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Old 12-17-2009, 10:53 PM #1
Kasper1014 Kasper1014 is offline
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Default prisms and Mestinon

Before I was diagnosed with MG...my opthamologist prescribed me temporary prisms to wear. Then I was referred to my neurologist who diagnosed me with MG and started me on Mestinon.

i was also told to wear my prism until possibly the meds help my eyes....more of a wait and see attitude.

Is anyone else here wearing prisms or have worn prisms?

Did the Mestinon help your eyes and the double vision?

How did you know that the Mestinon is really helping? How did you feel? Was it an obvious feeling?

Right now I am taking mestinon 60mgs three times a day.

When I take my Mestinon, I don't notice and obvious feel great feeling. I notice that I don't feel exhausted, still tired....but not exhausted. And that lump in my throat feeling is gone.

But when the Mestinon wears off....boy can I tell. My throat feels clogged again, arms feel heavy and I feel exhausted!

I am just trying to see what is normal!

And just since I am here....I have noticed that everyone...family and co-workers.... seem to think that now that I am on meds....I should be doing fine. And that is annoying! If anything...when the meds wear off....I feel even WORSE! Plus wearing the prism is not exactly the greatest fashion statement!

Thanks so much for your help and just listening!
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DesertFlower (12-19-2009)

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Old 12-18-2009, 12:35 AM #2
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Default Mestinon 90mg reduced to 15mg every 24hrs by self

Result no eye flickering no muscle twitch feel no better but no worse.
Main steroid pred
60mg per day
only started to work ok after 6 weeks .
New infection every week
most recent changes formation of catareks on my eyes
long distance sight worsened by 100%
new prescription needed
cannot find it at the moment had to agree with optician new price for second pair.
I believe i am well overdose on steroid do much so that mestinon has now no real use .
Hence my thread below.
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Old 12-18-2009, 12:00 PM #3
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Mestinon DID help with my double vision but it took 5 months on Mestinon before the double vision went away.

I know Mestinon helps me for so many reasons. Mostly just because I can acually function with Mestinon. I can feel when the Mestinon wears off. I suppose I really can't feel the good effects since the Mestinon makes me feel (almost) normal. There definitely is not an obvious good feeling from Mestinon, but only the lack of bad feelings.

I too hate this expectation that, since I have medication, I should act and function normally. So far from the truth! My whole life revolves around taking Mestinon at the perfect times or everything falls apart. I am very sensitive to the timing of the Mestinon, even 30 minutes early or late on a dosage and I get double vision and weakness. And I have to take everything slowly and calmly-stress makes my world come to a standstill!

I have not tried a prism for double vision.

A 60 mg dose of Mestinon gives me double vision, so now I take 30 mg at a time and my double vision is mostly gone. This is wonderful!
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Old 12-18-2009, 03:04 PM #4
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Default

I guess my Mestinon is working. I do feel more normal when the med is in effect. And i can really tell when my med is wearing off. So I guess I am on the right track and just to really be patient.....darn! LOL

I am trying so hard to keep a positive attitude....but sometimes it is hard. I do have the support of coworkers and my family. My boss is willing to work with me to keep my stress level at a minimum.

But then sometimes I hear...you ARE on meds, shouldn't you be better??? Ugh! If only it DID work like that!

I see my Neuro Dr. Jan 6th. I am going to see about taking my Mestinon every 4 hours. : )
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Old 12-18-2009, 10:54 PM #5
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Default Can you try the mestinon closer together?

Mestinon takes about 20-25 minutes to get into your system, works for 2-2 1/2 hours and then is gone.

When I was taking 120 mg every 4 hours I had about 1 1/2 hours when I felt horrible. With my neuro's help, I changed to 60 every 2 hours and I have sustained help without the ups and downs. It might be worth discussing - maybe doing 30 mg every 2 hours instead of 60 every 4. The total dosage would be the same, but it might work more evenly.
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Old 12-19-2009, 05:31 PM #6
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Quote:
Originally Posted by Juanitad View Post
Mestinon takes about 20-25 minutes to get into your system, works for 2-2 1/2 hours and then is gone.

When I was taking 120 mg every 4 hours I had about 1 1/2 hours when I felt horrible. With my neuro's help, I changed to 60 every 2 hours and I have sustained help without the ups and downs. It might be worth discussing - maybe doing 30 mg every 2 hours instead of 60 every 4. The total dosage would be the same, but it might work more evenly.
I find it interesting the way Mestinon works for everyone a little differently.

For me it takes about 20 minutes to start working and then it works well for about 4 hours and then for the next 2 hours it is still in my system and helps some but not as much as it did for the first four hours.

I was so glad when my doctor told me I could take the Mestinon on any schedule as long as my total amount for the day was between 60 and 120 mg. He also said to keep the same schedule once I figured out what worked best for me, that a regular dosage was best.

I feel best when I take 30 mg of Mestinon every 4 hours.
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