POTS & Exercise

April 19, 2018

 

Current research has shown that POTS is not caused by deconditioning (decreased muscle and cardiac strength caused by inactivity).

-Pulmonary Circulation, 2016

 

I want to start with a few disclaimers:

-When I first developed POTS there is NO WAY I could've exercised. Once I was put on a few stabilizing medications, I now realize that I should've done whatever I could to maintain some strength. Instead, I didn't move for an entire month during a hospital stay and my muscles atrophied. To this day, I have severe pain due to the muscle atrophy I experienced from the waist down on the right side of my body. During the first few months of developing POTS, I couldn't and shouldn't have exercised because my orthostatic intolerance was as severe as it gets. But I should've kept moving a tiny bit. I'm saying this because I don't necessarily think that everyone should start exercising the moment they develop POTS, in fact, I think that could be detrimental. 

-Exercise for POTS looks a lot different than the kind of exercising we did before POTS.

-I am not a doctor. I'm just sharing what has personally worked for me and what current research has shown.

-A lot of us have co-morbid conditions and should exercise in a way that accommodates all of them. Working with a physiotherapist or going to cardiac rehab can often help with this.

-Besides walking my dog, I do all of my exercises sitting down or lying down to this day.

I used to think that exercising with POTS was an oxymoron. After being bedridden and/or housebound for around 2 years, I want to share my experience about how exercise has increased my quality of life. I also want to argue that exercise is an essential part of the treatment of POTS. Bear with me, I know what you're thinking: exercise feels like torture, it doesn't feel natural, it makes all of our symptoms worse, and since exercise didn't prevent POTS there's no way it could cure POTS, and you're right! Medication is one tool in the toolbox for treating POTS, supplements and lifestyle changes are one tool, and exercise is another.
 

According to Dysautonomia International, "exercise should be considered an essential part of treatment for almost all POTS patients. Reclined aerobic exercise, such as swimming, rowing and recumbent bicycling, as well as strengthening of the abdomen and legs, have been found to be most beneficial."

 

I'm going to be breaking down today's blog post into 5 sections: my experience before and with exercise, why exercise helps POTS patients long-term, the controversy, FAQ I get in regards to exercise, and further resources.

 

Image: the Disability and Deconditioning cycle from Springer Link

 

My experience

 

I was active before I developed POTS. So active that when I started slowing down the month before I became bedridden with POTS, I saw two counsellors at my school because I thought I must be getting depressed if I couldn't get myself to the gym. I didn't have any symptoms of depression besides lack of motivation and increasing fatigue. I did, however, have mild symptoms of what I'd soon learn was Postural Orthostatic Tachycardia Syndrome.

 

On January 20th 2014 I became bedridden with POTS and those once-mild symptoms became severe; severe enough that I had a "symptom journal" on my phone in which I recorded over 30 smptoms every day. I couldn't think straight, I couldn't stand or walk, I couldn't sit up, and if I tried to, I'd have a seizure and pass out. 

 

Months after developing POTS, I received a diagnosis and the trial-and-error process of pharmacological treatments began. I was extremely hypersensitive to medications so I was continuously disappointed when I'd try something that would end up hospitalizing me instead of helping me. I quickly learned that slowly introducing a medication to my body minimized the side effects and slowly improved my symptoms. 

 

My mom is an amazing researcher and learned that I had POTS before any doctor did and before any diagnosis, we joined a lot of Facebook POTS support groups. These support groups were a lifeline to us in our darkest nights.

 

I started hearing a lot about exercise and POTS and thought "if you can exercise with POTS, your POTS must not be that bad."

 

I saw a "POTS Runners" Facebook group at the time and pridefully rolled my eyes while thinking "obviously you can't have POTS if you can run. You must just get lightheaded sometimes. Must be nice." Obviously THEY only had mild symptoms. Obviously THEY have never been bedridden and they reacted better to the medications than I do.

 

Then I read about a case that forced me to swallow my pride. The case was about a woman who had been flat on her back for 3 years due to POTS and was now walking and living a semi-regular life thanks to Dr. Levine's POTS exercise protocol. 

 

It still didn't make sense to me though. I was a dancer, a cheerleader, a runner, and a gym-enthusiast. My boyfriend at the time was a personal trainer. We worked out all the time at the gym in my apartment. If exercising didn't prevent me from getting sick, how the heck was it going to help me?

 

These Facebook POTS support groups then made me realize that I was deconditioned and it was exasperating my symptoms. I thought I had to wait until I was "feeling well enough" to start exercising. After all, how could I possibly think about exercising when I can barely sit up?

 

Decondition: "to diminish the physical strength, stamina, or vitality of; weaken." -Dictionary.com

 

When we, often suddenly, become ill with POTS, we spend all of our time and energy trying to get back to how we were feeling before sickness. We naturally think that once we receive the right pharmacological treatments, we'll feel better and then do more. I realized, better late than never, that you have to exercise before you feel better to prevent you from feeling even worse.

 

To this day, I remember a comment from a woman with POTS on one of these Facebook support groups. She said that when she first developed POTS and became bedridden, her husband would make her walk down their driveway to get the mail every single day no matter what. She said she would cry and beg him not to make her, but he told her she needed to keep her strength up. She then expressed how grateful she is that her husband made her do this because it helped her so much in the long run. I remember reading this and being inspired because she still made it to the end of the driveway every single day, even when she didn't think she would. I also remember thinking that there's no way I'd ever be able to make it to the end of the driveway. The only time I ever left the house was for a doctor's appointment and walking down the stairs of my house to get into my wheelchair to go to the appointment was a huge event.

Three months into being bedridden I was hospitalized which exasperated any deconditioning I previously experienced. I had tried almost all of the medical options for POTS during that one month hospital stay, was finally on the medications that helped me, but I was feeling worse than I was before the hospital stay. The day I got home from the hospital, I stood in my shower for less than 30 seconds in which I collapsed (I didn't faint) from my muscles not being able to hold me up. This wasn't POTS symptoms, this was a result of being deconditioned. I became bedridden in January 2014 and in June my then boyfriend told me about a once-a-week church event that would be starting up in September. I became adamant about going: it would be a great opportunity to reconnect with my church family, it would be awesome to get out of the house, and it would only require me to sit up for 2 hours a week.

 

I slowly started an "exercise plan" to help me reach this goal. During the first week it required me to sit up for 60 seconds (I timed it on my phone) a day and do ankle and wrist rotations lying down (pictured below). That's how deconditioned I was. The next week I would sit up 1 minute a 30 seconds a day and increased the number of ankle and wrist rotations. I created this "exercise program" by myself, based on my current abilities, with no professional guidance. Not only was I able to sit up once a week starting September, but through this small "exercise program" I made up for myself, I was eventually able to progress to and through Dr. Levine's exercise protocol for POTS patients, no longer require a wheelchair, go to that once-a-week Church event, and then go back to school from reconditioning myself.

 

I designed this program by myself based on what I was able to do at the time. My only 2 rules were: I had to do it every single day no matter how I was feeling, and that each week I had to do a little bit more than the prior week. I did around 30 weeks of this before I was able to start the first pre-month (talked about below) of Dr. Levine's POTS protocol. As pictured above, I started designing my workouts around Dr. Levine's exercise program at around 20 weeks, but was still unable to go on the recumbent bike for as long as he suggests.

 

Slowly, over 20 weeks, I was able to start doing a little bit more. But you know what I still thought every single day?

 

"I can't do this. This is torture. I am never going to get better. I am never going to be able to sit up for 2 hours."

 

"It always seems impossible until it's done." -Nelson Mandela

 

Through my own research, and help through many POTS Facebook support groups, I realized that it was essential to strengthen my core and legs because that would help the most with blood-pooling. The exercises that helped me recondition myself the most were:

 

1. "Leg Pillow Squeeze - while laying down or reclined in bed, put a pillow folded between your knees and squeeze. Hold it for 10 seconds. Repeat." -Dysautonomia International

2. Hip raises. As pictured below (Image from Women's Health"):

 

 

4. Leg raises. The leg raises I did the most are pictured below.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

5. A couple weeks into my personally-designed "exercise program," my mom bought me a clip fit-bit. I realized that from walking to the bathroom multiple times a day and walking around upstairs once a day, I was only walking around 2-300 steps a day. This was very alarming to me considering the recommended daily steps for an average person is 10,000 and the average person does around 5-8,000. Using a fit bit to track my steps each day helped me have concrete goals and very simple ways of measuring whether or not I met these goals. For example, when I first started using my fit bit, my goal was to walk 350 steps a day. Each week I would increase the amount of steps I'd take by 50.

 

 

Image from Limberation.

 

When I started this "exercise plan" I was learning more about Dr. Levine's Exercise Protocol from Facebook support groups and realized that, in order to receive a free copy of his program, I just needed a doctor of mine to e-mail his office. I asked my family doctor to contact Dr. Levine to request the program (which took less than a month for her to receive, and then she e-mailed it to me) and to refer me to cardiac rehab (which took months to get into, which was fine, because I was not close to being ready. I was still mostly bedridden months into my "exercise program.").

 

When my family doctor e-mailed me Dr. Levine's program, I was overwhelmed by all of the information. All of this information about "baseline heart rates" and "heart rate goals" confused me. Dr. Levine believes that someone with POTS should go off of their medication when possible before starting this program. This belief of his has inspired a lot of debate between researchers and awareness groups alike (I'll be talking more about this below). However, Dr. Levine's research has revealed a huge success rate with his program, and the numbers were convincing enough for me. 


However, like many other POTSies, I didn't go off of a single medication to start his program. So I didn't need to know anything about baseline heart rates. I just needed to see the daily exercise program. Dr. Levine organizes it in the following way: there are 6 months in his program as well as 2 "pre-months" to begin if you are deconditioned to start the official "month 1" of the program. I was so deonditioned at the time that when I saw the first day of pre-month 1, I cried. I never thought I'd be able to sit up on a recumbent bike for 5 minutes, let alone ride it for 5 minutes.

 

Unfortunately, but understandably, I'm not allowed to share Dr. Levine's POTS exercise protocol with you. When we requested the program, we were asked not to share it so Dr. Levine could keep track of the progress of his patients (although I don't think his office has ever e-mailed us since) and to ensure that we have a doctor who is aware that we are starting this program and can help support us during it.

 

However, I'm going to show you what the first week of the first pre-month looks like so you have an idea:

 

 

Where it says "base pace" the pace is dependent on your heart rate if you are not on a beta-blocker. The program explains how to set the pace if continue taking your beta-blocker throughout the program using the following description:

 

Every month (and pre-month) of Dr. Levine's POTS protocol has you excising every week day, with weekends off, while alternating between cardio and strength training. I share this so you know what to expect. I know all of this information is overwhelming and I cried every time I read it for a couple weeks because I found it not only confusing but impossible. However, after 30+ weeks of my own "exercise program" I started a personally-adjusted version of Dr. Levine's protocol. I was living at my mom's at the time and she had a recumbent bike she brought upstairs and put right in front of my bedroom. The first time I went on the bike was for 30 seconds.

 

30 seconds of pedaling so slow that the timer on my recumbent bike stopped because it thought I had stopped off. 30 seconds and I still needed to go on oxygen to recover.

 

 

When I was finally able to do the exercises listed in the first week of "pre-month 1" of Dr. Levine's protocol on my own at home, I started cardiac rehab two times a week. Before I went, I wasn't even leaving the house more than 2 times a week. I only left my house for doctor's appointments and 1 church event each week. I really doubted my ability to consistently attend cardiac rehab, let alone participate. However, I attended every single session but two: one I didn't feel well enough to go to, and the other I showed up to but I had to be wheeled over to the emergency room across the street before it began.

 

During my time at cardiac rehab, I completed both pre-month 1 and pre-month 2 of the Levine protocol. Sessions were around an hour and a half each in which half was dedicated to cardio while the other half was dedicated to strength-training. There was a cardiac nurse and exercise physiologist at every session that designed individualized workout plans for every individual. I wore an ECG during the entire session and the cardiac nurse would come over to check my blood pressure every few minutes. Everyone else there was a man over the age of 50 who either suffered with a heart condition, diabetes, or both. I took frequent breaks during the cardio sessions while everyone else there out-ran me. I found the strength component surprisingly easier. I did this program until I graduated 4 months later (I did pre-month 1 for 2 months and pre-month 2 for 2 months). On my first day of cardiac rehab, my mom wheeled me in. On my last day, I was able to walk in and out on my own without issue.

 

 

The strange thing about exercising with POTS is that you don't feel like it's helping. You think it's making everything worse. I think this is why it's hard to find the fine line between exercise that actually does make your POTS worse, and exercise that is only temporarily flaring your symptoms while improving your quality of life long-term (I'll speak more to this below).

 

The fatigue doesn't stop. The shortness of breath doesn't stop. The tachycardia doesn't stop. The pain doesn't stop. The lightheadedness and presynccope doesn't stop. And the self-doubts definitely don't stop.

 

But eventually they all stop torturing you to the extent that they once did.

 

For me, it wasn't until 2 years later when I was able to realize how far every single one of those weekly increases in exercise pushed me in the right direction. 

 

Reconditioning felt like torture. I'm not going to lie. Reconditioning was physically, mentally, and spiritually draining; this is why I didn't complete Dr. Levine's exercise program at the rate he recommends. I had a lot of medical trauma, was still enduring a lot of loss, still shocked by my life, and fighting the excruciating daily symptoms POTS causes. I knew reconditioning was necessary but I also knew that I had to do it at a pace that protected my already vulnerable mental health. I wasn't able to have friends over on days I exercised because I was too unwell to sit up or speak after. So in many ways, I prioritized my mental health over a strict and rigorous exercise program. Many people have POTS-literate doctors who recommend other exercise programs because of this (like the CHOP exercise program I'll link below). Other methods of exercising with POTS don't have as much scientific support as Dr. Levine's program, but they often are helpful and at a more reasonable pace than Dr. Levine's protocol (I've never done it at the pace he suggests. It took me 2 years to do 2 pre-months and 3 months).

 

Once reconditioning enabled me to sit up, I would often go out to a cafe or church event, in my wheelchair, instead of choosing to exercise. Once I could go to school I wouldn't exercise on days I had homework. To this day, I'm still finding that balance between protecting my mental health while still challenging myself physically.

 

 

Fighting POTS has been the hardest thing I've ever endured. Reconditioning has been the second hardest.

 

 

Why exercise?

 

Current research:

  • In a 3 month period, exercise training has been shown to increase "cardiac size and mass, blood volume, and VO2peak in POTS patients" (Fu & Levine, 2016).

  • A study showed that treating POTS with just a beta-blocker decreases the tachycardia but treating POTS with both a beta-blocker and exercise improves heart rate and stroke volume, and thus, decreases symptoms (MedScape).

  • "20 hours of bed rest can induce loss of plasma volume, impaired baroreflex function, and orthostatic light-headedness in many people. These symptoms are quickly relieved by lying back down and induces a very rapid downward spiral of orthostatic intolerance, hypovolemia (loss of plasma from the blood), cardiac atrophy (about 1% loss of heart muscle per week in bed) progressive bedrest deconditioning and ultimately incapacitation. After only 2 weeks of bedrest or spaceflight, nearly 2/3 of people can't stand for 10 minutes!" -Dr. Levine. Therefore, POTS causes deconditioning but deconditioning also causes POTS-like symptoms (BUT NOT POTS!) in healthy subjects. Deconditioning decreases blood volume, which POTS patients already experience, and decreases heart size which decreases the heart's effectiveness in pumping blood. So deconditioning exasperates the symptoms we already have. 

  • "3 weeks of bedrest was worse for the body's ability to physical work than 30 years of aging [for healthy participants]!" -McGuire et al., 2001

  • "Ten of 19 patients no longer met POTS criteria after training, whereas patient quality of life assessed by the 36-item Short-Form Health Survey was improved in all patients after training." -Fu, Levine, et. al. (2010) If any other treatment had a 50% likelihood of improving our symptoms to the point that we would no longer meet the criteria for POTS, we'd be lining out the door (passing out from standing too long haha) just to get access to it. But reconditioning is the toughest thing to do when you have POTS. In this study, 50% of patients no longer met the criteria for POTS while the other 50% experienced improved quality of life, but still met the diagnostic criteria for POTS.

    And despite what I was convinced of, when I started exercising with POTS, there have been no deaths or long-term flares recorded as a result of Dr. Levine's protocol. ;) I say that half-jokingly because when I was gasping for air after 2 minutes of the Levine protocol, on the floor trembling, I truly thought that there MUST be patients who have died from exercising with POTS. 

 

The controversy:

 

  • "Dr. Levine’s team studied 27 people referred to Southwest with POTS.
    The chief findings were:
    1) None of the subjects had measurable abnormalities in their autonomic nervous system.
    2) Many (about 70%) had small hearts and low blood volume, findings characteristic of deconditioning.
    And 3) On average, subjects responded very favorably to a prolonged, graded program of exercise therapy.
    The authors concluded that POTS is 'per se' a condition caused by deconditioning. Because of the small hearts they noted in most of their subjects, the authors proposed (likely with tongues in cheek) renaming POTS to Grinch Syndrome (because grinches, according to definitive sources, have small hearts).

    Newspapers around the country jumped on this article when it was published, keying on two points: the cool new name Grinch Syndrome, and the idea that POTS is self-induced by leading a sedentary life. This widespread misrepresentation of the study triggered an impressive reaction from POTS sufferers around the world. People dealing with POTS took to social media in great numbers to complain about this study. In addition to the obvious desire of not wishing to be referred to as grinches, they asserted that attributing all cases of POTS to deconditioning is not only wrong but likely harmful to POTS sufferers.It is undoubtedly true that the vast majority if not all people with significant POTS are deconditioned. You would become deconditioned too if you could not stand up without becoming extremely lightheaded or passing out. And the study indeed confirmed that this is the case.But the fact that patients with POTS might be shown to have deconditioning does not prove (and in fact, it does not even strongly suggest) that deconditioning is the cause of POTS, rather than the result. People who are diagnosed with POTS already have an extraordinarily difficult time getting their doctors and families to take their symptoms seriously. They often go through a prolonged ordeal of being told by several doctors that they have anxiety or depression or some sort of conversion reaction rather than a true, physiologic condition. It is often weeks or months, and occasionally years, before some physician finally figures out the true diagnosis.And now, even after the correct diagnosis is made, they face the prospect of being regarded as having brought the condition on themselves, due to 'deconditioning,' which is often medical talk for being too sedentary, passive, and lazy. And when their family is told that the problem is self-induced, via the mechanism of sloth, and is told this by a doctor no less, the amount of support POTS sufferers are likely to receive from loved ones, at the very time they are fighting to recover and are most in need of it, will predictably diminish. So the hue and cry from POTS sufferers when this article was published is quite easy to explain." -You can read more about the controversy here.
    Also, you can read Dr. Levine's article that started this controversy here.
     

  • Thankfully, research has since challenged and proved Dr. Levine's original theory false (as mentioned in the beginning of this blog post). The problem with the above study was mostly due to media misinterpretation of correlative results, which is usually what happens with medical studies (click-bait that oversimplifies the real issue). However, his article did state "that exercise training improves this syndrome" here. That statement has been inappropriately used against POTS patients. What his study did find, however, is that "ten of 19 patients no longer met POTS criteria after training, whereas patient quality of life assessed by the 36-item Short-Form Health Survey was improved in all patients after training."

    Dr. Levine has responded to the controversy here by explaining how POTS patients are the farthest thing from lazy and that exercise helps with deconditioning symptoms and alleviates some POTS symptoms but that deconditioning isn't the cause, and reconditioning therefore not the cure of POTS.

 

FAQ

 

1. How do you get Dr. Levine's exercise program?

Ask your doctor to e-mail THRIEEMPOTSRegistry@TexasHealth.org to request the program. Anyone, from anywhere, with a POTS diagnosis can request the program for free.

2. Do you need to see Dr. Levine in person to get the program?

No. His clinic is based in Dallas, Texas but you do not need to go there to do his program. 

3. Did you do the program with a physiotherapist?
No. However, I did part of the program through cardiac rehab.

4. How long did it take for you to see the benefits of exercising with POTS?
I slowly made improvements in the amount of things I could do in a day (sitting up longer, then being able to stand, then being able to go out once a day, etc.) after just a week of exercising. With each increase in the amount of exercise I did, I also noticed increases in how much I could do in a day. This was huge because being bedridden is a mentally torturous experience. Exercise helped me start to leave the house again. However, I didn't notice any drastic improvements in how I felt (as opposed to what I could do) for almost a year (granted, I did the program very slowly).

5. What symptoms of yours improved with exercise?
I'm able to do more (I can now drive, walk my dog 20 minutes multiple times a day, sit up all day long, stand still for 10 minutes comfortably most days, go to school, etc.), my tachycardia has stabilized (I still have tachycardia when not taking a heart med, but on a heart med I no longer have random bursts in tachycardia, or sporadic unpredictable tachycardia), my blood pressure is a bit more stabilized, my fatigue and brain fog have improved, my shortness of breath went from one of my most debilitating symptoms to almost nonexistent, and my pain is more manageable. 

6. What kind of recumbent bike do you have?

The company is called "bodybreak." It's just a plain recumbent bike (not to be confused with an upright stationary bike) that used to be my mom's.

7. Do you recommend purchasing pedals if you don't have the money for a recumbent bike?
My mom bought me pedals off of Amazon when I first started my personally-designed "exercise program" and I appreciated used them a number a times but they were better in theory unfortunately. I found that they're not heavy and stable enough to support my hypermobile joints. When you pedal, the small machine often lifts up off the ground or you find yourself in an awkward position compensating with your muscles and joints to try to ensure that the pedals don't lift off of the ground. 
8. Do you go to a gym?
There is a gym in my apartment that I sometimes go to but besides cardiac rehab for 4 months, and the occasional time I go to the gym downstairs, I do the majority of my exercises inside my apartment. 

9. How do I know if I've pushed myself too hard or if I'm just experiencing temporary symptoms from starting exercising?

This is a great question. At first, you won't know, and it'll feel scary and uncomfortable. As humans, we naturally like to be in control and POTS already takes so much of our control away from us that the idea of willingly going forward with something that'll temporarily hurt our symptoms (and we can't predict how we'll feel) sounds terrifying. I highly recommend that you think of what you can do: let's say it's go on a recumbent bike for 1 minute. Do it for 30 seconds. You'll be tempted to go for 1 minute but don't. Start with a lot less than you think yo're capable of doing. Do it for a week, see how you feel, and then slowly increase it. Your symptoms will flare a bit, and that's to be expected, but if you're feeling like you have to recover for days then you might want to dial it back a bit. You'll start to find the right pace for you. As you exercise more, it'll be a learning experience as you become more in tune with your body. Before i started exercising, and during the first 6 months of exercising, I checked my HR and BP constantly to see if I should up or decrease a medication. Now I can tell what my HR and BP are without checking.

10. I feel so overwhelmed because I'm so weak and tired and don't even know where to begin. What do you recommend?
To go off the last point, I'd recommend that you set a goal for yourself that you find ridiculously easy and know you can do it. If you set a goal that's too difficult right off the bat, and then push yourself into a flare, you'll be too discouraged to continue. If you think you can walk or do calf raises for 1 minute, do 30 seconds a day. Use a journal, or an app, or your phone's memopad to keep yourself accountable. Then the next week slowly increase it. Always, always, always progress slowly with POTS. I'd also recommend creating a vision board for yourself with inspirational quotes and pictures that help you stay motivated and put it beside where you exercise. If you have a yoga mat, put your vision board there and keep your journal and pen there so you can mark every time you go there to do leg raises or whatever your goal is. You don't need to look at Dr. Levine's overwhelming protocol, you don't have to think about the next year, you just have to think about showing up and doing 1 small thing today to keep your body moving. One thing that has also helped me is the realization that exercise is part of self-care, not our self-worth. I used to think of self-care as binging on Netflix after a hard day, and it can be, but self-care is also doing something that your future self will than you for. And I can promise you that your future self will thank you for this.

11. Do you have any other tips for exercising with POTS?
4 things helped me, and carried me, through the difficult journey of getting reconditioned with POTS:
-Biofeedback: it DRASTICALLY reduced my shortness of breath post-exercise and helped me recover in half the amount of time (to see more about my experience with Biofeedback you can check out this blog post).
-Mullein tea: a herbal teal (it also comes in capsules but I personally found the tea more helpful) that helps asthma and upper respiratory infections. Mullein tea helped my shortness of breath (which was so severe it would hospitalize me) significantly when reconditioning (to the point that my mom would automatically bring it to me every time she saw me on the recumbent bike).
-An oxygen machine. After my one-month hospital stay that started off with me having difficulties breathing after trying Lyrica (for nerve pain), I asked my mom if we could get an oxygen machine. We asked a doctor int he ER who was understandably very hesitant about the idea. My blood oxygen levels were often fine (not always though) but I would experience severe air hunger or shortness of breath. If you're on oxygen when your blood oxygen levels are fine, there's a danger of experiencing "over oxygenated blood." My mom found a used machine that didn't administer pure oxygen. We bought it because I ended up in the ER on more than 10 occasions because a medication would make my shortness of breath excruciating and the ER wouldn't do anything besides temporarily put me on oxygen and tell me not to take the medication again. The oxygen made it so I wouldn't have as much fear when trying new medications and I also used it short-term when I first started reconditioning. I no longer use the machine (I've used it once in the past couple of years) but like having it in my apartment in case of emergencies. 

-Compression tights. Exercising has always been so much more bearable for me when wearing compression tights or socks. 

 

 

 

Further Resources:

 

1. CHOP Exercise Protocol for POTS

2. A list of medical articles about exercise & POTS on "Standing Up to POTS'" website.

3. Tips on exercising with POTS on "Standing Up to POTS" website

4. Reclined, chair, and pool exercises from Dysautonomia International.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Every time I'm in a flare and think I'll never get better, I like to remind myself how far I've come. I didn't notice any progress during my exercise program, yet, each week I continued to drastically improve. When you're in the midst of the suffering, you can't see anything besides your suffering. You can't see the tiny ways in which your determination is pushing you in the right direction. I am where I am today because of tiny steps in the right direction that seemed to have no real impact when they were being done, but looking back, it's the only reason I've been able to get this far.

 

 

What has been your experience with exercising with POTS? I'd love to hear from you! Leave a comment below with your experience.

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