dapy

I am in a trial for it through the Mayo right now. I started last Dec. I think it has helped but I've lost 7-10 lbs. that I didn't really have to loose on it. The stomach thing was a killer until I figured out that I had to eat before taking it. I used to take it with a meal but seems I need to get the food in my stomach first and then I'm o.k.

I think it is suppose to help things to constrict and therefore help with the pooling in the legs/stomach.

JJH

I'm glad your feeling a little better. It sounds like the somach problems were pretty serious for you to lose that much weight. Thanks for the info.

Make sure you eat something before you take it, as it can make you sick to your stomach. As far as what it actually does, I'm not really sure, but I do know that it's helped my POTS symptoms immensely. Also, it's supposed to help without necessarily raising blood pressure.

Meg

Thanks Meg, I'm so glad you have had a good result, and thanks for the heads up on the eating before taking the mestinon. Hopefully I will have the same improvement as you.

Hi Everyone,

I was given a prescription for Mestinon. Have any of you tried it? If so what exactly is it suppose to do, and what side effects happen when taking the pill?

Hope everyone is doing well today.

Dapy

Hi,

I have been a patient of Dr. Grubbs for a few years. Beverly, is a nurse practitioner who has worked with Dr. Grubb for approximately a year. Before that she worked in the diabetic department. Although, I find Beverly pleasant and informed, we all have to realize that she is not Dr. Grubb. Beverly is used to lighten Dr. Grubbs work load. If you have not seen Grubb before, than you should certainly make an appointment with him. Dr. Grubb uses Beverly to handle many of his follow up appointments.

We all need to be aware, no matter how nice Beverly is, there is a world of difference in the education of Dr. Grubb, who is a brilliant and caring cardiologist/electrophysiologist, and Beverly who is a pleasant and educated nurse practitioner.

Also, be aware that if you have any thoughts of seeing Dr. Grubb, that you should call now. He is always booked 6+ months in advance.

Good luck.

Hi,

Has anyone been given a script of SSRI's, such as, cymbalta, lexapro, paxil, etc.? Do they do any good? Are there many side effects?

Peg,

i have been passing out (about 350+) for the past 2 years. at first they put me on beta-blockers for chronic migraines but the results of the beta-blockers put me bedridden for 2 months, needing help to do everything, even go to the bathroom! so i was taken off of those and put on midodrine. well midodrine caused me insomnia, a high feeling, and more fainting. so then he haded florinef- not any better. and he tried me on mestinon- but i was very allergic. i found relief in neurotin for the migraines but it lost its juice so to speak. now i don't take anything, but as of today i am starting a new diet in hopes of that helping me out. i will let you know the results as time passes. i'm sorry that i am not much help but i just wanted to let you know that you are not alone and feel free to ask any question you want on this forum. even if you think something is "crazy", you still won't be alone so go ahead and ask. you might even get some good advice. hope you start feeling better and i wish only good days on you.

dionna

Oh my gosh, you think you have it bad to you listen to someone else. Have you had a monitor put in to watch your heart to make sure you wouldn't benefit from a pacemaker? Good Luck, let me know how the diet helps.

Hi,

This is my first post, and I am hoping for a lot of helpful feedback. I have been feeling awful for approximately five years. I got diagnosed with neurocardiogenic syncope and pots. I started passing out every two to three months, at which time, the doctor put in a loop recorder to see what was happening. The recorder caught the heartrate going down to 30bpm for three minutes. I needed a pacemaker and have since had one put in. Although, I do not pass out any longer, I still have life altering symptoms. My heart races with any activity (140's), I have excessive fatigue that is not made better with rest, I am lightheaded all the time, heat intolerant, weak and moody.

My question is this. Is there one medication that seems to help more than another. It seems like I have been given every medication available, but I do not tolerate medications well. What does everyone think of the SSRI's, midodrine, provigil, etc.? My quality of life on a scale of 1-10 is probably about a 2-3and I need to pick a medication and try to stick with it. I need advice. I need to hear your experiences. I feel like I am getting worse, and there is no hope in sight.

Please let me know what has worked for all of you.

Anxiously waiting for your help. Thanks

Peg