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rockenmamaof5

Anyone Here Taking Mestinon (Pyridostigmine ) For Their Orthostatic Hypotension?

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I've been on it since Feb of this year for Myasthenia Gravis. I had a tilt table test on Friday which I failed. I didn't pass out ,which I didn't expect since I never do, I just feel so horrible. I was diagnosed with orthostatic hypotension. My neurologist upped my dosage of Mestinon and within a couple weeks I started feeling MUCH better (didn't feel like my body was ready to explode and shut down). I had read a little and saw that one of the side effects of Mestinon for people who have problems with orthostatic hypotension is that it helps raise the blood pressure. I'm wondering if that's what's kept me from passing out. Anyway just thought I'd ask to see if my thoughts are valid

Thanks,

​Pam

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Hi, Pam! I'm sorry I can't elaborate on the Mestinon unfortunately as it wasn't recommended in my case because it's contraindicated in those with seizures, which is a bummer because I wanted to really try it for the thermoregulation control I've read/heard it helps. Do you have any issues with that at all?

I wanted to welcome you to the forum, Glad that you are here!

Sarah

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Hi Pam, welcome to DINET! I'm on mestinon and know of others who have succes with it re hypotension. For me it works on temperature which is such a blessing!

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Sorry to hear about you having seizures:( I have MAJOR problems with thermoregulation. It's not as bad as it has been but my "thermostat" is still broken. The biggest problem I have is I can't deal with extreme heat OR cold. My body totally freaks out and things get bad.

Thanks for the welcome Sarah!

Hi, Pam! I'm sorry I can't elaborate on the Mestinon unfortunately as it wasn't recommended in my case because it's contraindicated in those with seizures, which is a bummer because I wanted to really try it for the thermoregulation control I've read/heard it helps. Do you have any issues with that at all?

I wanted to welcome you to the forum, Glad that you are here!

Sarah

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Hi Pam, welcome to DINET! I'm on mestinon and know of others who have succes with it re hypotension. For me it works on temperature which is such a blessing!

Thanks for the welcome Corina! I'm glad it's helping you with the temperature issue! It helps me a bit but not as much as I'd like. My daughter plays tournament softball and I'd really really like to be able to watch her without having to bring layers of clothes as well as take the chance that I may end up back in the hospital or at best have to deal with being couch bound to recover for days.

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I was on it for a few months, but struggled with side effects too much to really see a different in my situation.

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Pam,

Heat is the worst for me. I cant tolerate it at all.. I really am fortunate that we have all 4 seasons here in NY! Has the mestinon been a big help to you with keeping your blood pressure regulated?

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I've been taking Mestinon for years now for orthostatic issues--it has made a huge difference in my case. I have noticed some side effects (nose runs almost constantly and my eyes tear easily) but I can live with that small inconvenience. I still have much more trouble functioning in extreme heat or cold, but I've gradually gotten so much of life back. I tried weaning off of the Mestinon a couple summers ago to see if I still needed it…I did! It was not a pretty situation and took a little while to get back on a more even keel.

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Pam,

Heat is the worst for me. I cant tolerate it at all.. I really am fortunate that we have all 4 seasons here in NY! Has the mestinon been a big help to you with keeping your blood pressure regulated?

You're not too far from me (PA) This will be my first summer with things full blown. I've had issue's for years but not like things are now.

I'd have to say Mestinon is definetly helping! Things got so bad I thought my body was going to explode just a few short weeks ago. The day I was hospitalized my Neuro added another 60MG each day. I spent almost a week in the hospital. Had 2 stress tests (tried to do treadmill one but blood pressure was a huge problem so they stopped it and I ended up having a chemical one done) Anyway now my head, chest and stomach don't feel like they are going to explode so not only is it helping my blood pressure it's helping the gastroparesis. During the tilt table test I was still very symptomatic but I didn't pass out. So it's keeping my blood pressure from dropping too much but it's no cure.

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I've been taking Mestinon for years now for orthostatic issues--it has made a huge difference in my case. I have noticed some side effects (nose runs almost constantly and my eyes tear easily) but I can live with that small inconvenience. I still have much more trouble functioning in extreme heat or cold, but I've gradually gotten so much of life back. I tried weaning off of the Mestinon a couple summers ago to see if I still needed it…I did! It was not a pretty situation and took a little while to get back on a more even keel.

If it's helping keep taking it! Glad it's helping!

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I just started taking Mestinon this week, after being on Florinef for a few years. My immune system was too weak to stay on a steroid medication so I'm giving this a shot. Glad to hear it's working for you! I'm keeping an eye out to see how I feel. So far I'm not on the full 60 mg dose yet but working my way up while I'm trying to taper off the Florinef.

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