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autonomicreg

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  1. No problem And yeah, the pandemic really messed everything up haha. Hold out till October, it'll be worth the wait. (little secret: There's a waitlist you can opt into to be seen earlier when there are cancellations. I was supposed to wait 4 months to see him, but ended up getting in within 4 weeks.) And yes, I've continued doing telemedicine with him. My case is unfortunately a little more complex than disorders like POTS - I'm in my early 20s with Orthostatic Hypotension that was rapidly brought on by some serious infections I had over a year ago - so we're slowly transitioning me to get the care I need up here so I can continue being seen by specialists in person.
  2. Hi Lisa. I got my autonomic testing done at The Heartbeat Clinic in McKinney with Dr. Suleman. He was amazingly thorough - I must have had like 20+ tests done there. It's unfortunate I had to move right after he just started treatment with me. But I would recommend him without hesitation. No referral required, but I don't believe he's seeing new patients at the moment (due to the pandemic) if I remember correctly. This might have changed though. He may come off a bit rude to some people, as he doesn't have the best bedside manners. But I don't think this is intentional. He's a brilliant guy and really takes his work seriously - not all smiley happy making you "feel cared about" but not actually helping. I've went to enough doctors who had the best personalities in the world but didn't help me at all. So his serious attitude was refreshing for me. I've heard polarizing things on Dr. Blitshteyn. Seen great reviews on her and her practice...but also saw she's done some fairly questionable things like randomly shutting down her practice without telling patients for a whole year. And also she doesn't take insurance anymore which always makes me a bit cautious (I know this doesn't make her a bad doc, but I've had some crappy experiences with docs I've needed to pay out of pocket for in the past). But I'll look into it more. Seems like most New Yorkers want to keep their doc a secret 😜 Thanks!
  3. Hi all. I know there's a list on the site for many doctors in the area. However, I'd like to hear any personal experiences as these lists can still tend to be hit or miss. I recently moved up to NY from TX right after finishing all my autonomic testing. I'm hoping to find a great doctor up here. I'm upstate but am happy to travel to NYC of needed. Would be great to get some tips on who to go to here :) Thanks!
  4. I've just gotten compression stockings for the first time after being diagnosed a year ago. Haven't noticed much of a difference yet, but I know I need to stay consistent and give them time to work. However, I am curious, wouldn't compression stockings hamper the possibility of recovering from dysautonomia? Logically, I would think you'd need to force your body to naturally deal with and get used to orthostatic stress again on its own to heal. But compression stockings are an artificial aid that seems like a band aid for the problem. Wouldn't compression stockings prevent your body from making the necessary changes over time on its own? And wouldn't they make symptoms worse in the long run when you take them off as your body begins to depend on them? Not sure if I'm even remotely on the right train of thought. But I'd like to know if anyone can shed some light on my concerns.
  5. New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down.
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