Drop It Like It's POTS

Deep Breathing

September 5, 2019 9 Comments

Deep breathing is one of my favorite ways to improve life with POTS. I learned this strategy from the Mayo Clinic during the Chronic Fatigue/Fibromyalgia class I attended shortly after I was diagnosed with POTS and ME. Deep breathing has a positive effect on the nervous system both in the immediate present and in the long-term due to neuroplasticity. Neuroplasticity is the brain’s ability to form new neural pathways to compensate for disease or injury.

How does deep breathing help?

Mayo teaches that the brains of people with POTS and ME are in a state called “central sensitization” in which the sympathetic or “fight and flight” part of the nervous system is overactive. Deep breathing is a way to counteract that excessive sympathetic nervous system activity. Deep breathing stimulates the vagus nerve which promotes parasympathetic or “rest and digest” nervous system activity.

Our bodies cannot be in a sympathetic and a parasympathetic state at the same time. So, by deep breathing you are setting your body in the parasympathetic state. Over time, because our brains are neuroplastic, they become accustomed to that parasympathetic state and will default to it easier.

Sympathetic vs. parasympathetic nervous system states

Sympathetic:

“Fight or flight”
Uses a lot of energy
Releases adrenaline and noradrenaline
Makes digestive system run slower
Dilates blood vessels
Increases heart rate

Parasympathetic:

“Rest and digest”
Promotes digestion
Calming
Produces saliva and tears
Decreases heart rate

As you can see, basically all the things we DON’T need more of with POTS are involved in the sympathetic state and the beneficial things are in the parasympathetic state.

If POTS benefits from a calmer nervous system, does that mean it is a psychological disorder like anxiety?

Picture of Johnny Depp in Pirates of the Caribbean saying "Not true, of course not"

There is no shame or stigma about mental health. However, let me be clear because too often the POTS and ME communities have fought against psychosomatic labels. ME and POTS are NOT psychological or psychosomatic disorders.

Here is a study that demonstrates that POTS patients do not have more anxiety than controls. A doctor at Mayo showed me a slideshow of studies demonstrating the physical changes that occur in ME and it was astounding. I wish I could remember even half of them, but it was a blur at the time. One study that stuck out to me was that people with ME makes more waste metabolites (ex. lactate) from movement. It’s like our bodies have run a marathon but all we’ve really done is walk across the room. There are numerous physiological changes that occur in ME.

ME and POTS are neurological disorders and deep breathing has an effect on the nervous system. I like to view deep breathing as a “nervous system hack”.

How to do deep breathing

Deep breathing is very easy to learn. As long as you are inhaling for more than 4 seconds and exhaling for more than 4 seconds, you are stimulating the vagus nerve and putting your nervous system in a parasympathetic state. To learn how to deep breathe visit this YouTube video or download the free app Breathe2Relax. The YouTube video’s animation is super creepy and will haunt my nightmares but it does the job. The app is instructive and you can use it to do deep breathing sessions with calming music and breathing cues.

How I incorporate deep breathing in my life

I like to incorporate deep breathing in a few ways. I do a few minutes of deep breathing prior to my daily meditation practice.

I also deep breathe randomly throughout the day. Whenever it pops into my head, I will do a quick session for a few minutes using one of the techniques I detail below. I also make a point of doing a deep breathing session when I feel that I am carrying tension (I notice it most in my abdomen). For example, I have two little boys. They love to climb things and jump off things that freak me out, but I know that I need to let them be… enter deep breathing. I think this trains my brain to handle stress in a calmer way, which is healthy whether you are ill or not.

Picture of Alex Honnold free soloing El Capitan — My older son wants to be Alex Honnold when he grows up, so you can imagine what that’s like on a daily basis.

Different types of deep breathing

There are many ways you can deep breathe, which is great because you can mix it up when you get bored of one type. These are the types I have tried and enjoy:

Equal breathing- Breathing in and out deeply for the same amount of time.
4-7-8 breathing- Inhale for 4 seconds, hold your breath in for 7 seconds, and then breathe out for 8 seconds.
4-4-8 breathing- Inhale for 4 seconds, hold in for 4 seconds, and then breathe out for 8 seconds.
Square breathing- An example of this would be breathe in for 4 seconds, hold in for 4 seconds, breathe out for 4 seconds, hold out for 4 seconds.
Ujjayi breathing- This is my personal favorite type of deep breathing. This video on Youtube explains it well. It is a way of deep breathing where you create a tension in your throat to make an airy sound. Deep breathing this way keeps me focused on breathing and the breath sounds like the ocean so it is even more relaxing. In the first half of the video she does it with her mouth open to help you learn, but in the second half of the video she shows you how to do it with your mouth closed. I definitely do it the mouth closed way so I don’t scare people.

Picture of Ben Stiller in Heavyweights doing yoga and sticking his tongue out — What I imagine if I do it the mouth opened way

Side note- Is central sensitization the definite cause of POTS?

Central sensitization is a theory. The cause of POTS is not completely understood. Another theory is that POTS is an autoimmune disease. Researchers have found antibodies to adrenergic receptors present in POTS patients. Adrenergic receptors mediate the effects of adrenaline and noradrenaline, substances which increase heart rate. The studies on antibodies in POTS are small but still impactful on our understanding of the syndrome. I asked my neurologist who also does research on dyautonomia, “Is POTS an autoimmune disease?” and she said “We’re working on it.” She also mentioned that the underlying cause can be multifactorial and vary from person to person.

We don’t know for certain what causes POTS and ME but parasympathetic nervous system stimulating methods like deep breathing seem to address part of the mechanism involved. I feel this is a great strategy for everyone including healthy people. Modern living as it is puts our brains in an unnaturally overstimulated and oversensitized state. We could all use some parasympathetic stimulation.

Does anyone else do deep breathing? Have you noticed any effects from doing it?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Exercise

Exercise and POTS

September 4, 2019 7 Comments

Exercise has been one of the most impactful ways that I have improved my quality of life with POTS so far. When I was first diagnosed I was functioning around 30% of my normal. Today (September 2019), I function around 50-60% of my normal. I would attribute exercise to creating at least half of that improvement. It doesn’t seem like a lot, but if you have chronic illness, you know how sweet every 1% is.

How does exercise help?

Many POTS patients have lower than normal blood volume, smaller than normal hearts, and lower than normal stroke volume (how much blood is being pumped out per heartbeat). Exercise has been shown to increase blood volume, increase heart size, increase cardiac muscle strength, and increase stroke volume. As you can see, exercise targets some of the issues that POTS patients have.

Exercise also improves venous return. Leg muscles contribute to the body’s ability to pump blood back to the heart. If our legs become noodles from deconditioning, it isn’t doing us any favors. Regaining leg muscle strength may improve some symptoms by virtue of improving the muscle pump action upon the veins.

If you want to geek out you can visit these links on the science of exercise and POTS or how exercise stacks up against the beta blocker propranolol as a treatment. Dr. Levine is one of the contributors to these articles. He created the Levine Protocol which I am doing a modified version of. I will write an in-depth post about the Levine Protocol in the near future.

Limitations of exercise as a treatment

These abnormalities such as a low stroke volume, etc. seen in POTS patients are NOT the only factors at hand. Exercise does not address the underlying neurological issue in POTS; therefore it has limitations as a treatment.

You’re nuts, I can’t even walk up the stairs. How will I exercise?

Before I resumed exercise my husband would sometimes have to carry me up the stairs because I was that weak. It’s hard, I feel for you. It is more than just mind over matter, but rather fighting against your own body and its signals.

It helps to reframe your expectations. When I started exercising again I begun doing just 3 minutes of P.volve which is basically physical therapy movements. That is all I could handle. I would slowly add time to each session as I was able. It took a long time to be able to make progress in the beginning, so do not be discouraged if it takes you a long time too.

Some people with POTS are severely disabled or completely bedridden. If you fall into that category I would recommend starting an exercise program under the guidance of a physical therapist. They will know how to tailor an exercise program to your abilities and be able to keep you safe in the process. In general, if you are not confident about starting an exercise program, seek out a PT that is knowledgeable about POTS.

A note on deconditioning

A lack of exercise does not cause POTS, but deconditioning after coming down with POTS can make things worse. It is important to recognize that you did NOT cause POTS by becoming deconditioned. You got POTS, then possibly became deconditioned because it’s debilitating and scary. I tell you this so that you offer yourself grace and understanding.

I’ll use myself as an example to illustrate how easy it is for us POTS patients to become deconditioned. Before getting POTS I was doing sprint interval training and P90x3 videos. When the orthostatic symptoms of POTS began, I listened to my body and stopped exercising. I had no clue what was happening to me and didn’t know if it was dangerous to exercise.Well, it took over a year to figure out what was going on and for me to get diagnosed. Due to POTS symptoms, I also laid down a whole lot during that year. Did you know that it takes only 24 hours for your body to begin to decondition? Pretty crazy, right? Imagine how much fitness I lost over a year of laying down and not exercising. Many of us have similar stories. This is the progression: POTS, then we take it easy because it’s debilitating, then we become deconditioned, and then the deconditioning exacerbates the POTS. It can become a vicious cycle leading to further disability.

What characteristics should I look for when choosing a type of exercise?

Be wise in choosing what type of exercise to pursue, especially if you have ME. A hallmark trait of ME is post-exertional malaise or in plain language, you’re gonna pay for that. If I “overdo it” in any way, I will pay for it by crashing for days. Be kind to your body and respect its new limitations.

I recommend exercise that is “chill”, as opposed to the type where you have to push and push and a trainer is yelling at you, etc. The current thought about POTS and ME (and fibromyalgia and other associated conditions) is that part of what is occurring is that our nervous system is stuck in a “fight or flight” or sympathetic state. Exercising in a pushing, stressing, or intense way contributes to keeping the nervous system in a sympathetic state. I used to be stuck in the mindset of “no pain, no gain” and other hardcore work out philosophies. Over time I have learned that you can build strength and fitness without wrecking yourself.

Exercise bike — Exercise equipment I use

Types of exercise I have tried that have NOT worked well with POTS

P90x3. Nope. This is way too intense and fast-paced for me.

Yoga. Yoga is not a total fail but I can tell it’s not the best thing for my POTS. Inversions and holding poses (isometric muscle contractions) are not my friend.

Movements with my arms above my head for an extended period of time. My arms get “gassed” really quickly this way and I will become more lightheaded. I still do some movements this way, but I do not stay in this position for long/more than one set.

Types of exercise I have tried that have worked well with POTS

P.volve. I cannot say enough good things about P.volve. I will do an in-depth review of it in another post. The functional movements have helped me regain my strength and it is gentle enough it has never caused me to crash. Some workouts are standing, some are on the mat, and some are a combination.

Recumbent bike- This is a new one for me. I started doing it with the modified Levine Protocol. So far, I am digging it. Today I bicycled for 21 minutes which is nearly twice as long as I could tolerate cardio while standing. So, that’s twice the cardiac benefit I am reaping just by switching to a recumbent position.

Pushups, pullups, and hanging- I do either one set of pullups or one set of pushups every morning. I also hang from a bar as long as I can. These are great functional movements that I like to maintain my strength on.

Dance cardio- I absolutely love The Fitness Marshall. He is a crackup. The dances are easy enough to learn quickly, but are still fun and cool. The challenge with dance cardio is that it is all standing, so I can only tolerate 10-15 minutes of it before I am wiped out.

How has exercise helped you? What types of exercise work well for you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Medications/Treatments etc.

Propranolol, Midodrine, and Fludrocortisone for POTS

September 1, 2019 5 Comments

In the year since I have been diagnosed I have tried the three first-line POTS medications: Propranolol, Midodrine, and Fludrocortisone. For the most part, these have not worked well for me, but that doesn’t mean you will have the same experience. It’s always worth discussing all the different options with your doctor.

Propranolol

Propranolol was the first POTS medication I started after I was diagnosed. It is a beta blocker so it lowers the heart rate. In reducing the heart rate overall propranolol also reduces the dramatic elevation of heart rate upon standing in POTS patients. My dosage was 20mg in the morning and 10 mg in the late afternoon. I feel propranolol is a decent “bridge” drug. It may take the edge off symptoms as one works on becoming more active and conditioned. By the time I was diagnosed (over a year after the onset), I had become extremely deconditioned. In fact, I couldn’t fathom exercising more than 3 minutes at a time.

Propranolol gave me a very slight boost that helped me tolerate beginning an exercise regimen. After several months on propranolol, my local doctor thought I should see how I do off of it since propranolol can exacerbate fatigue and decrease blood pressure. I gradually weaned off propranolol and can confidently say that I do not notice any difference between being on it and being off it in a more conditioned state. It’s effects were limited to when I was deconditioned. I did not have any side effects from this drug, which is always a major pro.

Midodrine

In the spring of 2019 I was no longer taking any POTS medications. I wanted to try something new so I asked my local doctor about midodrine. Midodrine is a vasopressor. It works by constricting peripheral blood vessels so less blood pools in the lower extremities of POTS patients. I initially tried a dosage of 5mg 2-3 times per day. This drug did not work for me at all. Midodrine did not improve any of my symptoms; it just made me dizzier.

I was surprised that midodrine affected me that way, as it is certainly not common. I experienced the usual side effects of midodrine like goose bumps and a tingly scalp. Those side effects were not a big deal, though. If the drug would have worked for me I would have happily welcomed the tingly goose bumps. I retried midodrine at a half dosage which eliminated the extra dizziness. However, it was still ineffective at tackling any POTS symptoms.

Fludrocortisone

Fludrocortisone AKA Florinef is a synthetic hormone that causes the body to retain more salt and therefore retain more water. Through this water retention Florinef increases blood volume which can help with some of the orthostatic intolerance that POTS patients experience. WTFlorinef! This drug was terrible! After a few days on it my muscles became progressively weaker until they were completely gassed. In track we used to call this phenomenon “booty lock”.

Picture of Jim Carrey freaking out about having spears in his legs — My legs on Florinef

I never thought I would get booty lock from walking across the room. I was on Florinef for less than two weeks. A couple days after I discontinued the drug, my muscles went back to feeling their POTS normal.

Has anyone else experienced this effect with Florinef? What experiences have you had on these first line POTS medications?

More information

To see what I am currently using instead of these medications visit the current treatments page.

To learn more about the various POTS medications check out this overview by Standing up to POTS or this one by PoTSUK.

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Food

Energy-Boosting Chocolate and Fruit Smoothie

August 30, 2019 4 Comments

Nutrient dense food improves energy levels, but when you are devoid of energy how do you prepare nutrient dense food? It’s a paradox that many of us with chronic illness face. I got your back. This energy-boosting chocolate and fruit smoothie is one of the easiest and tastiest ways to add more nutrients to your diet. Raise your hand if you love chocolate.

A picture of girls raising their hands from the movie Mean Girls

I LOVE making smoothies for breakfast and do so nearly every day. Smoothies are a great way to cram a lot of nutrition into an easy to consume package. They are perfect for when your youngest child is like a hobbit and wants to fit that “second breakfast” in before school. The smoothie takes only 2-3 minutes to make so you can have plenty of time to cook that second breakfast for your hobbit child.

Picture of a hobbit asking for a second breakfast

Ingredients

Roughly 12 ounces of unsweetened vanilla almond milk- Adds a good creamy flavor without adding sugar. I eyeball my ingredients so the amount of almond milk can vary on what is needed to create a good consistency.
2 cups of a frozen mixed fruit/mixed berry blend. I work with a nutritionist who told me that the key to improving gut flora is consuming a variety of fruit and vegetable fiber. So, wherever you can add variety, do it.
1 tablespoon of cocoa nibs- Adds chocolate flavor, fat, and protein. It also has beneficial compounds like theobromine (a natural stimulant) and phenylethylamine (a mood booster) in it.
½-1 tablespoons of 100% cocoa powder- Adds more chocolate flavor. This is probably redundant for some people, but if you’re a cocoa nut like me, load it up my friend!
1-2 tablespoons of hemp seeds- Adds protein and fat.
A handful of spinach- Loaded with nutrients and antioxidants. For the picky folk out there, no you cannot taste its flavor or texture.

Blend it all together and enjoy!

Adaptations- Adding more “bulk” to it

If you find yourself getting hungry before lunch you can add more hemp seeds, flax seeds, chia seeds, an MCT oil (I like Brain Octane Oil by Bulletproof), or a protein/collagen powder (I have enjoyed ones by Vital Proteins and Primal Kitchen).

Adaptations- Making it sweeter without adding sugar

If this recipe is not sweet enough for you I recommend swapping out the cocoa nibs, which are quite bitter, for a flavored protein powder. I have used the Primal Kitchen Chocolate Coconut Collagen Fuel or Vital Proteins Collagen Creamer in Vanilla (I use just a half-scoop of this). Those powders do not use any sugar or artificial sweeteners, just natural flavors to add a touch of sweetness. They don’t even have stevia in them, which is very common in protein powders.

A note on stevia

I have zero scientific basis for this but I do not trust stevia. It tastes exactly like artificial sweeteners. I don’t understand how it can be that sweet and not have any sugar-like impact on the body. I wouldn’t be surprised if in 10 years the consensus is that stevia is the devil just like nutritionists say about artificial sweeteners today. Again, I don’t have any evidence to back that up, it is just a hunch to be taken with a grain of salt.

Blending

I recommend using a high quality blender otherwise your smoothies will be nasty and chunky. We used to have a Nutribullet Pro that worked well until it broke after just a couple months of use. I had a lot of issues with smoothie liquid leaking into the base, which ultimately led to its demise. Now we use a Cleanblend Classic blender. It is a beast of a blender and works great. It is also very easy to clean and the bottom doesn’t come out so there are no leaking issues.

What are your favorite combinations to put in smoothies?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Other

Pre-Diagnosis Treatments- Part 1

August 25, 2019 10 Comments

This is part one of a two part series where I will go over the pre-diagnosis treatments that I tried. Most of them are epic fails and I encourage you to laugh at my pain.

Whole30

I had been feeling unwell for a while but it became clear in the summer of 2017 that I needed to do something. I decided to do a Whole30 (a strict paleo diet) as a last ditch effort before making a doctor appointment to find out what was going on. A Whole30 is where you basically eat twigs and berries and become a sugar deprived monster.

Today I actually eat a modified paleo diet similar to the Whole30, but now I know better than to do a dramatic change like that all at once. Our bodies are sensitive to dramatic changes with POTS, so slow is the way to go. I started having orthostatic issues while on the Whole30. I believe now that the stress of changing my diet so dramatically was the straw that broke the camel’s back. After the Whole30 I was worse than ever and began seeing doctors and getting tests done.

Valtrex

After having tests on tests and everything was normal, doctors began suggesting that I must be latently depressed (I wasn’t). A couple doctors were huge jerks about it.

Picture of Shawn and Gus from Psych saying "suck it" — When doctors are jerks, I like to get it out of my system like Shawn and Gus here and then move on

I’m sure many of you can relate to that. So, with all the western medicine doors seemingly closed I began seeing a functional medicine practitioner. She said I had chronic infections of various types including the Epstein Barr virus. The first thing we tried was Valtrex since it is an antiviral. I felt like straight up garbage on it. The functional medicine practitioner told me this was due to a “die off” reaction. I have since learned that whenever you get worse on something it is conveniently called a “die off” reaction.

Bac-T

Bac-T a homeopathic tincture that has antiviral and antibacterial properties. A chiropractor from my hometown who I respect very much gave it to me as an alternative to Valtrex. After a month on Bac-T I really thought I may be getting better and even hit around 70% of pre-illness function. Six weeks later I crashed and continued on a decline, with or without the Bac-T. Bac-T tastes like herbs mixed with rum but who cares, right? My husband and I joke that I would eat lemur left nut (LLN for short) if it were proven to make me feel better. I’m sure you can relate. LLN for life.

He does not approve of LLN.

Cholestyramine

This is a medication that binds to bile salts to make you eliminate them. The body compensates by using cholesterol to replace the bile salts, thus reducing overall cholesterol. Cholestyramine is typically used to lower cholesterol. The claim is that this process also lowers the amount of toxins stored in bile. My functional medicine practitioner advised me to take Cholestyramine while I was on Valtrex or Bac-T. I took it for about a month before I concluded that it wasn’t safe for me long term. I remember from college (I was a Biology major) that cholesterol is an important piece of the structure of our cells, so I wondered what kind of long-term effects this excessive leaching of cholesterol would have.

Antibiotics, Antibiotics, and More Antibiotics

The functional medicine practitioner suggested that I switch to antibiotics when antivirals were no longer effective. I began with Docicycline and Flagyl on rotation. I initially thought these antibiotics might be helping but I now know that symptoms fluctuate. After a few months on antibiotics, I crashed hard and began having new symptoms. My stomach became very distended and I would get shooting pains in my stomach that would knock me to the ground. When I asked my functional medicine doctor about it she said it was a “die off reaction” and suggested I add Azithromycin into the antibiotic rotation. That last recommendation woke me up that I needed to look at all of this rationally. I was just damaging myself. I listened to my gut (literally and figuratively), went off everything, and started making plans to get reassessed at the Mayo Clinic.

High-Dose Vitamins, Minerals, Digestive Enzymes, and Probiotics

To support my body from the illness as well as the heavy antibiotic usage, it was recommended that I take high-dose vitamins, minerals, digestive enzymes, and probiotics. I do not know if these have value in other circumstances, but it did not help me at that time. My energy did not improve in correlation with including these and my GI system was still in agony from the antibiotic usage.

Chiropractic Care

At one point I thought this may be helping, but when I crashed again I realized it was coinciding with a natural fluctuation of symptoms. I do respect chiropractic care. As a former athlete, chiropractic adjustments were crucial to my body staying healthy and injury-free. The chiropractor I was seeing at this time (spring of 2018) also worked with supplements, applied kinesiology, and NET (Neuro Emotional Technique). Ultimately, I stopped seeing this chiropractor because I could tell something deeper was going on and that I needed to get reevaluated in western medicine. I also tried chiropractic care with my hometown chiropractor, but I couldn’t visit regularly enough to do it right. I may revisit chiropractic care in the future, but for now I have other ideas I want to pursue.

Lemon Water

Picture of Robert Downey Jr. rolling his eyes — That’s all I have to say about that

To see what I am currently doing for treatment visit the current treatments page.

Pre-Diagnosis Treatments- Part 2

Have you tried any of these treatments along the way? How have they worked for you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.