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Mestinon


danelle
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I saw my dr. today and we have two meds left to try-mestinon and adderal. He wants me to try the mestinon first. He says dr. Grubb told him if it is going to work, it wll work almost immediately or just do nothing at all.

Questions:

1. has anyone tried mestinon and what was your experience?

2. both my gp(who is familiar withPOTS-yeah) and my regular cardio are very reluctant for me to try adderal because of my heart rate and rythms but it is my last resort if the mestinon doesn't work. anyone tried this and what happened?

thanks ;)

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Hi...I have not tried the Mestinon..but Dr. Grubb put me on the Adderall XR. I was also concerned about the heart rate because I had scary episodes of tachycardia but the Adderall XR stopped the tachycardia. In my case, it acted as a vascular constrictor which allowd my veins to be able to pump the blood back up tp the upper part of my body...therefore the heart quit getting the message to keep pumping and pumping harder in order to get the blood circulating. So, I have few episodes of tachycardia...I have some when I lie down to go to sleep but they subside. I have been on it for about 9 months and it has greatly improved the quality of my life.

I am interested in the Mestinon...will look it up. Good luck. You are in the hands of a great doctor!

Lorrell

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Hi Danelle,

My daughter was prescribed Mestinon by Dr. Grubb, this did not work for her. She did not have any adverse side effects but she did not notice any improvement in her symptoms. Mestinon as I understand is supposed to stablize b.p., (she still had incredible swings) and to increase gut motility, nothing happened in that department either.

My daugher has also been on Ritalin and Concerta for fatigue and brain fog, these are in the same drug class as Adderall, Ritalin made her too "jumpy" then a big crash and Concerta didn't do anything. Dr. Grubb did prescribe Provigil for fatigue and brain fog, she loves this drug. She takes 100 mg twice a day, she is able to make it through school without sleeping and her concentration is much better.

We really enjoyed our visit with Dr. Grubb, I think he is quite a gentleman and a scholar, we were impressed.

Angie

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Thank for your responses. :D I have heard others say the same thing about the adderal. I don't know if i will get the courage to try it out or not though, just because of such bad experiences with meds. I guess I am going to try the mestinon tonight and see what happens. The dr told me that it will work for about 10% of POTS pts so who knows.

I appreciate you all here and I am sorry I have neglected to respond to some of your posts lately. Just been in the dumps.

thanks bunches ;)

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