ginger Posted October 16, 2004 Report Share Posted October 16, 2004 Hi all-- I came on as a newbie not too long ago, but haven't posted in awhile. Pretty rough the past 6 weeks with worse/new symptoms. So trying to get back in habit of this forum. Anyway... I came across this article on the Mayo website:"Mayo Clinic Finds Effective Remedy for Blood Pressure Drop When Standing Up"http://www.mayoclinic.org/news2004-rst/2451.htmlThe article discusses the use of the drug pyridostigmine. Thought it was interesting. Research done largely by Dr. Phillip Low at Mayo.A side question. Have any of you been to the Mayo Autonomic Lab/Neurology Dept in Rochester, MN? How was the experience?ginger Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 16, 2004 Report Share Posted October 16, 2004 Hi ginger. Thanks for the article. I'd like to hear from some of "our" people what they experienced on mestinon/ pyridostigmine. I always have hope.I did a full and extensive ANS work-up at Mayo in MN in Feb of 2003. It was very worthwhile and I learned alot more about my type of dysautonomia. My neurologist was Dr. Fealy. He was very helpful to me while I was there. He developed a non-medicine treatment plan to treat my pots. Once you get back home you'll need someone else to follow up with. They want me to return in Feb of 2005 to track how I've been "progressing". I'm not looking forward to going back because (1), I don't want to know and (2), it is physically tiring. I still have time before dealing with that. Anyway, are you thinking about doing an ANS work-up? The most difficult test for me was the thermoregulatory sweat test...the one where they powder you up and put you in a sweat box for a time. That turned out to be the most important one for me though too...it clearly showed denervation in my lower extremities. So, if you want to know if I would recommend Mayo, MN...most certainly. Take care, tearose Quote Link to comment Share on other sites More sharing options...
DancingLight Posted October 16, 2004 Report Share Posted October 16, 2004 so far i the experiences of folks who have tried mestinon seem to be pretty mixed from what i have read here and on ndrf....hmmmm.....i haven't tried it...it was recommended to me by one POTS doc and not the other....so....that's that scoop from me!emily Quote Link to comment Share on other sites More sharing options...
yogini Posted October 16, 2004 Report Share Posted October 16, 2004 Ginger,I just went to Mayo a couple of weeks ago. I would also highly recommend it. They are very throrough. They also have tons of experience in dealing with POTS patients, so they are able to explain things in a way that my other doctors aren't able. By chance, I actually got to meet with Dr. Low! I was totally thrilled, because he really took time to examine me and explain things to me and also said that I will be much better in 6-12 mos. (I'll believe that when I see it) He recommended that I try Mestinon, but I haven't made up my mind about it because of what I read on this forum and on the ndrf forum. And right now I am having enough troubles with my current meds, so I don't want to add a new problem to the mix.My sweat test was a little different than tearose's. They just attached some capsules on my arms and legs and measured the sweat by passing an electrical current through the capsules. It was really painful, but the pain only lasted 5 mins or so. The one warning I have is that it is extremely difficult to get an appointment at Mayo. Low told me that he is unable to see 80% of the patients who want to come there. They initially rejected me when my Dr. referred me, and I was only able to get in because my colleague's father is a doctor there.Good luck! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted October 17, 2004 Report Share Posted October 17, 2004 I went there in the fall of 2000. I even had Dr. Low. He was great to work with. He even came and saw mein the hospital after the drug induced stress started a bad rhythme.I would be more than willing to try it. My cardio had suggested that the proamatine/midodrine was causing some of my chest pain. Mabey I'll call him to see what he says.Thanks for the info.Blackwolf Quote Link to comment Share on other sites More sharing options...
ginger Posted October 17, 2004 Author Report Share Posted October 17, 2004 Thanks for the comments all!My neuro at Cleveland Clinic referred my to Dr. Low 2 weeks ago, but he was out of town, so hope to hear something this week. I am concerend about not getting in up there. They are very busy!I'm also needing additional investigation/treatment for spinal injury from last January, so I have two things going on that need to be addressed. Cleveland found the POTS in August. But the nerve damage from my spinal injury has time limits for repair. I've already passed into "chronic," but after a year, chances of repair and regeneration go down significantly.This has been such a long and frustrating year. Waiting is the worst!!!! So, here I am waiting again. My family and I have considered just driving up--it's only 6 hours from me--and waiting or checking me into the ER. I hate to do that... I want to follow protocol, but I've just had it. And my symptoms keep evolving, adding on. So, please pray for me to get there soon. Ginger Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 18, 2004 Report Share Posted October 18, 2004 I haven't been to the Mayo clinic but was prescribed the Mestinon by Dr. Grubb. I filled my prescription last month after waiting a week because that's how long it took the pharmacy to get it after they ordered it. I still haven't had the courage to start taking the medication. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 18, 2004 Report Share Posted October 18, 2004 Briarrose,Please let us know how it goes with the medication. Thanks! Quote Link to comment Share on other sites More sharing options...
ginger Posted October 19, 2004 Author Report Share Posted October 19, 2004 Briarrose-- I chuckled at your response. My urologist gave me a new drug to try (instead of Ditropan XL) called Santura. I believe its tri-something chloride. He said it should not be an issue with the tachy, but in fine print, in some studies, there was noted increase in HR. I had to get off of two other urinary drugs from interactions with POTS/OH (FloMax for flow and Impramine for severe spasms). So, like you, I've let the sample boxes and Rx sit on my shelf...and still continue the Ditorpan at the moment. Haven't called my urologist about it either... something I need to do.Oh, the joy and lament of chemistry! Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 19, 2004 Report Share Posted October 19, 2004 Thx guys for your responses.Ginger, yep I actually have 2 new meds at home that I've filled and just haven't felt like being sick with side effects. Been down this road too many times before. I guess we get a little gun shy after awhile Quote Link to comment Share on other sites More sharing options...
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