RunningWild Posted May 9, 2012 Report Share Posted May 9, 2012 So I had a follow-up with my PCP after my visit to Cleveland Clinic 2 months ago.Basically, the results were "confirmed you have POTS, blood volume workup showed probably normal results- doesn't look cardiac-related"So they suggested the basic Midodrine increase, compression socks, physical therapy(?), and whatever.I stopped taking Midodrine because it wasnt working for me...I wear compression socks...My neurologist has me on beta blockers for migraines, but will probably be cool about increasing dosage to help with the POTS as well.Stuck again. The results also suggested venous pooling and that I could follow-up with a vascular doctor. Anyone have experience with this? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2012 Report Share Posted May 9, 2012 I'm wondering why he thought you should see a vascular doctor for the pooling? I think that's the first time I've heard someone say that. Does he think there's something the vascular doctor can do about it? Quote Link to comment Share on other sites More sharing options...
RunningWild Posted May 9, 2012 Author Report Share Posted May 9, 2012 That's what I'm wondering. I do have pretty bad varicose veins and stuff in my legs though... maybe he thinks there can be a relation there? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2012 Report Share Posted May 9, 2012 Oh, yea, probably so. I had read a year or more ago about the Nutcracker syndrome, where down-stream(lower half of body) it causes venous pooling. I was thinking maybe he was thinking along those lines. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 9, 2012 Report Share Posted May 9, 2012 I keep thinking a vascular Dr. might know something about this (pooling etc.) - seems like they should. I'm planning to see one myself somewhere down the road. Just one more avenue to check out. Quote Link to comment Share on other sites More sharing options...
RunningWild Posted May 11, 2012 Author Report Share Posted May 11, 2012 Has anyone ever gotten to the point where they stop trying?Stop testing, stop following-up on a weekly or monthly basis, stop searching for answers or reasons or ideas.I feel like that right now. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2012 Report Share Posted May 11, 2012 I am kind of in that mentality right now. Even though my long-range goal is to keep digging until I find answers, my mindset right now is like---Why is the medical establishment so laissez-faire when it comes to solving my issues??? It is overwhelming to read so many medical studies on a couple of my medical issues, and then can't find anyone who does any testing like in these studies. Because my issues are not clear-cut, it seems like these extra, in-depth tests could sort out some answers. If they don't do these tests, how can they just send me home to sit for another year and still have no answers? Why aren't they sending me where the answers and/or research are? Why do I go to a big-named place and leave with totally unanswered questions and absolutely no better insight than going to a small-town GP?It is soooo frustrating. Quote Link to comment Share on other sites More sharing options...
RunningWild Posted May 11, 2012 Author Report Share Posted May 11, 2012 I think it bothers me more so because I just keep getting 'its pots' 'its pots' 'its pots'.Great. Well WHY is it POTS? I get it, but what next? Dang conundrums.Also, it bothers me that my mom is so worried about me, and she feels like im not trying hard enough to get answers. Quote Link to comment Share on other sites More sharing options...
bellajulz Posted May 11, 2012 Report Share Posted May 11, 2012 Hate to say it, but I have been in the same slump the last year. I have had pots going on 4 years and initially I tried and did everything that was suggested to me. Though now I think its more disappointing to still not be well, though I am going to try acupuncture when I can afford it. Someone on the facebook pots page said it made her 90% better, so I wanna give it a try. Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted May 11, 2012 Report Share Posted May 11, 2012 Yes I gave up a while ago on it. I hadn't seen my doctor at Vanderbilt for almost 2 years and when I was relapsing this past winter all she wanted to do was repeat the same 2 (10 minute stand and qsart) tests that I have already done. I cancelled the appointment. I don't know what else to do or where else to go for that matter. I am basically self treating at this point with just lifestyle stuff. The main things that have helped me have been gluten/dairy/corn free diet and exercise. She never mentioned either of them and honestly down played exercise which has been the most beneficial. At least some of the docs like Suleman recognize there has to be multiple approaches to this condition. I think he uses what he calls a 5 prong approach (correct me if I'm wrong) with diet, exercise, drugs, salt and the biofeedback all together. I tend to lean more towards these types of doctors and unfortunately there aren't any close to me. But yes I refuse to spend my life running back and forth to testing and appoitments only to get more of the same. Quote Link to comment Share on other sites More sharing options...
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