What is Postural Orthostatic Tachycardia Syndrome (POTS)?

Here is a good description from the Cleveland Clinic Website. Click the link below for more information.

"Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.

Each word of “postural orthostatic tachycardia syndrome” has a meaning:

Postural: Related to the position of your body.

Orthostatic: Related to standing upright.

Tachycardia: A heart rate over 100 beats per minute.

Syndrome: A group of symptoms that happen together.

Normally, your body’s autonomic nervous system balances your heart rate and blood pressure to keep your blood flowing at a healthy pace, no matter what position your body is in. If you have POTS, your body can’t coordinate the balancing act of blood vessel constriction (squeezing) and heart rate response. This means that your body can’t keep your blood pressure steady and stable. This causes a variety of symptoms.

Each case of POTS is different. People with POTS may see symptoms come and go over a period of years. In most cases, with adjustments in diet, medications and physical activity, a person with POTS will experience an improvement in their quality of life.

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

"I just got diagnosed with POTS, what do I do?"

Here are the things that I have found to be helpful in my journey. Everyone is different and it is imporant to find what works for YOU. I am not a medical professional - seek appropriate medical care and advice.

• Find a reallllly good doctor. One who listens and cares. A doctor who knows what POTS is and how to treat it effectively.  If someone tells you this is in your head or that it is just anxiety - walk out of that door. Anxiety is real, anxiety is part of it but this is much more that and it is NOT in your head.

• Get the right medication for you. POTS patients typically need need a low-dose steroid such as fludrocortisone to boost their blood pressure and a beta blocker to lower their heart rate to reduce symptoms. 

• Look for other conditions that are adding to the problem. Most people with POTS have other things going on that add to it and complicate it. Mine are Mast Cell Activation Syndrome and Sjogrens Syndrome - as I have treated those my POTS has improved significantly. Others have a condition called MALS where a ligament is restricting their blood flow. Still others have thyroid issues, auto-immune issues, endocrine issues, etc. Many times something as serious as a concussion or simply having a baby can trigger POTS. Extreme, chronic stress will trigger POTS. Find your cause and treat it.

• Hydration, hydration, hydration. Dehydration is your enemy. Drink 4-5 liters of fluid a day and greater than 50% of that needs to be an electrolyte solution. People with POTS (especially if they are on a steroid) easily flush out important electrolytes from their body and can get worse if drinking that much straight water. Don’t use something like Gatorade that is high in sugar which will actually make things worse. I use Normalyte (Normalyte.com) and drink 2 Liters of it every single day even if I don’t match that in plain water. If I don’t I go downhill very fast.

• 30-40mmhg open toed  compression socks from toes to waist all day but not at night. Any other body/even arm compression garments you can find can help too. Buy a blood pressure cuff and monitor it and you can adjust your compression as needed. Don't skimp on this - "compression socks" from Walmart will do nothing for you. Ankle socks will do nothing for you. If you are serious about getting better full length, toe to waist, high compression is important. It can be uncomfortable, it's not fun but neither is feeling sick all of the time.

• Low impact exercise - biking, swimming, weight lifting. Start recumbent if biking. Isometric exercises seem really dumb but actually a lifesaver. There are physical therapists who work with people with POTS to create an exercise program.

• Good solid adequate sleep. Seriously. Like early to bed every night and a full night every night. Your body is good at repairing itself but needs time to regenerate and rest and repair.

• Lower stress - if your body is in constant fight or flight mode it gets stuck there and POTS symptoms are exacerbated. Fight or flight changes your heart rate and blood pressure. Your body cannot calm down. It needs to feel safe to calm down and heal and stabilize your vitals. Plan as far in advance as you can to avoid stress and have as many tools listed here as you need with you.

• Diet - work with doc to determine sensitivities and triggers. Most people with POTS are worse off with any sugar. Because I have another condition that adds to it I am sugar free, starch free, gluten free, grain free, etc. the name of the diet I am on is called the Specific Carbohydrate Diet recommended by my doctor - however it is based on my MCAS and may not be exactly what someone else would need without MCAS. But sugars affect heart rate and blood pressure so try to cut those out where you can.

• Don’t eat huge heavy meals - they lower your blood pressure as the blood is diverted to your stomach to process all of it.

• Eat lots of salt. But be smart. I had a doctor say to ear potato chips and fries for the salt. 🤦🏼‍♀️ but really pour lots of salt on your food. People with POTS don’t get or retain enough salt. When I am having bad episodes I put straight salt under my tongue. Do get appropriate medical help. Salt can be hard on your body, especially your kidneys and if you have a history of kidney problems you will need to address this.

• Vitassium/Salt Stick chews have been a lifesaver - they have a lot of salt and potassium and other electrolytes that are critical to heart rate and blood pressure stability and are made for people with POTS. I have some with me at all times. 

• Use a mobility aid until you get stronger - wheelchair or Walker or cane, etc. don’t be afraid to use resources like a disability parking pass to limit how far you have to walk when you’re struggling. Don’t be ashamed of that or feel bad for that. People may judge you for looking like a young healthy person and parking there or for using a mobility aid but that is their problem. You have to take care of your health and hold your head high and remind yourself they don’t know your situation and you have to take care of you and surround yourself with people who support you.

• Use a shower chair. You can sit on the chair and put your feet up on the sides of the tub or the walls and it helps to not feel like you are going to pass out while you are showering.

• Adjust if you have temperature sensitivities. Heat is a vasodilator and makes your blood pool that much faster. Heat makes me very sick - in the summer I dress to keep cool, take a cooler bag with ice packs everywhere I go, drink cold water, carry a rechargeable fan, use an umbrella on really hot sunny days etc. Don’t take piping hot showers. Take them as cool as you can while still being comfortable.

• Fight laying down all of the time - it makes you feel better in the short run but keeps you from improving in the long run. Find a balance and push yourself when you can but rest when you need to. Consider raising the head of your bed a few inches so that even when you are laying down or sleeping your body has to work a little hard and get stronger.

• If you have sensory symptoms consider using ear plugs to block noise or wearing sunglasses to block light even indoors! Close your eyes when there is too much movement around.

• If you are a woman, plan on your menstrual cycle making things worse. There are parts of my cycle I feel amazing and don't have to do much, but there are other parts where I have to take all of the steps above and work hard to stay on top of it. Become aware of how it affects you. Also if you are planning a pregnancy consult a good doctor that understands your condition. Try to see a Maternal Fetal Medicine doctor who can monitor you and your baby closely. Some POTS patients improve drastically while pregnant while others aren't affected or regress drastically. It definitely is possible but consult with your doctor on what meds are safe for a baby and how to control your condition.

I know this is so so much. But start with what you can do and add and try things to see what works and what doesn’t. 

How Biking Helped My POTS

Other Resources

I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia in 2017.

I want to share my experiences and be a voice of hope for those who suffer. If you "Google" POTS you will quickly be discouraged and find lots of things that will make you want to give up. But there is hope!

This website has a lot of great resources for those suffering with POTS or other forms of dysautonomia: 

https://www.dysautonomiainternational.org/ and their Facebook Page:

https://www.facebook.com/DysautonomiaInternational/

If you live in Utah - here is a more local support page:

https://www.facebook.com/groups/DysautonomiaInternationalUTSupport/

This is a great POTS story of hope: 

http://www.potstakeastand.com/about_us