For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Exercise and POTS and OI

A couple of months ago I posted the report prepared by Dr. Levine et al which described the study and results of their work with POTS patients.  Since Dr. Levine's team first study they have expanded their investigations into a second study which includes approximately 300 patients.

What I find mystifying: 
1. There are people with POTS who read the study and immediately dismiss the findings because of the small number of patients involved.
My response: Regardless of the number of patients, the results for those few were significant.  Since there are very few reports examining treatments for this condition, wouldn't a study like this, published in the American Journal of Cardiology, give some hope to those who suffer?  I surely hope that my blog posts also serve as additional information to help people make an informed choice about their own treatment.

2. There are POTS sufferers who believe that exercise is contraindicated in people with POTS or OI.
My response:  If there is an underlying defect of the body then perhaps.  If the diagnosis is just POTS or OI then I have yet to see ANY EVIDENCE that exercise is contraindicated.

Also, not all types of exercise have the same effect on the body and some may make the symptoms of POTS and OI worse. The exercises, as indicated in the Levine Protocol, require that the cardiovascular routines are done in a recumbent position and are performed within specific heart rate zones.  As the body becomes stronger and adapts to the cardiovascular challenges, the exercises can be performed upright.  As a long time POTS and OI sufferer I know what I can and what I can't do.  If I am symptomatic and try to do cardio on a treadmill or elyptical (upright) then I will definitely suffer from exercise intolerance.

3. Many POTS and OI sufferers assume that medications prescribed by doctors to treat POTS or OI such as midodrine or florinef are safe and/or effective even in the long term.
My response: There are scant studies on the effects of drugs to treat POTS or OI.  One study for Midodrine (Kapoor 2003,) which is cited frequently, was with 16 patients I believe.  All drugs used to treat POTS and OI have side-effects.  All of them.

My personal choice for treatment is diet (lotsa salt), exercise and healthy living as I believe the unknown, long term effects of drugs could be harmful.  My personal choice is to help and support my own body's ability to live with this as apposed to interfering with it.

My personal choice aside, please don't discount exercise as a potential treatment for Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance!

16 comments:

  1. Thank goodness you posted this. I cannot for the life of me figure out why POTS people immediately want to tear this study apart. Actually I can figure it out because I for one wanted to be skeptical and if I am honest about it, the reason is because I was being lazy. I wanted to believe I could pop a pill and be normal and I didn't want to put that much effort into my own recovery. I'm not saying that is why everyone responds so defensively about the protocol, but I would guess that has at least something to do with it.

    I also thought the same thing as far as drugs. Patients are so willing to take medications on a trial basis with absolutely no studies backing their safety or efficacy for POTS or OI. Their seems to be a bit of a double standard surfacing.

    I for one know of 3 girls right now who have gotten there lives back through Dr. Levine's protocol. You, Erina (who posted a fantastic youtube video about her journey) and Handmadebybunny on the Dinet site who quotes she is "almost normal" after 8 weeks on the protocol. THAT is plenty of clinical success for me to at least TRY!

    I started last week. I have now completed 2 bike sessions and 3 strength training sessions with my personal trainer. I am still surprised that I can even complete it, but I AM!! Am I more tired, YES and SORE, but I am taking one day at a time and keeping my mind on why I am doing this. Short term pain, for long term gain!

    Thank you Elizabeth for being one of my inspirations. I hope I can be the 4th girl recovered!
    Ashley

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  2. One word of caution... I am not aware of any long term studies on a high sodium diet and POTS. What are the implications on the kidneys and urinary tract after months or years? I bring this up because I developed cystitis from salt capsules. My bladder recovered with the cessation of salt loading. Just a musing.

    I have been to see Dr. Levine. I am with the group of patients that are well beyond his protocol, but unfortunately still have POTS. In fact, he told me that I have an athlete's blood volume and was well beyond his protocol. He told me to keep at it. My concern is that other physicians will assume all POTS patients are deconditioned after reading the article. I run 8 miles, lift weights, row, etc, etc, etc... I do not have exercise intolerance or any "flares" after exercise. Also, Dr. Levine is not anti-medication. In fact, he proposed various pharmacologic therapies as part of my treatment plan. So, I'm confused about the doom and gloom when it comes to meds. Yes, they do have side effects, but so does POTS.

    With that being said, try the exercise! To those that are exercising and still have POTS, keep your chin up.

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  3. Salt capsules! I was prescribed those too early on. Now the school of thought is salt capsules can increase dehydration (see previous posts).

    You make some great points!

    There are people who suffer from POTS or OI symptoms but still exercise regularly. I think that serves to highlighgt that deconditioning can cause or make worse POTS or OI but is not the only cause of the conditions.

    As for meds...my choice is to not compound my side effects by adding meds to the mix. They only help marginally and certainly not not as effective, for me, as the exercise and diet routine.

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  4. Just curious anonymous, since you are obviously well conditioned what other areas of health do you address? Diet, detoxification, nervous system? The reason I ask is I don't for one minute think being deconditioned caused my POTS. So I have to address other areas as well to try and give my body the best chance at healing and functioning in a normal fashion. I have addressed the diet (cutting gluten and sugar completely), detox (by juicing, wheatgrass, greens first, high antioxidants,etc)and nervous system (seeing an atlas orthogonal chiro). My upper cervical vertebrae is a mess. I just now added the exercise and I am hoping the combination of these things will help me to overcome POTS. I have already improved tremedously! OH and also having amalgam (mercury)fillings removed.

    Anyway, I am always curious when people still have POTS after exercise what other areas they are addressing? Thanks!
    Ashley

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  5. Ashley,

    I have a very healthy lifestyle and diet, along with multiple full spinal MRIs with no abnormalities. I've had numerous tests to rule out any known secondary causes of POTS. I don't have any fillings. Who knows?

    I try not to dwell on my limitations and do the best with the cards I've been dealt. Part of that is employing a healthy lifestyle: exercise, diet, and a regular routine with sleep being paramount. I have 3 theories as to what caused my POTS: 1) a virus I was not aware of that damaged parts of my ANS 2) a neurohumoral imbalance that researchers will identify in some POTS patients in the future 3) bad genes, expression triggered by stress, whether emotional or environmental.

    I will say being deconditioned is a very bad state for a POTS patients. I am still a huge proponent of exercise when possible.

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  6. anyone else feel there POTS began and/or quality of life diminished after a neck area injury/damage? Makes common sense that Inflamation in the upper back/neck area and/or blood vessels/arteries damaged and/or cranial nerves damaged would tend to throw off the homeostatic level of blood to and from the brain. This resulting in obv. many SYMPTOMS. Especially POTS SYMPTOMS. i.e. car accident leads to damage to the neck/head muscles around the base of skull to about the diaphragm level. Muscles in upper extremity that directly provide support to the spine are less than ideally functioning leading to ROM in spine to be too great or too small or one than other. going past normal ROM regularly damages nerves/ blood vessels/arteries leads to a snowball that grows in any direction possible. Autonomic responses are least noticed and thus are last to be noticed meaning POTS develops when you do just enough muscle damage to last years+ of symptoms but not enough damage to be obv. immeadiatly when they could have been easily treated, IMC. I think to when I was in between boys and mens sizes for clothes and grandma said I was in the grey area and I was SOL until I grew because they just dont make clothes for grey areas. Now a custom clothing store would have fixed that problem and is very rare to see anyone go to such lengths to avoid a semi too wide but long enough shirt. I feel my symptoms after structual integrity in neck was comprimised also all seem to fall into a "grey" area. Any more and I would have been a top priority for neuro types to look at me. Anyless and I wouldn't have any symptoms. JUST A THOUGHT.

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    1. YES. My son's problems ALL began after a fall which initially was treated as a concussion, then finally was diagnosed with a neck and back injury -- his C-1 and C-2 were knocked out of alignment pinching blood vessels, nerves, etc. that send communication to and from the brain and impact the autonomic central nervous system. 15 months later, he is still not better; we saw Dr. Rosa (google him) and believe his re-alignment is key to the cure; but his body was so whiplashed from the fall that this must be addressed first. good luck.

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  7. Our 18 year old daughter was diagnosed with POTS at 16 and has been symptomatic since she was in the 3rd grade. She is on 75 mg of Toprol and participates in show choir, school musical, and has played on the varsity soccer team and competitive cheerleading all through middle and high school. Her ped cardiologist believes her POTS happened from a virus when she was younger. She watches her diet (tried the salt pills when she was 12 or so but couldn't tolerate them). and has always been tall for her age and trim. She is progressively taking on more symptoms. This year brought on cold hands and feet and more than usual dizzy spells. Her fluid intake is good due to so much show choir rehearsal and trying to keep her complexion clean. We feel like at this point we are bandaiding the problem. Also her EKG last week looked alittle more haywire than most of them have.

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  8. I have mixed feelings on all of this stuff. The one line in your article made me think

    "" 2. There are POTS sufferers who believe that exercise is contraindicated in people with POTS or OI.

    My response: If there is an underlying defect of the body then perhaps. If the diagnosis is just POTS or OI then I have yet to see ANY EVIDENCE that exercise is contraindicated.""

    What doctors are even checking for underlying causes? My POTS doctors are a joke and just hand out the go-to meds and then if they don't work, just say, "see ya". They move on to the next POTSy that is more naive and willing to take the meds with consequences.

    I definitely have mercury poisoning from amalgams and that's sort of where I'm focusing my attention for the time being. We'll see what happens...

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  9. It can't be just POTS or OI. There has to be an underlying cause. POTS just means that your heart > more than 30 bpm when going from supine to upright. OI just means that patients can not tolerate being upright. If the underlying cause is actually just a small heart, then proper exercise should be a cure. If it is not, well then it has to something else. Exercise still may help with that, depending on the cause. I agree with you, birdlady.... the researchers need to find an underlying cause and then tailor treatment to the underlying defect.

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  10. This is rediculous. I was 16 when I was diagnosed and in the best shape of my life. I felt amazing and so alive and healthy before I got sick. I did gymnastics, competitive cheerleading, swimming, lacrosse, and even coached a cheer team. I worked out EVERY SINGLE DAY. I loved it. Practiced three or more hours EACH DAY, no matter what. I lifted and could probably lift twice my weight. I am only 5 foot and I was so strong and fit; I was a tank. I am 18 now and frail as anything. Once I got sick, I had to quit everything and lost THIRTY POUNDS of muscle. THIRTY. Tell me I got POTS and my other array of diseases because I wasn't in shape...I could not have been more fit. I would give ANYTHING in the world to be like that again. I tried an incountable number of times to go back to sports or just any kind of exercise again, but my body, even with thirty or so pills, just won't allow it. Please contain your ignorance in saying that POTS is caused from being lazy. Clearly the people who can exercise, have much milder cases and are very lucky. You should be thankful if you can, but unfortunately other POTS patients may have it worse- remember that.

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  11. I have talked to many great doctors and bad ones. The bad ones will diagnose POTS, the good ones will say pots is a secondary factor, remember most doctors arent looking for the cause and will just say yea its pots, if you want to label it thats fine, if your like me I was said to have POTS from the mayo clinic, which isnt that great of care unless its cancer or something major. Instead I have something I have been exposed to relating chemicals or envirometal related that causes "pots" like symptoms. Before you start taking the meds they pass out like candy, look at all options.

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    1. Anonymous-Can I ask how you came to the 'chemicals' conclusion? We are suspicious that that may be the culprit for our daughter.

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  12. I don't like it when I hear "deconditioned" to describe a P.O.T.S. patient. Eventually they get there with severe P.O.T.S., but like in my 16 year old son's case he went from walking fine to not being able to even stand up a minute after a quick outpatient surgery where he was put to sleep with general anesthesia. This was 2 years ago and he has been sooo sick ever since, suffering all of the time, if he tries to force himself to stand more than a minute he starts to get incoherent and 1000 times more sick and will collapse if he doesn't sit and he's had some bouts of extremely severe stomach issues. We still don't have any answers. I wish he would get okay. The doctors just kept saying everything checked out fine after the surgery. I saw his heartrate skyrocketing after surgery when he would stand when in the hospital and researched and found the diagnosis P.O.T.S and found a cardiologist familiar with it finally and he confirmed the diagnosis through a tilt table test.

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  13. When my pots hit I was in the gym 6 days a week 2 hours a day doing lots of cardio and strength training. I was definitely not deconditioned. I have been trying to ease my way back to the work out I was doing before but I can barely complete 15 minutes of floor exercises. I WISH I could get back into the gym...

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    Replies
    1. Have you checked out a Mast Cell problem? You don't describe why you can't finish exercising but if you are in shape then it is worth exploring.

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