of that...going to get more water right now. The shakiness and dizziness I think can be caused by dehydration and not enough water to the kidneys.

Something as simple as taking a pill can become so complicated, it actually makes me laugh.

Thank you