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.

Wednesday, June 8, 2011

Easy to Read Blood Pressure Chart

I came across this blood pressure chart a while back and I think you all would like it. For those of you with POTS, especially those just diagnosed, it makes understanding changes in blood pressure a bit easier. Hope it helps!

Click here to view full page image.


Wednesday, June 1, 2011

Yoga for Ehlers-Danlos Syndrome

Hey, friends. Hope you are having a nice day! I am very excited about my topic today, so without further adieu...

I have shied away from doing yoga my entire life. The few times I have tried pilates I have dislocated my shoulders and that was enough to keep me far away from anything similar. I also was under the impression that yoga would be "bad" for someone with Ehlers-Danlos Syndrome, as it would stretch things too much. Doctors had cautioned me from doing anything to over-stretch my body and I assumed yoga would be suspect; that is, until I met my current yoga instructor about a year ago.

"A moving body is a healthy body. Once you stop moving, it is harder to start moving again," I can hear Kathy saying to our small class. Out of the five people in my class, I am by far the youngest, by decades - I would guess the average age to be about 70. "The goal is not to stretch ourselves into pretzels, but to be able to keep doing the things we need, like get in and out of the car." Alright! Exactly what I need!

I decided yoga was a goal of mine when my back and flank pain became so persistent that I was in tears everyday. The more I sat in bed because my back was hurting, the more my back hurt! Of course! Well, I can't help sitting in bed a lot of the time, as is the case with a body that gives out on me all of the time. However, I can try to keep in shape in any way that I can. I can't run a marathon. Most days I can barely make it up and down my street, and some days that just isn't going to happen. But - I can sit in a chair for a few minutes, stand for a few minutes (unless my POTS is bothering me) and even bend for a few minutes - and that is all I need for a complete yoga workout to stretch my body in the normal range of motion, and most importantly, work on strengthening and toning. I especially need a strong core, which will help keep my back working properly. I do not do yoga to gain flexibility, I do it to keep the mobility I have and to help relieve some mental and physical pain. I do have to say, the yoga hasn't helped my flank pain one bit, but it has helped other parts of my body feel a little better, and mentally it has helped a bunch.

When I searched for a class, I came across The Yoga Center in Reno, NV, but I am sure there are similar facilities across the country. My class, Yoga for Every Body, is an "introductory level class for those with special health concerns such as injuries, arthritis, joint replacements, difficulty getting to the floor or re-entering an exercise program. The entire class can be done in a chair.

My left hip is super flexible still, 
but my right one is in constant pain and less-flexible.
To work with this, I use a block to stretch it just a bit,
but not over-stretch it, making sure to not hurt it more.
"Hatha Yoga is a system of exercises which originated in India several thousand years ago. This class includes postures, stretching, diaphragmatic breathing and relaxation. Its purpose is to bring balance, relaxation, and calmness to the individual. Regular practice can give a person increased vitality and an ongoing sense of well being." 

Kathy Randolph, my instructor, is a Certified Yoga for the Special Child Practitioner. If you are interested in finding a yoga class yourself, I would highly recommend searching for someone who has been certified in this technique, or someone who does yoga for people with disabilities, or both. She has a great understanding of what special bodies can handle.

I have only attended class when I am able to drive the hour-and-a-half in the car. The rest of the time, I just practice at home. I do find that the classes keep me focused and the direction the instructor provides is extremely useful. I highly recommend attending classes at least some of the time. The type of yoga I have been practicing is Integral Yoga Hatha, and I have been learning ways to do the poses that don't overstretch my body or put stress on joints that are bothering me. The great thing about yoga is there a ton of different ways to do one pose. There are ways to do everything while sitting in a chair or sitting on the ground, so even people who are really limited in mobility can still reap the benefits. We choose the "easy" or least aggressive poses and only hold them for short periods of time. And, we all work within our abilities, each person in the class doing different versions of the poses to allow for the best workout for our own individual needs.

At home, the books I use that were recommended by Kathy are Integral Yoga Hatha by Sri Swami Satchidananda and the instruction book Integral Yoga Hatha for Beginners (Revised)
that goes along with it (purchased separately).

I have to say, I am thrilled to have taken up yoga, and I hope that this provides you all with some insight. Of course, each of us are different, but this may be beneficial to some of you. As always, I am not a doctor and I am not giving this as medical advice.

Now...back to my vacation!