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About barton

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  • Birthday 07/13/1953

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    Westport, CT
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    I'm an artist/ set designer

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  1. I also have Neurocardiogenic Syncope and I had trouble with the SSRI's too. Tried both Lexapro and Paxil at the lowest recommended dose and felt both times like I was crawling out of my skin. Stopped after a week each time. But I know lots of folks who have had little or no trouble with SSRI's. Klonapin is about the only drug that has helped. But I only take it sporadically as I feel (at least with me) I develop a tolerance and it becomes less effective with regular use.
  2. David- I remember not that long ago that you were nervous about drivng and going to Columbia. What were your experiences like there? It seems you got in fairly quickly. thank you for sharing your experience, it would help me a great deal Noreen Noreen, I made the appointment back in February to go to Columbia in late June. But fortunately their schedule opened up sooner. Also fortunately I got a ride both ways door to door from a friend who fortuitously had to be in the city at the same time. I took Klonapin before I left to lessen any anxiety about the experience which seemed to help. The staff at Columbia Presbyterian was friendly and I got to see the doctor almost immediately. He spent a lot of time with me and let me ask as many questions as I wanted without my feeling hurried. This isn't always the case in my experience. A lot of medical offices feel like mills where they are trying to see as many patients as possible in as short a time as possible. I'm going back in June for more tests. And hopefully the Mestinon will help. Fingers are crossed. Dave
  3. Mestinon is a drug normally used to treat Myasthenia gravis. Has anyone else had experience with this medication? I'm pretty sure what I have is Orthostatic Intolerance not Myasthenia gravis, but if the treatment helps, why not? I was at the Neurological Institute at Columbia Presbyterian in NYC on Tuesday. Had an exam, they ran some bloodwork (something to do with amyloids?) and I'm taking a test for metanephrines. I'm going back in 6 weeks for some autonomic lab tests too. I think my prior experience with total body irradiation and high dose chemo (for Leukemia) has them trying some unusual tests, or am I wrong and this is standard stuff for autonomic dysfunction?
  4. What I'm particularly afraid of is hurting someone else while I'm behind the wheel. I drove through a red light once. What if someone had been in the intersection? I think I would have noticed but I'm not sure. Since then I've restricted my driving. Not at night. Not more than 20 minutes at a time (I take a train to visit my girlfriend who lives 30 minutes away). Not more than one outing a day. My back seat is littered with half filled water bottles. I bought a Volvo because it is supposed to have great safety ratings. But mostly I call on my friends whenever they are available. Though I'm worried that they will get tired of always being on call. I tried walking to the nearest store once but ended up lying on the grass by the side of the road, shaking and sweating. Haven't tried that again. thanks everyone for the advice dave
  5. I'm new to this forum. Hope I can learn more about my condition. I started having symptoms in November '08, about 9 months after having cervical surgery for stenosis (C-4 thru C-6 vertebrae were fused). I've been to multiple cardiologists and neurologists since then. Was diagnosed with NMH after a tilt table test. Have been on midodrine, fludrocortisone, propanolol (40, 80 & 160 mg), Paxil, and occasionally klonopin, but none have made any difference that I can see. Not even sure I have NMH as my blood pressure doesn't necessarily drop much when I'm dizzy and my heartbeat doesn't increase much. I'm going to the autonomic lab at Columbia Presbyterian in New York in a few weeks to see what they can find. Hope they are a good place. Has anyone else been there? I'm also on a few other medications because I had an allogeneic bone marrow transplant for Leukemia 18 years ago, but I've gone off all of them, one at a time, to see if they were contributing to my symptoms . They weren't. I've changed my diet, worn pressure stockings (awful in the summer), also tried a variety of alternative med treatments & various vitamin combinations that have been recommended to me. None have had any discernible effect. I've only passed out once, but I'm chronically dizzy and lightheaded, even as I write this. When I drive (rarely nowadays) I feel like I'm drunk after a few minutes. I've gotten pretty good at avoiding situations where I stand in one place, like check out lines during peak hours. And I've learned I can delay the onset of symptoms by jumping up and down. But there's not much I can do about driving. Because I live alone & I'm miles from any stores I sometimes have to drive farther than I feel comfortable doing. I find rides as often as I can but often this isn't possible. Does anyone else find this the most difficult problem to deal with?
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