The Texas POTS Center: My experience
The POTS Treatment Center uses HeartMath's EmWave Pro program. However, I have experience with all 3 of the programs they sell: the EmWave2, the EmWave Pro, and their Inner Balance smartphone technology. I will be reviewing all of HeartMath's programs throughout this post. HeartMath was NOT designed with POTS or other Dysautonomia conditions in mind. The founder of HeartMath has a PhD in Psychology and designed his program with anxiety and chronic pain patients in mind.
In March 2015 I flew from BC, Canada to Dallas, Texas to what's known as the "POTS Treatment Center" to receive treatment approximately one year after developing POTS. Overall, I had a very positive experience but it was in no way a cure or a treatment sufficient in and of itself. I am extremely grateful to Dr. K and the POTS Treatment Center for giving me another tool in my toolkit for managing POTS. I am also eternally grateful to my parents for encouraging me, and paying for me, to go to the POTS Treatment Center. Today I'm going to share the great, the bad, and the questionable parts of my experience with the POTS Treatment Center.
From the day I got sick my mom and I became part-time researchers. This didn't stop the day I was diagnosed with POTS, in fact it just got far more specific. When we were awake we were on Facebook support groups, reading medical articles, and blog posts from patients' experiences desperate to find anything that would work. Early on in our search we came across what's called the "POTS Treatment Center" in Dallas, Texas. Reviews of this center were generally positive but definitely all over the map so we decided to place that option high up on a shelf, especially since I was in no condition to fly. However, my mom bought me the "EmWave 2" program from HeartMath when she learned that HeartMath was the program used at the POTS Treatment Center.
The EmWave2 is a handheld biofeedback device that hooks up to your ear to detect your heart rate. This program also has an option to use when hooked up to the computer but I found it too complicated to use initially. In fact, when I initially opened up the packaging and program for the EmWave2 program I was so overwhelmed I didn't even use it that day. However, watching a couple YouTube videos, I started to get the hang of it. I ended up using my EmWave2 handheld biofeedback machine multiple times a day for 6 months. It helped me specifically to move from one place to another with minimal shortness of breath when I was bedridden and when I was housebound.
Then one day around 1 year after developing POTS, I was having one of my usual heartbroken conversations with my mom about how desperate I was for relief and how Florinef (a medication I was truly counting on to relieve any symptoms) completely disappointed me. I was so fed up and felt hopeless. This was when my mom suggested that maybe it was time to go to the POTS Treatment Center. When she suggested this, I felt excited but also a lot of guilt because I knew that it would be expensive. $15K kind of expensive. But I would've given an a n y t h i n g for any kind of relief. That day my mom and I decided to start researching the POTS Treatment Center and Biofeedback for the treatment of POTS. I started realizing how much the EmWave 2 program was helping me so I thought "maybe this POTS center will really help me too."
Through my research I came to the understanding that: biofeedback has a lot of evidence for treating a variety of conditions. this POTS Treatment Center specifically helped many POTS patients gain back any quality of life (some a lot more than others), but biofeedback isn't a cure for POTS. I also became concerned about the POTS Treatment Center's lack of follow-up studies.
One woman on a POTS Facebook support group specifically encouraged me to go as her condition was very severe prior to going and was able to go back to work full-time as an EMT after the POTS Treatment Center. I am still in contact with this woman who went to the POTS Treatment Center years before me (so as of now it's been at least 5 years since she's been there) and she is still thriving as an EMT, mother, and person. Those kinds of results are ones you just can't ignore. The possibility of gaining any of my old quality of life back was good enough for me. However, that's because my family was financially equipped enough to send me (there were less cons if I were to choose to go).
My mom did all the communication with "Dr. K" (the main doctor at the POTS Treatment Center) before I went- in fact, she made all of the arrangements and I had no idea what to expect in a day-to-day sense while at the treatment center. I was still quite disabled and bedridden/housebound and my brain fog was too severe to be fully mentally present. My mom could not bring me to the treatment center so she paid for both my ex and I to go. I was incredibly worried about this because my mom was my "safe person" who I was around practically 24/7 since being sick.
My first day there
I arrived in Texas a day before my first appointment so I had time to recover from the trip over (which wasn't too bad). On my first appointment day my ex wheeled me into the office building where the POTS Treatment Center is located. As I sat in the waiting room I felt more at home and understood than anywhere I've ever been before and since. On the wall there was a map of the United States showing that showed where patients have come from to seek treatment. Beside me there was a patient testimony binder which I read every day I was there. I loved reading the personal stories of each patient and I loved how hopeful their successes made me. I kind of thought that biofeedback would be more helpful in more mild cases, yenno, the kind that don't require medication or very little, or the kind that don't have a laundry list of co-morbid conditions under their belt, but that binder of testimonies proved me wrong. I remember reading about this one woman who drove a long distance to get to the treatment center but her POTS rendered her so incapacitated that she relied on oxygen to prevent her constant seizures. This woman's mom would have to drive to the side of the road to plug in their oxygen tank at a gas station when her potsie daughter was having seizures. Then, at the end of the 2 week POTS Treatment Center program, she was relieved of all seizures. Wow! As anyone with POTS knows, reading a story like that brings an overwhelming sense of hope, I mean, it's what we all want. Relief. Relief of any symptoms. So if you have the money, you know damn well that you couldn't read something like that and not want to dish it all out for even the slightest possibility that you might be like that one woman.
However, one serious issue I have with the POTS Treatment Center is their lack of follow-up standardized testing and publication of those results. I'll get to this more later.
Anyway, the first visit was a short one in which they handed us a bunch of informational sheets about POTS, the autonomic nervous system, and their program. I found these sheets helpful, but for the most part I already knew everything that was being taught. I was joined with a woman (with POTS) in her early 30s who travelled with her sister. This woman had kids who were back at home with her husband and this Potsie had a Go Fund Me page set up because of the financial burden this treatment would be. I was also joined with a teenage boy with POTS who had already been diagnosed and treated at the Mayo Clinic. He was accompanied by his sweet mom who had Lupus. I would see these two patients on and off while one of us was coming and the other was going to our daily appointments as we were all on the same 2-week schedule. There were also some other people coming and going for 1 day appointments (who lived nearby) and for a followup months after the 2-week program (which they recommend but I did not do).
The rest of this first appointment was spent teaching us how to use the HeartMath program. Dr. K, the main doctor there, did not mention the program by name which I found odd. I truly think she didn't want the name of the program "getting out there" (whether consciously thinking this or not) and having people realize they can purchase the program and do it from home. I told her that I already had a version of the program though and so she thought it would be interesting to see how I enjoyed the POTS Treatment Center considering I already owned the program. I found that interesting, like she was open to criticism- open to seeing if her program would be better than just using the HeartMath program at home, or not.
But then she said something that was a HUGE red flag. After explaining the program she said, "some people online haven't had some nice things to say about this program. But I think some people are so used to being sick that they don't want to get better. They don't know any different."
W h a t.
If your treatment is legit it'll work "whether or not we want to get better". If you stab me, my body's not going to heal itself because I'm thinking positive thoughts and thinking "I really want to get better though and believe I will!" Nice try.
There's a reason scientists have to establish whether the effects of a treatment are caused by a placebo effect (the expectations, hope, and belief we have that the treatment will, in fact, work) or the actual treatment itself.
Unfortunately I was too shocked by Dr. K's comment that I didn't even speak up. She went onto the next topic while I was thinking about my two favourite POTS bloggers who openly, honestly, and vulnerably shared on their blogs how they experienced no long-term benefits from the POTS Treatment Center whatsoever. Dr. K may not have been talking about either of them personally, but she was victim-blaming some POTS patients in front of other POTS patients at her POTS Treatment Center and I wasn't okay with that. However, I brushed it off because at that point, in March 2015, I only had very negative and mostly negative experiences with doctors and the fact that she knew what POTS was, and genuinely wanted to help me, was huge. Even though, from what I realized throughout the next 2 weeks, she still didn't know as much about POTS as I did and wasn't very up-to-date with current POTS research.
However, even after reading many bloggers' valid critiques of the POTS Treatment Center beforehand I still decided to go to the POTS Treatment Center. Why? I knew it might not work at all, but I also had hope that it might because I do understand the complex benefits Biofeedback often has on overall health and well-being. I was also financially equipped enough to take the risk.
The appeal of this treatment option to me, and to most, was the fact that there is no physical or emotional risk when trying Biofeedback. Unlike Pharmaceutical options that pose serious health risks, especially when you're hypersensitive to medications like me, Biofeedback is as risk-free as it comes.
So what is biofeedback?
I think the POTS Treatment Center's sheets explain it best.
In other words, Biofeedback is a breathing technique that when practiced frequently can help calm the nervous system, regulate breathing, and promote health.
Why/how would Biofeedback help POTS?
Again, I think these sheets I received from the POTS Treatment Center will help explain best.
Biofeedback is an overall efficacious treatment option for overall health. However, it has not reached evidence-based medicine (pharmacology) or evidence-based practice (psychology) standards for it to be considered an efficacious treatment for the use of patients with POTS. There is just not enough research published on this issue at this time and results have not been consistent or predictable.
Now that we have established this, we can agree that the POTS Treatment Center cannot suggest that their program offers a cure for POTS (which I haven't heard them say explicitly but they definitely suggest it), however, research does reveal how Biofeedback can help balance out the nervous system.
Okay that's great, but I still don't get it..
I didn't fully either until I was at the POTS Treatment Center. I only had POTS for around a year when I went to the POTS Treatment Center but I was already quite up-to-date on all things POTS but Biofeedback lingo was not a part of my vocabulary.
Basically this program teaches you to take deep belly (diaphragmic) breaths that occur at a healthy rate in accordance with your heart rate. According to Dr. K, most healthy people do this naturally while people with POTS are in a unique state of hyperventilation.
If you want to do a quick check to see whether or not you breath with your diaphragm place one hand on your stomach and one hand on your chest then take a deep breath. When you inhale, what goes out, your belly or your chest? Ideally your chest is supposed to stay the same when you inhale but your belly should distend thus breathing deeply with your diaphragm instead of shallowly with your chest.
I remember learning this back in a Psychology class and had been trying to be more intentional about practice diaphragmic breathing at home with my EmWave2 before travelling to the POTS Treatment Center but noticed that I only did it while using the program. Then I would naturally return to my usual "chest breathing."
However, it's not as simple as learning to belly breath, it's about the state in which your body switches to the "rest and digest" function of the autonomic nervous system when practicing Biofeedback (with any program, not necessarily just HeartMath's programs). You see, our autonomic nervous system has 2 functions: "rest and digest" performed by the Parasympathetic nervous system and "fight or flight" performed by the Sympathetic nervous system. The Sympathetic nervous system is supposed to kick in when a threat is perceived, thus using all of its energy up toward fighting off the threat or fleeing away from the threat. When we are not in a threatening situation, our autonomic nervous system should be functioning in the Parasympathetic nervous system that allows the blood to circulate properly throughout the body, the body to rest and heal itself, and allows the digestive system to function properly. However, with POTS it has been theorized (and current evidence has supported this) that our autonomic nervous system is stuck in the Sympathetic nervous system or "fight or flight" mode. It has also been theorized that panic attacks occur as a result of the body's nervous system switching to the Sympathetic nervous system at unnecessary times which is why symptoms of anxiety and POTS are sometimes confused.
Diaphragmic breathing naturally brings the body back to the parasympathetic nervous system.
Image from The POTS Treatment Center's website.
So that's the Science behind it, but what does this mean in a practical, every day way? What does the program look like and how does it work?
First, so you have an idea of what is on the screen when you're doing biofeedback at the POTS Treatment Center and at home, here are two images. The left is a picture of my heart rate, heart rate variability, and coherence levels and the right is the same while I'm on a recumbent bike at the POTS Treatment Center. The big number in white on the blue background is my heart rate and what looks like an EKG is my heart rate. In the image on the right you can see that my heart rate doesn't look as stable, it looks kind of shakey, and that's because of my heart-rate variability (I'll explain more about what that is below). The 3 bars on the bottom right show my "coherence levels" (I'll explain more below): green is high coherence, blue is medium coherence, and red is poor coherence. The numbers beside each bar show the percentage of time I spent in each coherence level during that Biofeedback session. As you an tell, whether or not you understand what I'm talking about yet, the image on the right looks a lot less stable and that's because I was on a recumbent bike (going very slowly) while on the left I was sitting in a reclined chair. The image on the right helps show the exercise intolerance in people with POTS.
When looking up HeartMath's programs or checking out the POTS Treatment Center's website you will come across these 2 fancy terms:
Coherence: "Physiologically, the coherence state is marked by the development of a smooth, sine-wave-like pattern in the heart rate variability trace. This characteristic pattern, called heart rhythm coherence, is the primary indicator of the psychophysiological coherence state, and is what the emWave and Inner Balance technologies measure and quantify. A number of important physiological changes occur during coherence. The two branches of the ANS synchronize with one another, and there is an overall shift in autonomic balance toward increased parasympathetic activity. There is also increased physiological entrainment—a number of different bodily systems synchronize to the rhythm generated by the heart (see figure below). Finally, there is increased synchronization between the activity of the heart and brain" -as defined on HeartMath's website.
Heart Rate Variability: "a measure of the beat-to-beat changes in heart rate. This diagram shows three heartbeats recorded on an electrocardiogram (ECG). Note that variation in the time interval between consecutive heartbeats, giving a different heart rate (in beats per minute) for each interbeat interval.The normal variability in heart rate is due to the synergistic action of the two branches of the autonomic nervous system (ANS)—the part of the nervous system that regulates most of the body’s internal functions. The sympathetic nerves act to accelerate heart rate, while the parasympathetic (vagus) nerves slow it down. The sympathetic and parasympathetic branches of the ANS are continually interacting to maintain cardiovascular activity in its optimal range and to permit appropriate reactions to changing external and internal conditions. The analysis of HRV therefore serves as a dynamic window into the function and balance of the autonomic nervous system.The moment-to-moment variations in heart rate are generally overlooked when average heart rate is measured (for example, when your doctor takes your pulse over a certain period of time and calculates that your heart is beating at, say, 70 beats per minute). However, the emWave and Inner Balance technologies allows you to observe your heart’s changing rhythms in real time. Using your pulse data, it provides a picture of your HRV—plotting the natural increases and decreases in your heart rate occurring on a continual basis" -defined by HeartMath's website.
What was your experience like? Was it just Biofeedback?
If you are travelling to the POTS Treatment Center you can expect to be there for 2 weeks with appointments from Monday-Friday each week. You will receive a copy of the EmWave Pro program for your computer and this other handheld program that measures the temperature of our fingers. This handheld program does not appear to be affiliated with the HeartMath program whatsoever. It's a small and simple handheld device with a long wire attached to it that you tape to your finger and it tells you a reading. Apparently it's impossible to get a typical migraine if your peripheral temperature is above 90 degrees F and this handheld device will tell you what your peripheral temperature is. As I go into below, a normal peripheral temperature would be around 96-97 but mine was at 82 on my first day at the treatment center. This is apparently common for people with POTS and I found this quite intriguing sine my hands never used to feel cold. Through using biofeedback, your peripheral temperature increases because Biofeedback helps your body "rest and digest" (as talked about above) in the Parasympathetic nervous system. As stated above, those with POTS are often stuck in the "fight or flight" mode of the Sympathetic nervous system which stops proper circulation because it focuses only on fueling you up to run or flee from a threat. In "rest and digest" mode your circulation improves and thus, so does your peripheral temperature.
I seriously question Dr. K's original comment to me about how it's impossible to get a migraine if your peripheral temperature is above 90, and her other comment about how she has a 99% success rate at curing all migraines (again with that C word Dr. K) as I don't think she has standardized follow-up studies for most of her out-of-town patients (she doesn't for me at least). However, I did notice that as I improved my peripheral temperature my migraines DID improve. Sometimes, especially in the beginning, they were still there but drastically improved. At the end of the 2 weeks I had a huge reduction in frequency and intensity of my migraines.
Anyway, each day you would go into the office to have an appointment with Dr. K, use the EmWave Pro program and the handheld temperature monitor, have an appointment with Dr. K and go back to your hotel. They also offer counselling services for the stress POTS causes and I saw this counsellor once. I think appointments were around 2 hours long if my memory serves me correctly, but this was back in 2015.
You were in a office room alone in a reclining chair with a blanket when you were doing the biofeedback. For around 3 days near the end of the 2 days she taught us how to do the EmWave Pro program while standing and while on a recumbent bike. Both of these were very helpful for me. Using the biofeedback machine while sitting and continuing to transition from sitting to standing did help reduce lightheadedness immediately upon standing. In addition, I found using the EmWave Pro program while exercising helpful for me. I would use the EmWave 2 program to recover after going on the recumbent bike at home and it significantly (by hours) decreased the time it took me to recover from exercising. However, I never thought to do it while exercising with POTS. I didn't transfer this skill over into my daily routine when I got home because it's very impractical to have your desktop computer in front of you on a recumbent bike. I tried it with my EmWave 2 program (the handheld device) a few times but unfortunately it slowly started to lag and became useless as a result. If a biofeedback machine is lagging it's not telling you when to inhale and exhale at the right time which makes it ineffective. Unfortunately I hadn't even had my EmWave2 machine for a year when it started doing this and talking with customer service did no good. Now I have HeartMath's inner balance smartphone program to complete my collection haha. This is great to use while exercising!
Some other lifestyle management recommendations from Dr. K:
-She recommended the use of this Spark energy drink (pictured below) for those suffering with severe fatigue. She recommends 1 serving a day for most people with POST but recommended 2 servings a day for me because of how debilitating my fatigue was. This helped a bit with my brain fog and fatigue and because it's mixed in with a full water bottle of water, it's less dehydrating than coffee.
-This raw prenatal vitamin. I stopped taking it after a while because I don't like taking multi-vitamins since I take so many specific vitamins and I don't want to consume too much. However, this is one of the most reputable vitamin companies. I think I got it from Whole Foods.
-Biogest for digestive issues with POTS. My digestive issues are mild on most days so I didn't end up continuing to take it but I've heard it's also good for IBS.
-(Not pictured below) black pepper extract supplements with curcumin for pain. I think these were also from Whole Foods. I didn't notice a huge difference in pain by taking these supplements but it also helps with inflammation overall.
-She had us go on a gluten-free diet. I do not have gluten sensitivity but I still eat mostly gluten-free because I eat a diet aimed at reducing inflammation in my body.
-She also recommended that we drink from glass water bottles because of the chemicals in plastic. I had been well-versed about the data showing these chemicals in our bodies as a result of plastic water bottles but I dropped my only glass water bottle at the time and broke it (it had a rubber protective case too). I still mostly use plastic water bottles because of my tendency to drop things but I do have a couple glass water bottles.
-(Not pictured below) the other woman with POTS who was a patient during the 2-week program was on her period for part of the POTS program (they recommend not travelling to the center when you're on your period if you can help it because of how symptomatic some of us get during this time) and Dr. K apparently recommended primrose evening oil supplements for her. This woman was also recommended the Raw prenatal vitamins, the black pepper extract supplements, and 1 scoop of Spark energy drink a day.
How did the POTS Treatment Center help you?
In preparation for this blog post, I went back to an old Facebook group I created back in 2014 to keep my friends and family members updated about my health. I found a post I wrote from during the POTS Treatment Center that sums up my personal experience at the program:
"Sorry for not updating about Texas yet! Overall, it's been an amazing experience and I'm so grateful that my family has financially provided me with this expensive treatment. Here are some updates:
-The doctors here are extremely empathetic, kind, and knowledgeable. There are fresh flowers in each room every day, you sit in big reclining chairs with blankets, there are motivational quotes in each room and there's a big book of testimonies in the waiting room. -I met a few patients with POTS!! It is so cool to do so because you have an instant connection.
-I had a severe allergic reaction to shrimp on Sunday [not anaphylactic and avoided going to a hospital] and am still having troubles breathing because of it. I've had shrimp tons before in my life but randomly had this allergic reaction. Turns out I have Mast Cell Activation Disorder (often co-morbid with POTS & EDS; I bet in the future they'll found out that it's 1 thing wrong with your body that causes all of these). [Dr. K was the first to officially diagnose me with MCAD] It means you're allergic to the universe practically. It makes sense because I have allergic reactions to random things all the time, including a muscle roller [my ex] bought once. It's also why I have terrible reactions to medications. So NO MORE shelfish for me (I love shrimp more than life itself). I'm going to be sticking to a low-histamine diet and will be on meds for this [Dr. K did not prescribe the meds herself and I heard of MCAD and tried a low-histamine diet out once before for a few months before going to the treatment center.].
-I've seen quicker improvements in my symptoms during these 2 weeks than I have in months with any other doctor (I don't want to leave this place! I can't believe my last day of treatment is on Friday). I've been able to survive on just 8 hours of sleep, and for the first time EVER on Monday I didn't have a headache. I have had a headache every single day of my life since grade 8. I have a baseline head pain that will get worse for no reason sometimes or if I have a trigger. A constant headache. But the baseline went away. [It never fully returned. I'm just realizing this as I write this. Wow!]
-Dr. K has a 99% success rate with CURING migraines (since migraines are a circulation problem, which is why people with migraines are more likely to have strokes). It's physically impossible to have a migraine if your peripheral temperature is above 90 degrees constantly and you can slowly can slowly train your body to be above 90 degrees. You're supposed to be around 96-97 degrees and when I got in there my peripheral temperature was 82 degrees (like many people with chronic illnesses) even though my hands don't ever feel cold. I have now gotten it up to 94 sometimes!
-I am now on an energy drink (that's pure vitamins besides 1 artificial flavour ingredient) 2x a day plus my med I'm on just to keep me awake throughout the day [Modafinil]. I find that this energy drink doesn't dehydrate me like coffee did (I went off of coffee for around 6 months when I first got sick, but fatigue was my worst symptom). I can't be dehydrated because I'm hypovelimic (low blood volume).
-I'm now gluten-free 80% of the time. I should be 100% of the time but it's hard to accommodate a pescetarian, low-histamine, gluten-free diet (I also try to avoid dairy, can't eat grapefruit because it interacts with medication, and am super sensitive to bananas and eggs). I went off gluten for a few months when I first got sick and I didn't notice a difference in symptoms so I started eating it again. But gluten builds up in your system over time, just like dairy, so symptoms (for those who don't have celiac disease) don't necessarily show up from eating gluten a couple times. Dr. K got me to read a ton of stuff about gluten-free diets and how they're beneficial for brain health. I know everyone on Facebook read that 1 popular article about how gluten sensitivities do't exist and now they think they're nutritional experts (lol) but inflammation is never good for your body sooooo.
Here are some pictures from my journey so far :). The HR monitor shows my HR variability & coherence levels when sitting normally (which are pretty good on the lowest level since I've been learning skills) and then when I'm exercising extremely slowly (which shows it all over the place all of a sudden which shows why people with POTS have exercise intolerance)."
So as you can see, the POTS Treatment Center did help me. It did help with my quality of life and it did give me some tools to help with some of my POTS symptoms. This POTS Treatment Center also made me feel more hopeful in those 2 weeks than I had in over a year and that alone was so life-giving for me. I was pushed into the POTS Treatment Center in a wheelchair and left walking out on my own. My medication stabilized me and I don't think I would have made this much progress or have any quality of life without it, but it was biofeedback and Dr. Levine's exercise protocol that drastically increased how much I was capable of doing in a day.
However, I haven't been able to go off any of my medication since the POTS Treatment Center and am well aware of its limitations.
How The POTS Treatment Center helped me long-term:
-I still don't have a constant, baseline headache.
-I don't get migraines neeearly as much as I used to. Before developing POTS I had a migraine for a couple hours every single day. Then once I was on my meds for POTS they indirectly helped my migraines a bit but I still had multiple a week. They went down to 1x a week or 1 every 2 weeks.
-Using this tool was the beginning of me being able to increase how much I was capable of doing (with the help of Dr. Levine's POTS Exercise Protocol as well). Finding the right combination of medication helped stabilize me but I was deconditioned and bedridden/housebound and would have stayed mostly housebound/bedridden if it wasn't for biofeedback and Dr. Levine's POTS Exercise Protocol. I definitely wouldn't be in school if it weren't for those two interventions.
-It helped so much with my shortness of breath. This benefit was noticed before I even went to the POTS Treatment Center and was just using my handheld EmWave 2 program at home. It helped especially in the process of becoming more reconditioned. The amount of time I spent trembling, fainting, lightheaded, and extremely short of breath when recovering from exercise decreased significantly both in intensity of symptoms and duration (half as bad and half as long at least). I'm not sure if I could've survived the process of becoming reconditioned if it weren't for this program. It helped me so much that before I went to The POTS Treatment Center and was using my EmWave 2 device daily, I left it at my mom's beach condo (her retirement place) and cried and freaked out at the possibility of oging without it.
-The Spark energy drink continues to help me with fatigue and brain fog.
-IT HELPED ME SO MUCH WITH INSOMNIA! I haven't been using this program as much as I should be but during the 6 months after the POTS Treatment Center I would only have insomnia (something that plagued me before the POTS Treatment Center) if I didn't use my program that day.
It's impossible to say if I'd think this was enough of a benefit to dish out my own $15K and deal with the intense stress of that financial burden. But with my financial situation, and my state at the time, flying to the POTS Treatment Center was well worth my time. Any relief is relief.
What were the cons of the treatment center?
1. Both I (as a Canadian citizen) and American citizens have to pay a hefty price out of pocket because their center does not accept insurance. The other POTS patient who was there at the program during the same time I was had to set up a Go Fund Me account to afford it. This woman was recently diagnosed and absolutely desperate for help. It didn't seem like she did a ton of research on the program before coming but was very hopeful. Dishing out this kind of money was extremely hard on her and her family and the additional stress it put on her made it so her kids and her had to live in a motel for a while after. I'm not sure if she would think spending that kind of money was worth it in her situation but I do know that she experienced mild to moderate improvements from the treatment.
2. Dr. K (along with many doctors) is biased about her program and the research currently doesn't support her claims for the use of POTS (no longitudinal, replicated data) . This was my first experience with American healthcare and it was incredibly eye-opening. I realized how much American healthcare is like a business and how Doctors have to push their "products" in a way that isn't financially encouraged in Canada. Dr. K, like all doctors, won't get patients for promoting her treatment center as one that "often works, but not always long-term, and sometimes it doesn't work." Her income and the success of her practice requires us to have a positive experience. In some ways this is a good thing for us Potsies because she has external motivation to help us. However, it also has her, and all American doctors alike, stretching the reliability and validity of treatment options they're personally invested in.
3. She thinks that those who didn't personally have their lives changed because of her treatment center "don't want to get better."
4. Biofeedback is the main form of treatment offered at the POTS Treatment Center and often patients don't completely realize this before going in. This is mostly because on the POTS Treatment Center's website they list a bunch of "treatment options" that are different words to describe biofeedback and this can be misleading. Below is a screenshot of the treatment options listed on the POTS Treatment Center. "Biofeedback," "Heart Rate Regulation," and "Relaxation Training" are all one thing, from my experience. Although I'm sure Dr. K has different intentions behind each, they all consisted of using the same program and the same handheld temperature monitor device. In addition, "nutrition," "suggested vitamins and supplements," and "lifestyle management" were all 1 appointment in which she recommended almost all of us the same options, "sleep recommendations" were not given unless she counts 1 sheet of paper with tips to take magnesium or drink warm milk before bed. And "coping skills," "stress management," and "counseling to address any anxiety or depression due to POTS" were all one thing summed up in one appointment with a counsellor and half of an appointment with Dr. K. The "exercise protocol" was implemented near the end of the program for a couple days and it consisted of going on the recumbent bike while using HeartMath's EmWave Pro program. I found this very beneficial but only did it twice or three times.
So as you can see, POTS Treatment Center is almost exclusively dedicated to Biofeedback and many patients have said the treatment is not individualized. I found it pretty individualized for me but I could see how someone might say this because no two potsies are alike.
5. A lot of red flags went off for me during the end of the program. For one, she thought I would be able to go off all of my medications because my coherence scores were in the 90s and 100% most of the time. I felt like my coherence scores didn't match up with my symptoms. However, apparently most healthy people are in a high coherence level 100% of the time while POTSies are often rarely in this high coherence. Once I walked into a room where another Potsie who was in town for her follow-up appointment (recommended months after the initial 2-week visit) she was in high coherence only 60% of the time. So Dr. K thought I was cured when my coherence levels were in the green 100% of the time. So much in fact that on my last day she brought in an internal medicine doctor to start talking to me about going off all of my medication. Thankfully I listened to my body and not either of them. The internal medicine doctor didn't seem to know anything about the program either. To touch more on my high coherence levels: I think I've trained my body to be able to stay in high coherence levels while using this program but that my body, for the most part, resorts back to low coherence when I'm not using the program. To test this I fell asleep doing biofeedback at home a couple times so I could see my coherence levels when I woke up. The POTS Treatment center had it so my session automatically ended after 20 minutes so when I woke up the next day my coherence had already dropped to 50something% after being asleep for 10 minutes. So even in my most relaxed state, I wasn't in a high level of coherence. I also tested her theory that healthy people are generally in the high coherence levels while doing this program with my family members and boyfriend at the time and it seems she was right for the most part about this. However, I think it would've been extremely detrimental if I listened to Dr. K and the Internal Medicine Doctor's advice about going off of my medication.
6. On the second last day of the POTS Treatment Center she asked me to do a video testimony of my experiences the next day. I was excited that she wanted me to as I had seen the videos on her website and YouTube prior to going to the POTS Treatment Center. However, after I went back to my hotel on the second to last day I experienced SEVERE allergies for the first time in my life (thanks Texas!). I had a migraine and felt swollen to the touch almost. The secretary at the POTS Treatment Center said this is common in Texas (I haven't experienced anything like it since). Anyway, on the last day of the POTS Treatment Center I was still feeling awful and after Dr. K asked me how I was doing she said "Well I can't control your allergies" in a very condescending way. As if she was mad that I would be messing with her statistics (she asked us to rate our symptoms on this huge list each day at the treatment center). She never talked about the testimonial video after that so I didn't do one.
7. I saw a woman who was doing a 6-month follow up after the POTS Treatment Center who did so well during the program and had a testimonial video on the POTS Treatment Center's website. I saw her the second I met her but she wasn't doing nearly as well as the video portrayed. When she was inside the appointment her mom told me a lot about her story. She said on the way back from the original 2-week program that her daughter voiced how she thinks she may have unintentionally overexaggerated her positive experiences from the POTS Treatment Center and that she felt bad about it. She said she was just answering questions Dr. K asked which gave no room for her to say the symptoms she was still struggling with. She also felt a bit pressured to respond in a certain way even though she was feeling very optimistic and hopeful about the long-term effects. Unfortunately when she came home the improvements were minimal and short-lived. I'm not sure how many of the patients on these testimonial videos felt the same way.
Overall, I think POTS blogger Ilana Jacqueline and all other published personal experiences from the POTS Treatment Center are valid, accurate, and portray all sides of the POTS Treatment Center. Ilana Jacqueline in particular does a great job at accurately explaining the cons of the POTS treatment center here.
Would you recommend the POTS Treatment Center to others?
Yes, I would recommend the POTS Treatment Center to others but would encourage you to do your own research before making this decision. If travelling to and paying for treatment at the POTS Treatment Center will put you and your family in a serious financial debt then that will add both external and internal stress to your body in an already vulnerable time. You need to weigh the risks and benefits for your own self in your own situation. Ask yourself, "what if this treatment option doesn't work at all for me? Will this push me into a deeper pit of depression and/or hopelessness?" And also ask yourself, "what if this does help with any symptoms? How could this improve my current quality of life? Can I afford taking this risk? Can I afford not to?" Another option would be to purchase the EmWave Pro program from HeartMath at a much cheaper price than going to the POTS Treatment Center and watching YouTube videos to teach yourself how to do the program. I think this option is a lot better than not doing either. However, there were benefits of the overall experience that couldn't be mimicked unorganically at home. For example, it's hard to stay motivated and hopeful to do this program consistently at home in a less than relaxing environment. In addition, I found Dr. K's encouragement, meeting other potsies, reading the testimonies of amazing successes, and the healing environment to be priceless. I never would've understood the idea of "a healing environment" (as it sounds like an unscientific idea to say the least) before attending the POTS Treatment Center. However, it does make a huge difference. Another option to consider, if travelling to the POTS Treatment Center is less than ideal or completely impossible for you, would be to look for biofeedback specialists in your area and try to find one that uses the HeartMath program.
Do you have any tips for doing the program at home?
1. Purchase either the EmWave Pro program (the one that hooks up to your desktop and gives you the most information) or the Inner Balance one for your smartphone. I use the EmWave Pro program the most but asked for money to go toward the Inner Balance program for my last birthday because sometimes I didn't want to go to my computer desk to do the program and the bright lights of my screen would hurt my eyes/head. The Inner Balance app works great for on-the-go (if you have panic attacks in public this might be great to have) and when exercising. The Inner Balance program has a bluetooth connector that clips onto your shirt and your ear to record the HR and you look at the screen on an app on your phone. The EmWave Pro program includes a USB that connects to your computer that has a wire connected to an ear clip to record your HR. It comes with a CD to download the program but if your laptop doesn't have a CD drive then you can go to their website and use the serial number to download it to your laptop.
2. Watch YouTube videos on how to do it.
3. You can adjust the rate at which it tells you to breath on the EmWave Pro program (I don't think you can on the Inner Balance program but I could be wrong). One day at The POTS Treatment Center they had us figure out what rate was most comfortable for our bodies. Apparently the average inhale, hold, and exhale should be around 10-11 seconds total. They originally suggest a 6 second inhale, 2 second hold, and 4 second exhale but this was really uncomfortable for me. We found that a 5 second inhale, a 1 second hold, and a 5 second exhale was best for me. Sometimes when I'm feeling symptomatic I'll catch myself counting with my fingers (1, 2, 3, 4, 5, hold, 1, 2, 3, 4, 5) as I am now more accustomed to breathing like that in fight or flight mode.
4. The POTS Treatment Center recommended us doing it for 20 minutes in the morning and 20 minutes in the evening for best results.
5. Consistency is key! I didn't notice any benefit until I was doing this 2x a day for a week.
6. You might experience some chest pain/lightheadedness in the very beginning as your body transitions to this new way of breathing. Dr. K told me it was because I was trying too hard to remain in a high level of coherence at the cost of relaxation. After she told me this I became mindful of this and the symptoms started to ease.
Dr. K, if you're reading this, I'm so thankful for your dedication to improving the lives of many people with POTS. I am so thankful for the tools you and your program taught me that I still use frequently today. However, I am still quite symptomatic and it's not because I didn't believe your treatment wouldn't work, or because I don't want to get better, it's because of biological reasons that no doctor, including you, can yet explain. You didn't cure me but you should be as happy as I am that your tools added to my quality of life. Thank you.