Daily Life Experiences: Challenges, Strategies, and Implications for Therapy in Postural Tachycardia Syndrome (POTS)

[SarahLyon]

Read Full Text: Daily Life Experiences: Challenges, Strategies, and Implications for Therapy in Postural Tachycardia Syndrome (POTS) (This article is only available for purchase, but we thought it was important to cover!)
Journal: Occupational Therapy In Health Care
Year Published: 2020
CEU Podcast: POTS & COVID-19 Long Haulers with Emily Rich

This article is personal and emotional for me, because it centers around a diagnosis that ultimately led to me creating the OT Potential Club.

The diagnosis is postural orthostatic tachycardia syndrome (POTS). I spent several years struggling with POTS-like symptoms, wondering what was wrong with me and feeling desperate for a diagnosis. During this time, I discovered how much research never even reaches the hands of healthcare providers.

This week’s article will introduce you to the daily challenges of POTS patients, including the management strategies they use to get through each day. (You’ll also learn how OTs are uniquely positioned to help this population.)

And, this article will also set the stage for a discussion we’ll be having next week on the OT Potential Podcast, where we’ll cover POTS-like symptoms experienced by COVID-19 long haulers.

Let’s dive in!

What is POTS?

POTS stands for postural orthostatic tachycardia syndrome. “Orthostatic” refers to an upright posture, and “tachycardia” refers to a rapid heart rate. So, just in the name, you get the hallmark of this diagnosis: an unusual jump in heart rate upon standing up. Dizziness is common, along with a wide variety of other symptoms (discussed below).

There is a lot of nuance to the diagnosis of POTS, and there’s quite a bit of variety in the presentation of symptoms. But, another common symptom is that blood pressure usually remains relatively steady upon standing up, which differentiates POTS from orthostatic hypotension.

It is estimated that POTS affects between one and three million people in the U.S. The majority of them are women. POTS commonly emerges during puberty, after a viral illness, or following surgery/other health events. (My symptoms started when I finished breastfeeding!)

What causes POTS?

POTS is caused by dysfunction of the autonomic nervous system (ANS).

(Remember: the ANS controls your “automatic” bodily functions, like heart rate, respiratory rate, and digestion.)

The umbrella category for ANS dysfunctions is “dysautonomia.”

The article does not go into detail about causes, but something I think is helpful to know is that POTS is sometimes called “Grinch Syndrome.” That’s because one common feature appears to be that blood volume drops and the heart muscle itself actually shrinks in size! Another issue appears to be that blood may pool in the lower body—and, again, this leads to less blood volume being pumped through the heart. (This info will come in handy for understanding treatment.)

What was the purpose of this study?

The specific intent of this paper was to paint a picture of daily life with POTS, by capturing common challenges of life with POTS as well as the strategies frequently used to manage them.

I also want to point out that, while there is some promising evidence supporting the use of graded exercise programs for POTS patients (which OT/PT are uniquely poised to provide), research focusing on the effects of exercise on POTS is still fairly limited.

Who was included in this study?

A cohort of 958 individuals who self-identified as being diagnosed with POTS responded to a survey from which responses were gathered and analyzed. The survey was distributed via Facebook through Dysautonomia International.

What are the common difficulties reported by POTS patients?

Five themes emerged as common challenges experienced by POTS patients. I’ll list them below, ranked based on their frequency as identified by the analysis of the data.

Physical challenges

The most frequently reported challenges in the category of physical difficulties included:

• Presyncope (dizziness, lightheadedness, nausea, feeling like you are going to faint)
• Syncope (actually fainting)
• Weakness while sitting or standing
• Difficulty regulating body temperature
• Pain
• Sensitivity to auditory or visual stimuli
• Blurred or double vision

Energy and sleep-related challenges

More than half of the participants identified fatigue and limitations in endurance as disrupting their daily activities.

15% of participants prioritized sleep-related issues, including difficulty falling and staying asleep as a top difficulty.

Functional participation

As you can imagine, challenges with ADLs and iADLs were reported frequently.

Symptoms were often unpredictable in nature, making it difficult to maintain a daily routine. One common experience of participants was that symptoms were worse in the morning.

Autonomy

Nearly a quarter of participants reported difficulty maintaining independence. They reported relying on family with help in daily tasks. A limited number of participants said that they were unable to work due to the symptoms.

Cognition

Cognitive difficulties reported included difficulties with:

• Concentration
• Word finding
• Memory

The most common descriptor used was “brian fog.”

What are the common management strategies used by POTS patients to combat symptoms?

Just over 5% of participants had not been able to find any form of strategy that helped manage symptoms. The vast majority had found some combination of strategies that alleviated some of their symptoms.

The authors grouped these management strategies into 5 themes. I’m listing the themes in the order of most frequently shared strategies, per the analysis.

Adaptive strategies for ADLs and iADLs

The strategies that fit into this theme came up the most frequently in the survey responses, which speaks to how much POTS can upend daily life (requiring a new approach to daily tasks that many take for granted).

Specific strategies that were listed in this theme include:

• Adaptive equipment, including:
  • Shower chairs
  • Scooters
  • Walkers
  • Canes
  • Wheelchairs
• Positioning for symptom management, including:
  • Elevating the head or legs of the bed
  • Positioning chair/stools throughout the house to side during tasks
• Performing breathing exercises
• Monitoring heart rate
• Sleep hygiene, like maintaining a sleep schedule
• Conserving energy (Many participants brought up the concept of Spoon Theory to explain the importance of energy management)
  • Taking naps
  • Pacing
• Safety measures
  • Service dogs
  • Diabled parking permit
  • Wearing a medical alert bracelet

Nutritional strategies

Nutritional strategies were frequently cited. Nutrition is a powerful tool to avoid unnecessarily spiking your heart rate (like with caffeine). And, for people with a low blood volume or accompanying blood pressure issues, salt retention can actually increase blood volume and blood pressure.

So, it makes sense the top strategies here were:

• Increased fluid intake
• Supplementation of sodium
• Eating/drinking foods high in sodium
• Eating small frequent meals & having snacks available
• Some participants benefited from removing caffeine, while others felt caffeine improved symptoms

Therapies

This section does state that physical exercise was also reported, but it does not give a precise percentage of respondents. Here are the other therapies that were mentioned:

• 22% reported use of medications (anti-hypertensives, corticosteroids, beta blockers, pain reducers, anti-anxiety, and stimulants)
• 12% reported wearing compression garments (remember how blood pooling in the LE is an issue…)
• 3% noted improvement with OT/PT
• 3% mentioned alternative therapies, including acupuncture, massage, CBD oil, medical marajuana, and essential oils

Psychosocial strategies

Just behind the use of medication, in terms of frequency cited, was “psychosocial strategies.” Some individuals reported these strategies as having more impact on their lives than the use of medication. These strategies included:

• Meditation
• Prayer
• Mindfulness
• Perseverance
• Acceptance
• Positive attitude
• Self-compassion
• Letting go of expectations
• Minimizing stress

From my personal observation, these strategies may be particularly effective with this population as they all can induce calm. They can also help normalize heart rate, which is one of the key struggles for this population.

I also wanted to note that a small percentage also state that finding a knowledgeable healthcare provider was an important resource for their management of POTS.

Cognitive strategies

While the previously mentioned strategies were focused on influencing emotional state, the participants also reported the need to draw on their reasoning skills and enact cognitive strategies, including:

• Knowing their limits
• Avoiding triggers
• Not being afraid to ask for help

What else was discussed?

One thread of discussion I thought was particularly important was the amount of seemingly haphazard trial and error that POTS patients go through in trying to find effective management strategies. As they stated: “some trialed many strategies simultaneously, or jumped from one strategy to another.”

This haphazard approach may be connected to the difficulty in finding a healthcare provider who is knowledgeable about POTS treatment. When a knowledgeable provider is found, there may still be some trial and error involved—but at least the provider can assist in making things as systematic and evidence-based as possible.

What were the clinical implications of the study for occupational therapists?

Since this article was written by OTs and published in an OT journal, it had specific recommendations for OTs!

Occupational therapists have a critical role to play in disseminating research like this article. They can also help individualize the care of POTS patients, based on strategies recommended by the patient community, as well as using knowledge of the best evidence available.

Specifically the authors stated that therapists have a role in:

• Ensuring implementation of medical and lifestyle interventions
• Prescribing an individualized exercise regimen
• Connecting patients with informed healthcare providers
• Identifying appropriate activities and modifications to enhance occupational performance and increase independence

Takeaways for OT practitioners

(Please note, these are our personal takeaways and were not mentioned specifically in the article.)

1. POTS patients were already an underserved population—and COVID-19 is adding to this need.

POTS has been making national news since this article was published, as some COVID long-haulers appear to be exhibiting POTS-like symptoms. While we are on a huge learning curve, there is definitely a need for a safe, systematic approach to long haulers’ treatment, just like there is for traditional POTS patients. The topic of POTS and COVID long haulers is going to be the focus of our podcast next week, so if you have any questions for our expert guest (who happens to be the co-author of this week’s article!!!), please leave them in the comments.

2. The self-identified challenges and strategies in this article should feel like a call to action for you to consider how you can get more involved in serving this population.

It should not slip past you that ADL/iADL adaptive strategies were the most reported by this patient population. Now, just imagine how much more these strategies could be leveraged if the patient was meeting with you! After all, you’re an adaptive ADL/iADL expert, and simply reading this article has given you a better understanding of POTS than many healthcare professionals have.

3. Exercise comes up frequently in the Club, and there seems to be a huge need to help patients establish the HABIT of exercise, not just give them lists of exercises to do.

You guys…there is a reason why books are being published called the end of physiotherapy. Because simply guiding patients through exercises and then giving them lists to do at home does NOT work to establish what they actually need: an exercise habit.

This really applies to POTS patients! Graded exercise is one of the most important approaches to POTS—and, based on this survey, it is underutilized in this population. There are really elaborate graded exercise programs out there (like this one), but your patient really needs someone to help them think through their options: what can they actually incorporate into their life? What can they continue to do for literally years after therapy has ended?

Here’s the full APA citation for this article:
Emily M. Rich, Asha Vas, Valerie Boyette & Carol Hollingsworth (2020) Daily Life Experiences: Challenges, Strategies, and Implications for Therapy in Postural Tachycardia Syndrome (POTS), Occupational Therapy In Health Care, DOI: 10.1080/07380577.2020.1824303

Earn one hour of continuing education by listening to the podcast on this article!!

In this podcast episode, we dive even deeper into this topic, with POTS expert (and Club member!), Emily Rich. You may be eligible for continuing education credit for listening to this podcast. Please read our course page for more details!

What questions/thoughts does this article raise for you?

[Courtabacker (Courtney Wang)]

With some of my clients with POTS we do journaling, the Goal Plan Do Review technique, combined with mindfulness. Through mindfulness and journaling I work with clients to self assess, monitor symptoms, and we gradually develop an individualized compensatory strategies. Using GPDR they can proactively plan their day to self monitor and implement strategies. I find these techniques combined help with many other treatment areas as well such as TBI, CFS, COVID long haul, etc)

[collinsacademyOT (Sarah Collins)]

This was so timely because we are taking my daughter to the cardiologist and POTS clinic this week. My OT brain has already been really impressed with the clinic. They had her start a food and exercise journal to increase her awareness of her current habits.

[rana (Rana Eagan)]

This is amazingly helpful! My daughter has POTS due to EDS. We have done increased fluid intake and increased sodium in her foods. I didn’t think about having her journal her exercise and/or food. She also can’t make quick movements which makes her dizzy as well. We definitely have to practice mindfulness as she sometimes doesn’t think before she moves.

[DevonCochrane]

Thanks for this post Sarah, and for sharing a bit about your personal experience. We went through something similar with my wife and she never got a POTS diagnosis but has periodic issues that are similar. It’s been frustrating to recognize the limitations of our healthcare system (yes, even in Canada!) And the diagnostic process.

I love that this article highlights the important role we play in most chronic conditions: helping strategize for better occupational engagement, manage symptoms through practical and sustainable means, address the psychological and cognitive considerations like planning, pacing, self expectations and “letting go”. There is so much there that resonates with a typical OT practice. Perhaps it’s hinting at the “standard set of tools”.

[SarahLyon]

Hey all! I saved my personal experience with POTS-like symptoms for the comments. But definitely wanted to share what helped me:

1. Finding a general practice doctor that supported and believed me. Her help was critical to try all of the first line tests to eliminate other diagnosis, then helped me get into the right specialists
2. Switching to wearing glasses. This sounds so simple, but issues with my visual-sensitivity was a huge trigger for me. And, I ended up at a neuro-opthamologist. Switching to glasses was one of her first recommendations- and one of the few things that I tried over the years that gave pretty immediate relief.
3. Monitoring my heart-rate. I spent two years being made to feel like my problems were “in my head” so for me personally, it was actually hugely comforting to see that my heart-rate was associated with my dizzy spells.
4. Changing my daily routine. I began showering and exercising in the evening, because that was consistently my best time of day.
5. Seeking out super-specialists. in my experience, just finding a neurologist or cardiologist was not enough. They both helped me eliminate some possibilities, but not much else. Finding a cardiologist who specializes in electrophysiology helped- he put me on fludrocortisone, which gave me enough of a boost that I was able to start my graded exercise program.
6. GRADED EXERCISE. Once I realized my issues were similar to POTS I took the diet recommendations from this article and exercise recommendations from this PDF and followed them as closely as possible. I felt better in 3 month and got close to back to normal in 8 months. Everything else I listed above, I consider to be just part of the journey to getting on a good graded exercise plan, which I credit with giving me my life back!
7. Approaching everything with an OT mentality. Here’s a blog post I wrote during this time, which highlights the OT principles that I clung to, kept my going, and helped lead me to feeling better.

[rose (Rose Wisniewski)]

Thank you for this article because the information is lacking for this diagnosis. I also thought how the POTS presentation was going to be affected by COVID! I can see how comprehensive OT intervention can include the practicality of ADL instruction with anxiety management. Deep breathing exercises with change in position has been helpful with patients. I’m also including Craniosacral therapy to treatment options to assist with the brain fog!

[connie (Connie Ryan)]

My good friend , believes she has POTS she has had numerous times that she passed out :in high school and college and now at work ! She had symptoms for years ! Finally one doctor realized what she had ,an ER doctor. . She will be getting married in the future . I wander how does it effect pregnancy , I think it would greatly be a concern , due to increase ankle swelling , increase need for cardiac volume increase BP in some women . It is an interesting topic that I need to explore for my friend , and future dtr in law!

[SarahLyon]

Hey @connie ! I’m glad you brought up pregnancy! Because, POTS largely impacts women of “childbearing age” this has to be a common concern. I thought this article was a helpful overview. I’ll be curious if @emily12 has any other resources to share. (And congrats on a future daughter in law!!)

https://www.dysautonomiainternational.org/blog/wordpress/pots-and-pregnancy-safety-and-other-concerns/

[SarahLyon]

@DevonCochrane, I didn’t know this!! Your wife has such a great husband to help navigate this.

Ugh! The diagnostic process for this condition is awful!! I always have to say I have POTS-like symptoms, because I never received an official diagnosis. After seeing all kinds of doctors, I was able to get an appointment with a neurologist who specializes in POTS, but it was 8 months out. Thankfully, as an OT, once I had eliminated lots of other diagnoses and was pretty sure I had something similar to, if not POTS, I was able to just start on a pretty intense exercise/diet program for the condition and had such a resolution of symptoms that I ended up cancelling my appointment. (I was DONE with appointments by that point my patient journey…)

[emily12 (Emily Rich)]

Thanks for this link, Sarah. I would say this is the best summary of the current literature + clinical experience from Dr. Blitshteyn. For the most part it seems to be similar to the general population, with some seeing improvement in symptoms temporarily if not long lasting and some feeling worse. Medication can be a challenge (whether to go off or stay on it) in patients I’ve talked with, especially for those on midodrine but Dr. Blitshteyn is available for remote consults I believe and would be a good person to connect with.

[Rsaltzgaber (Rachel Saltzgaber)]

Thank you so much for sharing, Sarah!! I’m not familiar with POTS so excited to follow along! Looks like a great place for OTs to be involved!!

[irma (Irma Pereira)]

This was a very interesting article. I had heard the term POTS before but I did not have a full understanding of the clinical picture. Lately, I have been reading about how these symptoms are affecting COVID-19 patients without understanding the clear picture of the symptoms. I agree that OTPs are greatly prepared to work with patients who have POTS as our training aligns with those areas that they have the most problems with ADLS iADLS, sensory triggers, work simplification, home modification, and learning how to do tasks safer and simple.

Thank you so much for bringing this article to light. I don’t work with adults but sadly do have family members who are demonstrating some of these symptoms and now can give them some advice on how they can manage their symptoms and difficulties a little better.

[nichole1 (Nichole Arn)]

Hi Sarah,

Thank you for bringing this informative article about POTS to the Club!
One thing that I typically struggle with while researching diagnoses is the ability to brainstorm helpful interventions and strategies. I appreciate that you mentioned specific intervention ideas to help improve the well-being of people dealing with POTS symptoms. A few treatment suggestions that stood out to me were deep breathing strategies, mindfulness, and graded exercises. I love the idea of slowing down, dealing with life demands in manageable amounts, and continuing to get stronger overtime.
I look forward to learning more in next week’s podcast!

[Genny (Genny Cook)]

I think this article brings up a great point that there are MANY conditions that could be supported through OT interventions that do not typically receive referrals. While my only OT work experiences have been school based, I recognize how in general, OT advocacy and education is one of our greatest areas of need across the board- we have so much to offer and because of current systemic limitations, it seems like such a battle to ‘grow’ our profession. I feel like we can take pretty much any condition and help patients in some way by sticking to our roots of focusing on function and what specific occupations are important to each individual.

[sanchala (Sanchala Sen)]

Thank you for another thought-provoking article. I have had patients with these symptoms but they were never diagnosed with POTS. It is very interesting to read from you and others about their or their family’s lived experiences. I am following with interest and look forward to next week’s podcast.

[leah5 (Leah Hawks)]

New to the Club! Thanks for this article breakdown!
If we studied POTS in school, I definitely haven’t encountered the diagnosis in the last 7 years of practicing but OH, so often do we have patients with pre-syncopal or syncopal episodes with normal BP upon assessment. It would leave us in the therapy dept scratching our heads, nervous about the next session and questioning what factors contributed to the event.
This may not have been the actual cause/diagnosis of our patients, but too often nursing would brush it off as low blood sugar or something of the like - when all lab values were WNL.
It is almost a relief to know that orthostatic symptoms could be present in a patient with normal BP.
Will definitely pass along to our team!

[emily12 (Emily Rich)]

Absolutely agree, Genny! And you are in such a great place in schools (if you see any middle or HS students) as that commonly the time of onset for many of these patients - the adolescent years, often females begin demonstrating these symptoms with onset of puberty. You could be a path for these young women to have answers - collaborating with school nurse, teachers, etc.