POTS

Water

• Increasing fluid and salt intake increases blood volume, which is typically low in POTS patients. It’s important to increase salt intake along with increasing water intake to prevent hyponatremia (too much fluid in the cells and not enough in the blood).

• Aim for 2-4 liters of water per day (some of this can be through consuming hydrating foods, see below)

• Start hydrating upon waking – keep water next to your bed and all around your home

• Ideally, drink reverse osmosis water or purified water with added minerals. This is especially important for patients also suffering from Mast Cell Activation diseases. We now have a reverse osmosis filter in the kitchen. We used to use a Berkey water filter, and we bring the Berkey with us on trips. Natural spring water is also a good option.

• Ideally, avoid tap water and most bottled water, especially those in plastic bottles (which is often tap water).

Salt and Electrolytes

• Increasing fluid and salt intake increases blood volume, which is typically low in POTS patients. Salt helps blood volume because salt attracts fluid, so if you want to keep fluid in the bloodstream, you need salt in the bloodstream.

• Aim for up to 10-12 grams of salt per day (not 10-12 grams of sodium), as tolerated

• Himalayan or Celtic (better than table salt because they are full of minerals)

• Trace mineral drops

• SaltStick electrolytes

• Tip: leave bowl of salt next to bed and other places around your home; have spouse/partner give you salt kisses

Compression

Compression of the lower limbs and abdomen can cause an increased blood flow to the heart and prevent blood pooling. Some patients do this instinctively, wringing their legs or arms together. Body compression can also be helpful. Patients may be able to get insurance coverage for medical compression garments with a prescription from medical provider. Compression can also be helpful for plane travel.

• Comrad compression socks

I knew for so many years that compression socks were enormously helpful, but rarely wore them because they were ugly AND because medical-grade compression socks can be really difficult to put on and take off (especially if you have hEDS) and I would constantly end up injuring my fingers in the process.

While medical grade compression can offer the “best” support and may do the best job at alleviating POTS symptoms, in my opinion the best compression garment one can wear is the one they are actually going to wear. For me, that’s Comrad compression socks. They are 15-20 mmHg graduated compression and they come in cute patterns and an array of colors. I’ve been stopped multiple times by strangers complementing me on my pink Ombre knee-high compression socks.

• Normatec compression

Designed for athletic recovery, Normatec compression leaves me feeling like a cloud. Someone with POTS can particularly benefit because of the hardcore squeezing action that can squeeze life back into your body. This has been a savior for me during some of my worst POTS flares. These can also be reimbursed through FSA/HSA with proper medical documentation.

• Compression gloves

I’ve gone through phases of my life when I would wake up every morning with super swollen, painful hands, unable to get my rings off. With these 100% cotton compression gloves, I wake up with hands that are the right size and don’t hurt.

• Abdominal binder

I love wearing my abdominal binder. It increases my general comfort in my body, warms up my belly (which is usually ice cold), enhances my abdominal proprioception, improves by breathing, and calms down my nervous system.

Parasympathetic Nervous System

The sympathetic nervous system is responsible for the “fight-flight-freeze” response. The parasympathetic nervous system is responsible for the “rest-digest-recover” system, and regulates blood pressure, heart rate, breathing rate, and digestion. POTS patients’ sympathetic nervous system tends to be in overdrive, while the parasympathetic nervous system tends to underperform.  When our sympathetic nervous system is out of whack, we are more likely to struggle from debilitating POTS flares. Imbalance in one system impacts the other.

Conversely, improving the parasympathetic nervous system can improve the sympathetic response. Learning to calm down our bodies using techniques such as breathwork and meditation gives us back some control and ownership of our own bodies. These techniques help to manage the sympathetic stress response as one aspect of managing POTS symptoms.

• Breathing: Many people, especially those with EDS, would benefit from working with a neuro performance trainer/physical therapist/chiropractor/osteopath/physiatrist/etc. to make sure their breathing mechanics (including ribs) are proper and that the quality of their breathing is good. I also benefit from using the Relaxator breathing trainer.

• Meditation (I use the technique discussed in “Stress Less, Accomplish More” by Emily Fletcher, and Davidji’s guided meditations on Insight Timer; Calm and Headspace are also good resources).

• Binaural beats (I use NuCalm)

• Nature can reset and calm the nervous system (we’ve chosen to live closer to nature because of the incredible effect it has on our health and happiness)

• Hypnosis and DNRS can help to rewire the brain to respond in a safer, healthier way to stress. (I work with Dr. Marc Schoen, PhD for hypnosis; I have not tried DNRS but have heard firsthand of its benefits - but it’s time and energy intensive).

Counter-Pressure Maneuvers

Counter-pressure maneuvers can help to squeeze blood through the body and relieve POTS symptoms. Examples include: heel raises, squats, inversions (such as putting your legs and feet up a wall), squeezing or having someone squeeze your body parts, squeeze yourself into a ball, cross legs. It may also be helpful to sway your body, shifting weight back and forth from one leg to the other.

Vagus Nerve (Vagal Nerves)

The vagus nerve is the longest cranial nerve in the body, running from the brain to the large intestine. It is the main nerve of the parasympathetic nervous system (the “rest, digest, recover” system part of the autonomic nervous system). The vagus nerve carries signals between your brain, heart, and digestive system. When the vagus nerve isn’t functioning properly or optimally, the signals that are supposed to be carried through the vagus nerve can fail to reach their destinations as intended, leading to issues such as vasovagal syncope (fainting from low blood pressure), gastroparesis, nausea, vomiting, difficulty swallowing, etc. Learning to exercise and harness the power of the vagus nerve can be hugely impactful for managing conditions such as POTS. Some resources that I’ve benefitted from and exercises that I include in my routine are:

• "Accessing the Healing Power of the Vagus Nerve” by Stanley Rosenberg

• Vagus nerve reset by Dr. Perry Nickleston

• Gargle, hum, and sing for at least a few minutes every day

• Breathing exercises with exhales that are least 2x as long as inhales

• Tongue exercises (stay tuned for more info on this)

Vestibular System

The vestibular system is one of the most important input systems into your brain, providing information about body position and balance. If you have POTS, it’s most likely that your vestibular system is impacting the severity of your symptoms. In my experience, most medical providers - even those “specializing” in the vestibular system don’t have a strong understanding of the vestibular system, let alone that the vestibular system - and, therefore, POTS - can be drastically improved through training. My life has changed in magical ways since I started working with neuro performance trainer Steve Madama. If you want to have a valuable assessment of your vestibular system and go through effective vestibular training, I highly recommend getting in touch with Steve and seeing if he’s available to work with you, or looking into other Z-health-educated trainers.

Physical Manipulation

Maintaining proper spinal alignment can be critical for managing POTS. The brainstem, which descends through the base of the skull, is incredibly important for the function of the autonomic nervous system because it houses several processing centers, including those responsible for the cardiac, respiratory, and vasomotor centers of the body (these centers control things like heart rate and blood pressure). It is surrounded by the top two bones in the neck, C1 and C2. When these bones become misaligned, which may happen especially easily for those of us with hEDS, they can stretch and distort the muscles, ligaments, blood vessels, nerves, and cerebrospinal fluid in that area. When these areas at the base of the skull - which are affected by the alignment of the entire spine - are misaligned, this can negatively impact the function of the autonomic nervous system, and worsen POTS symptoms.

• Patients may experience relief from POTS symptoms when the C1 and C2 vertebrae are realigned by a physical therapist, osteopath, physiatrist, or chiropractor.

• Craniosacral therapy (CST) is another modality that can benefit POTS patients because it encourages balance between the sympathetic and parasympathetic nervous systems.

Movement

Movement is important because it encourages blood flow. Start small, even 30 seconds, and progress slowly. Be careful with long periods of standing, which can trigger a POTS episode. Listen to your body. Pay attention to how your heart feels. Remember that, while we tend to think of POTS as a condition of the autonomic nervous system, it is a condition that affects the heart. If you push through symptoms, you’ll pay for it (trust me!).

Physical Strength and Stability

As noted above, maintaining spinal alignment is hugely important in managing POTS symptoms. Key to maintaining this alignment is strength and stability throughout the center of your body. One of the most important players is your TONGUE! Working with neuro performance trainer Steve Madama to develop tongue strength, coordination, and control has been the biggest game changer for me in improving my posture, neck and head alignment, reducing/eliminating head and neck pain and weakness, reducing/eliminating TMJ pain, reducing/eliminating fatigue associated with head/neck/jaw injuries and instability, eliminating the feeling of “my head is too heavy to hold up,” improving my POTS symptoms and overall vestibular difficulties, and more.

Temperature and Climate

POTS patients often struggle with temperature regulation because the autonomic nervous system, which is dysfunctional in POTS, controls body temperature. Heat causes blood vessels to widen, which causes an increase in heart rate and other symptoms. Some patients experience POTS flares during hot weather or exposure to high temperatures (such as in a sauna or hot room).

• Be extra careful with extreme temperatures, especially extreme extreme heat and humidity.

• Consume sufficient amounts of water and salt/electrolytes, and consume hydrating foods.

• Keep a fan, spray bottle filled with cool water, and/or ice roller nearby.

• Embr wave is a new device designed to manage hot flashes, and is used by some POTS patients to help manage overheating. I have not tried the Embr wave.

• If you live in an area with extreme heat and/or humidity and the climate is negatively affecting your ability to live your best life, consider whether you are in a position to move elsewhere where your symptoms may be less severe. We decided to move to Southern California from Washington, DC because I feel TONS better here than I do on the East Coast - and, we’re so much happier here!

Eating

Eating and digestion can be incredibly challenging for POTS patients. Click here to read my general recommendations for managing your food life. For POTS-specific eating tips, I recommend:

• Consuming hydrating foods;

• Incorporating lots of sea salt or Himalayan pink salt;

• Consuming small meals. Eating large meals can worsen POTS symptoms because your body redirects a lot of blood to aid in the digestive process;

• Limiting consumption of carbohydrates. Some POTS patients may experience a lowering of blood pressure associated with a higher carb diet;

• Consuming a diet with high fiber and complex carbohydrates may help reduce blood glucose (sugar) spikes and lessen POTS symptoms. Poor blood sugar regulation can worsen POTS symptoms. Eating your food in the following order may help you to avoid blood sugar spikes and the symptoms associated with poor blood sugar regulation: veggies —> protein and healthy fats —> starches and sugars.

Sleep

During sleep, the sympathetic nervous system (the fight-flight-freeze response) gets to relax and take a break. Sleep deprivation causes sympathetic nervous system activity to increase, worsening the ability of the parasympathetic nervous system to help the body rest and recover, and worsening POTS symptoms. Read my general sleep tips here.

• Some POTS patients may benefit from raising the head of the bed to increase blood volume while you’re sleeping.

IV Saline

Intravenous saline can be a good option for treating low blood volume, which can be a problem for some POTS people. IV saline can sometimes be better, more effective, or more manageable than consuming adequate amounts of oral fluids. Sometimes patients can experience nausea and vomiting as a result of drinking liquids. Sometimes for patients with rapid gut motility, less water may be absorbed into the blood steam as it makes its way through the intestines. Also, for some patients, if blood volume is low but the ratio between red blood cells and plasma is normal, those patients may not be able to absorb fluids even if they are consuming large quantities per day. IV fluids bypass the digestive tract to eliminate issues with nausea/vomiting and gut motility. The saline goes directly into your bloodstream, increasing the plasma volume. A liter of normal saline can reduce heart rate and other symptoms like brain fog in a person with POTS when blood volume is low.

Drugs

While there are many lifestyle approaches and therapies that can improve POTS symptoms, sometimes medications are necessary. Everyone responds to medications differently, and it’s important to do your own research, to advocate for yourself, and to work with practitioners who you trust and who don’t push you to do things that go against your gut instincts.

• Many patients with POTS and other chronic conditions are very sensitive to medications and need to start with - and sometimes stick with - teeny tiny doses.

• Check out The Dysautonomia Project’s list of Top 20 Drugs used to treat POTS.

• Some POTS patients benefit from taking POTS medications during their periods, even if they don’t need to do so the rest of the month.

• Choosing to take POTS medications doesn’t mean that you shouldn’t also pay attention to the various lifestyle factors and therapies mentioned throughout this page. POTS is incredibly complex, and it’s important to try to address your symptoms from multiple angles.

Self-Care

Learn to listen to and stick with your intuition, learn what a safe amount of activity is - and don’t go past that. Pushing too hard will lead to a deficit of energy and you will pay for it. If you must push through something, be gentle with yourself, take extra precautions (i.e., extra salt, extra water, hydration supplements, nourishing and hydrating food, bag breathing, compression, etc.), and plan to have as much rest time as possible before, during, and after your activity.

Glucose and Absorption

• Glucose aids in the absorption of salt and other electrolytes. It can be tremendously valuable to consume electrolyte hydrating solutions that contain glucose. I would personally advise against conventional sports drinks like Gatorade or Powerade because they are filled with artificial sugars and chemicals that can cause other short-term and long-term health problems. I advise opting for products that are as pure as possible, with as few added ingredients as possible, and zero artificial sugars.

• Examples of products include:

  • SketchLabs

  • Liquid IV

  • NormaLyte