Mrs. Burschman
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Everything posted by Mrs. Burschman
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Relaxation Response And Gene Expression
Mrs. Burschman replied to firewatcher's topic in Dysautonomia Discussion
Well, I did biofeedback for a while. I was able to reduce my heart rate somewhat -- but never down to normal. And as soon as I stopped each exercise, it was back to my normal. So I guess if I just did biofeedback 24-7 it might help. Otherwise, not so much. Biofeedback expert I went to said as much. He gave up on me. That's not to say it's a BAD thing to do. It was relaxing. I just don't think it's a cure, at least for me. Amy -
Tortured By Rls During Hemodynamics Test!
Mrs. Burschman replied to familypast's topic in Dysautonomia Discussion
Ugh! Me too! I get it sometimes. I'll have it for a while, then it will go away (thankfully.) It's really uncomfortable. I always feel like I have to point and flex my feet continuously so I feel that instead. I'd describe it as my legs feeling nauseous, although I know that doesn't actually make sense. Amy -
Anybody See Dr. Julian Stewart?
Mrs. Burschman replied to juliegee's topic in Dysautonomia Discussion
I wish I was still an adolescent so I could take part! I have no idea what type of POTS I have. I wish I did. I can't imagine that it wouldn't be useful in management. Amy -
Tested "positive" For Celiac Disease
Mrs. Burschman replied to iheartcats's topic in Dysautonomia Discussion
The woman I'm talking about (my mom's cousin) didn't have POTS or autonomic issues, as far as I know. She was REALLY sick though. Was down to something like 90 pounds, horrible gut pain, etc. It seems like I remember that her hair was even falling out. When she found out it was celiac and went on the diet, she had an amazing recovery. She's doing great now, as long as she avoids gluten. Amy -
Open Invitation To Visit Florida
Mrs. Burschman replied to maggie's topic in Dysautonomia Discussion
Maggie, That is very kind of you, and it sounds lovely. I hope someone is able to take you up on your offer. It would probably be fun to meet! Amy -
Ncs Perscribed Citalopram (celexa)/living With Ncs
Mrs. Burschman replied to Detrick7's topic in Dysautonomia Discussion
Hey Detrick, Lots of people here on the board take SSRI's for our POTS/dysautonomia/NCS, not depression. I've been taking Paxil forever. It is annoying, however. Sometimes I get mailed things from my insurance company about "Coping with depression." It's stupid, because SSRI's are taken for all SORTS of things. I also take metformin, a diabetes drug, for polycystic ovarian syndrome. I don't have diabetes. So I get mailed stuff about diabetes, too. It's annoying. I feel your pain. Amy (Mrs. Burschman) -
Tested "positive" For Celiac Disease
Mrs. Burschman replied to iheartcats's topic in Dysautonomia Discussion
I know of one woman in particular who was sick as a dog until she finally was diagnosed with celiac. Went on the diet, and feels great now. So celiac stinks. But the possibility of a "cure" or at least vast improvement is wonderful! Amy -
Why Does Clothes Shopping Not Count As Exercise?
Mrs. Burschman replied to firewatcher's topic in Chit-Chat Forum
I would chose whichever one will make your former classmates say, "Wow! She looks great!" -
5 Questions For People With Pots (please Help)
Mrs. Burschman replied to avidita's topic in Dysautonomia Discussion
Keep in mind, however, that SSRI or SNIR antidepressants help a lot of us with the symptoms of POTS. So don't automatically punch any doctor in the nose who suggests it. Just if they think it's all "anxiety." Amy -
Brain Fog- How Do You Deal With It?
Mrs. Burschman replied to friday7's topic in Dysautonomia Discussion
Hey Shadesofgrey49, I spent 10 years in journalism before switching careers (politics.) Congrats on graduating, and good luck in finding a good job that works for you! Amy -
Hi Niki, and welcome! Have you been diagnosed with POTS or another autonomic disorder? What you describe isn't one of the typical symptoms, but there are so many ways they can manifest themselves. When I was at my worst, I had tingling in my hands and my feet, and a few times, I had trouble walking because I felt like my legs were rubber and would just go out from under me. It sounds like a good question to ask your doctor. Amy
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5 Questions For People With Pots (please Help)
Mrs. Burschman replied to avidita's topic in Dysautonomia Discussion
1. I have had POTS for years, and I've done some daylong hikes. I did Mount Lassen with POTS, which is above 12,000 feet. This summer I did a nine-mile hike in the Tetons. So yes. Just because you can hike doesn't mean you don't have POTS. 2. Xanax does help a lot of people with their POTS symptoms. Me personally, it doesn't. 3. I walk 1/2 hour to and from work each day, and also do 30 minutes on the elliptical. It's a little harder than it used to be for me right now (I'm in a bad period right now) but I can still do it. And yes, I have POTS. 4. I'm usually fine walking around. Standing still I usually feel cruddy. 5. They can. Keep in mind that anxiety and POTS can feel a lot alike, because both can include overreactivity of the autonomic nervous system. HOWEVER, people who are "just anxious" do NOT have positive tilt-table tests. So the doctors who say it's "just anxiety" are JUST PLAIN WRONG. If I sound irritated, it's just because I was misdiagnosed for 15 years as just being a basket case when I really did have something physically wrong with me. Hope that helps! Amy -
Tested "positive" For Celiac Disease
Mrs. Burschman replied to iheartcats's topic in Dysautonomia Discussion
Cat Lady, I'm sorry. I would be upset, too. I really love baked goods. But if it makes you feel better, it's probably worth it. Doesn't make it any easier, though. Amy -
Hey Nina! I'm glad DINET is on Facebook! I requested membership today. Amy
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I think it can be helpful. Deconditioning can be a cause of POTS, so it helps make sure that's not the case. Also, if pooling is an issue, building up the leg muscles can help improve circulation. And there's always a psychological boost that comes with being able to get some exercise. But it might also be that those of us who are able to exercise aren't as sick to begin with, not that the exercise made us better. I don't think exercise has any relationship at all to my POTS. I've always been active, even before I started to have symptoms in my teens, and I've kept it up even with dysautonomia. I don't think it's helped or hurt either way. It certainly hasn't helped me "get over" it. You'll have to see what other people say, though. They might have different experiences. Amy
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Brain Fog- How Do You Deal With It?
Mrs. Burschman replied to friday7's topic in Dysautonomia Discussion
It's weird -- sometimes when my POTS is particularly bad, I have trouble finding the right words (which stinks since I'm a copywriter.) Then I'll improve, and it's not a problem anymore. Very odd. Amy -
Good! I hope it helps! Amy
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I think it helps to show that it's just POTS and nothing else heart-related. I did it. It didn't show anything out of the ordinary for POTS. I didn't feel like it was a waste of time or money, but my insurance paid for most of it. Amy
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History Of Cardiomyopathy In Family??
Mrs. Burschman replied to ramakentesh's topic in Dysautonomia Discussion
Hearts, no, migraines, yes. -
Argh! That's really frustrating. Especially the have-to-be-off-all-your-meds part. I haven't ever taken part in a drug study. I never had any reason to, because Paxil was working so great for me. Not as great anymore! I'll be looking for something else to add or use instead. So let us know if you find something great! Do you know if it's the type of study where you might get into the placebo group and not get any drug at all? That's what I'd worry about. I'd be sick as a dog. I can't function without meds. Amy
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Hey Kayjay! Welcome to the world's biggest time sucker! I do love Facebook, though. I'm more in touch with family and friends than I have been in years! There is a group for POTS, and dysautonomia, but I don't pay much attention to them. This board is much more useful. Send me a PM with your Facebook name, and I'll be your friend! You might regret it, though. I post a lot of goofy observations. I don't think DINET is on Facebook, but I might be wrong. Amy
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I have nothing useful to add. But congratulations, and I hope it goes as well as possible! Amy
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I think it is pretty typical. Mine's almost never below 90, and it can get up to 140-160. I've never been able to follow the guidelines for what my heart rate should be during exercise. According to those, I'm terribly out of shape, and I'm not. Amy
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Hi Jen! You've found the right place! We're both glad and sorry that you're here. Keep looking for answers. It's a long process, and some of us have yet to find out why we ended up with POTS/dysautonomia. But most of us do find some relief once the right medication and lifestyle adjustments are made. Welcome aboard! Amy (Mrs. Burschman)
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I'm At My Frustration Limit...
Mrs. Burschman replied to MightyMouse's topic in Dysautonomia Discussion
I'm sorry, Nina. I wish I could take away your pain. Nothing's worse than hurting all the time! Just know that we're here for you. Amy