Hey, everyone, it sure has been a while! I have been so very busy this summer, but am back in action with the blog now, and hopefully will have some good medical news soon, too.
As you can see, I have done a complete revamp of the website, which I hope you find to be user-friendly and full of the information you crave. Please take a peek around and check it out. In addition to being able to subscribe via email to my posts (I just send you an email when I post a new piece), I have joined the modern world and started tweeting. On the right-side of the blog you can click the link and follow my Twitter page.
I have some exciting news to share, which I hope leads to a better treatment plan for me - or at least gives me some new ideas to run with. Ready for it? (I know you are riddled with curiosity and excitement, ha!)
Drumroll, please...
I have moved to Columbus, Ohio (oh, the things we do for love!), and that means I am only a two-and-a-half hour drive away from the renowned geneticist and author Dr. Brad Tinkle! (Ahh!!!) Yes, as you can tell, I am really thrilled about this. Even more exciting, I get to have a consult with him on Friday of this week. I am really nervous about this, as nervous as I get before every major consult, and also feeling a bit overwhelmed since Dr. Brad tends to be known as a rockstar in the EDS world, but hoping that I walk away with some new tools and ideas. It would also be really nice if he could tell me anything, anything at all, about what might be causing the horrific flank pain I have. I will give you all the details as soon as I get back from the appointment - send me some good vibes!
I have so much to tell you all, but not today. I have to get all of my stuff together for the appointment and also have to work on my Thanksgiving Turkey Rescue project. Until next time, I hope you are having an amazing autumn, that your pain is manageable, and that you are filling your lives with love.
xo dani
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Wednesday, November 16, 2011
Sunday, July 10, 2011
Smiles and Pajamas
Hi, friends! Sorry for the break in posts, it has been a very busy few months. I have lots of updates and posts I am working on and will get them up soon, but until then I may just post a few random things. Today's randomness: zebra pajamas. Target (United States) currently is carrying these adorable (and ridiculous!) zebra PJs by Nick and Nora. I think they are the perfect addition to your collection of lounge clothes. They are comfy and cool for the summer, feature spaghetti strap tops and capri bottoms and weren't too expensive...around $20. For all of the female zebras that follow the blog, enjoy!
Note: I normally wear a women's (not junior's) size small or medium. These run a little large, so I opted for small. I have washed and dried them, they did shrink a bit, and now they fit perfect. This is nice, as they will hopefully fit all sorts of body sizes and shapes - they went all the way up to XL. I buy a lot of second-hand clothes and frequent the vintage/funky thrift stores, but pajamas are something I buy at regular stores, so these were a fun find.
Hope you are enjoying your summer and having a blast taking in the sunshine and warmth! Lots of love, hugs and light to you all.
xo
dani
xo
dani
Tuesday, June 21, 2011
Natural Treatment for POTS
One of the sites I really like for all things natural, NaturalNews, posted a great article today about Postural Orthostatic Tachycardia Syndrome and treating it with exercise. While, in my opinion, this article is specifically for those with stand-alone POTS and not POTS secondary to EDS, we can all take the advice from it. We can work within our limits (which may be higher than we believe them to be), and find ways to get exercise, which according to the article and other information I have read/heard, is the key to helping fight the syndrome; at the same time, we EDSers must be mindful of our bodies and joints.
While those of us with POTS secondary to EDS are usually thought of as having POTS because of our stretchy blood vessels, and this isn't going to fix us at a genetic level, I do think it would be beneficial to us and help relieve some of the symptoms, even if just temporarily. I have had several doctors tell me this, and also heard it at the conference I went to. The article also mentions that an exercise regime must be done indefinitely to keep symptoms at bay.
I am in the healing process from having tubes surgically removed from my ears, which means I will be able to get back to the pool again and hopefully that will help some of the POTS symptoms (along with the beta blockers I am now taking). I will have to find ways to workout in the pool that won't hurt me, as my shoulders and knees can't take much these days, but even grabbing a kickboard and just moving to get my heart rate up should help. There is a great bike/walking/etc. trail by the house I am moving to, so that will help, too. And, of course, keeping my body full of fluids, mainly water and some coconut water, along with lots of salt, is always helpful.
I am happy there is a positive article being circulated about POTS and natural treatments. Hope you enjoy!
Natural Cure Discovered for Debilitating Heart Syndrome POTS
Tuesday, June 21, 2011 by: S. L. Baker, features writer
(NaturalNews) Imagine simply standing up and feeling your heart speed up more than 30 beats a minute -- sometimes it races well over 120 beats a minutes. You also have heart palpitations out the blue and low stroke volume (the amount of blood your heart pumps with each blood). Even the amount of blood in your body is too low.
These are the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) -- dubbed "The Grinch Syndrome" because the majority of patients have a heart that is literally, to use Dr. Seuss' description of the Grinch's heart, "two sizes too small." POTS affects about 500,000 people in the U.S., primarily young women.
And while it isn't life-threatening, it can destroy the quality of a person's life and cause substantial disability by bringing on symptoms such as dizziness, lightheadedness, fatigue, inability to stand for prolonged periods of time (chronic orthostatic intolerance) and fainting.
But now there's evidence POTS can be cured without drugs or surgery, according to research just published in Hypertension: Journal of the American Medical Association. It isn't the easiest "prescription" for many POTS sufferers but knowing they can be cured may be enough to get them started on this natural path to total healing. The treatment? Regular exercise.
"The exercise training program is a resounding success in the treatment of POTS," Benjamin Levine, M.D., senior study author and director at the Institute for Exercise and Environmental Medicine at Texas Health Presbyterian Dallas, said in a statement to the media.
As anyone with POTS knows, the condition can cause such dizziness and fatigue that exercise can seem downright impossible. But the researchers figured out a way to help POTS sufferers begin exercising safely.
"The unique component is to start training in a recumbent (semi-reclining) position, which is important to those who can't tolerant standing. This strategy avoids the upright position that produces symptoms. We don't even let patients stand up to exercise for one or even two months," explained Levine who is also professor of medicine and cardiology and distinguished professorship in exercise science at the University of Texas Southwestern Medical Center at Dallas. "However, to maintain the benefits these patients will need to incorporate the training program into their everyday lives indefinitely."
There are a variety of recumbent or sitting exercises include cycling with a recumbent bike, rowing and swimming. Dr. Levine and his research team recommend exercise training for POTS patients that progressively increases in intensity, frequency and duration. The training regime, they said, should start with 30 to 45 minute sessions, two to four times per week. Eventually, patients work up to exercising five to six hours each week and they are encouraged to exercise upright when they are able to.
For the recent study, the scientists worked with 18 women (average age 27) and one man who completed a double-blind drug trial. The POTS sufferers were randomized to receive either the beta blocker propranolol, commonly prescribed for their heart condition, or a placebo for four weeks. After that time period, the research subjects participated three months of exercise training. There was also a control group of 15 non-POTS healthy participants who participated in the study.
The results of the study showed that all POTS patients who completed the exercise training showed improvement in physical function scores. What's more 95 percent of them showed improvement in their ability to function socially.
Every single POTS patient who completed the exercise regime showed an improvement in heart rate responses and over half - 53 percent - were actually "cured" of their POTS. That means their change in heart rate with standing no longer met the diagnostic criteria for the syndrome.
More good news for POTS sufferers: aldosterone-to-renin ratio (the regulation of sodium balance, fluid volume and blood pressure) has long been known to be low in people with POTS and the standard drug therapy given these people does nothing to help. But not so with the all-natural exercise regime -- the aldosterone-to-renin ration, which plays a critical role in how the body handles changes to blood circulation during prolonged standing, showed a dramatic increase in the POTS patients who worked out regularly.
The researchers' analyses also showed the group receiving beta blocker drugs showed no change in social function scores and very few patients taking the drugs improved their physical function scores at all.
"Exercise training is superior to the beta blocker in restoring upright blood circulation, improving kidney function and dramatically improving quality of life," Qi Fu, M.D., Ph.D., study first-author and assistant professor of internal medicine and cardiology at the University of Texas Southwestern Medical Center, concluded in the statement to the media.
While those of us with POTS secondary to EDS are usually thought of as having POTS because of our stretchy blood vessels, and this isn't going to fix us at a genetic level, I do think it would be beneficial to us and help relieve some of the symptoms, even if just temporarily. I have had several doctors tell me this, and also heard it at the conference I went to. The article also mentions that an exercise regime must be done indefinitely to keep symptoms at bay.
I am in the healing process from having tubes surgically removed from my ears, which means I will be able to get back to the pool again and hopefully that will help some of the POTS symptoms (along with the beta blockers I am now taking). I will have to find ways to workout in the pool that won't hurt me, as my shoulders and knees can't take much these days, but even grabbing a kickboard and just moving to get my heart rate up should help. There is a great bike/walking/etc. trail by the house I am moving to, so that will help, too. And, of course, keeping my body full of fluids, mainly water and some coconut water, along with lots of salt, is always helpful.
I am happy there is a positive article being circulated about POTS and natural treatments. Hope you enjoy!
Natural Cure Discovered for Debilitating Heart Syndrome POTS
Tuesday, June 21, 2011 by: S. L. Baker, features writer
(NaturalNews) Imagine simply standing up and feeling your heart speed up more than 30 beats a minute -- sometimes it races well over 120 beats a minutes. You also have heart palpitations out the blue and low stroke volume (the amount of blood your heart pumps with each blood). Even the amount of blood in your body is too low.
These are the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) -- dubbed "The Grinch Syndrome" because the majority of patients have a heart that is literally, to use Dr. Seuss' description of the Grinch's heart, "two sizes too small." POTS affects about 500,000 people in the U.S., primarily young women.
And while it isn't life-threatening, it can destroy the quality of a person's life and cause substantial disability by bringing on symptoms such as dizziness, lightheadedness, fatigue, inability to stand for prolonged periods of time (chronic orthostatic intolerance) and fainting.
But now there's evidence POTS can be cured without drugs or surgery, according to research just published in Hypertension: Journal of the American Medical Association. It isn't the easiest "prescription" for many POTS sufferers but knowing they can be cured may be enough to get them started on this natural path to total healing. The treatment? Regular exercise.
"The exercise training program is a resounding success in the treatment of POTS," Benjamin Levine, M.D., senior study author and director at the Institute for Exercise and Environmental Medicine at Texas Health Presbyterian Dallas, said in a statement to the media.
As anyone with POTS knows, the condition can cause such dizziness and fatigue that exercise can seem downright impossible. But the researchers figured out a way to help POTS sufferers begin exercising safely.
"The unique component is to start training in a recumbent (semi-reclining) position, which is important to those who can't tolerant standing. This strategy avoids the upright position that produces symptoms. We don't even let patients stand up to exercise for one or even two months," explained Levine who is also professor of medicine and cardiology and distinguished professorship in exercise science at the University of Texas Southwestern Medical Center at Dallas. "However, to maintain the benefits these patients will need to incorporate the training program into their everyday lives indefinitely."
There are a variety of recumbent or sitting exercises include cycling with a recumbent bike, rowing and swimming. Dr. Levine and his research team recommend exercise training for POTS patients that progressively increases in intensity, frequency and duration. The training regime, they said, should start with 30 to 45 minute sessions, two to four times per week. Eventually, patients work up to exercising five to six hours each week and they are encouraged to exercise upright when they are able to.
For the recent study, the scientists worked with 18 women (average age 27) and one man who completed a double-blind drug trial. The POTS sufferers were randomized to receive either the beta blocker propranolol, commonly prescribed for their heart condition, or a placebo for four weeks. After that time period, the research subjects participated three months of exercise training. There was also a control group of 15 non-POTS healthy participants who participated in the study.
The results of the study showed that all POTS patients who completed the exercise training showed improvement in physical function scores. What's more 95 percent of them showed improvement in their ability to function socially.
Every single POTS patient who completed the exercise regime showed an improvement in heart rate responses and over half - 53 percent - were actually "cured" of their POTS. That means their change in heart rate with standing no longer met the diagnostic criteria for the syndrome.
More good news for POTS sufferers: aldosterone-to-renin ratio (the regulation of sodium balance, fluid volume and blood pressure) has long been known to be low in people with POTS and the standard drug therapy given these people does nothing to help. But not so with the all-natural exercise regime -- the aldosterone-to-renin ration, which plays a critical role in how the body handles changes to blood circulation during prolonged standing, showed a dramatic increase in the POTS patients who worked out regularly.
The researchers' analyses also showed the group receiving beta blocker drugs showed no change in social function scores and very few patients taking the drugs improved their physical function scores at all.
"Exercise training is superior to the beta blocker in restoring upright blood circulation, improving kidney function and dramatically improving quality of life," Qi Fu, M.D., Ph.D., study first-author and assistant professor of internal medicine and cardiology at the University of Texas Southwestern Medical Center, concluded in the statement to the media.
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