Let’s Dish About POTS

Kimberly Zapert avatar

by Kimberly Zapert |

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EDS and heart health

Many people with Ehlers-Danlos syndrome (EDS) experience a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). Dysautonomia is a disorder of the autonomic nervous system, which controls the body’s subconscious functions including digestion, heart rate, perspiration, and breathing. Symptoms of POTS, predominantly an elevated heart rate, are induced by standing up or remaining in an upright position. 

Doesn’t everyone’s heart rate increase when standing up?

An increase in heart rate is a normal response to a change in position. Blood will settle at the lowest level possible if the body is in a supine (horizontal) or seated position. However, the brain needs blood at a higher elevation if it is to receive oxygen and nutrients. Going too long without an adequate supply of oxygen will result in a shutdown of neurological functions.

To pump blood to a higher elevation, blood vessels constrict and the heart beats faster. People may get lightheaded when they stand too quickly, but equilibrium is restored within a matter of seconds. However, people with POTS experience a greater elevation in heart rate. Furthermore, the body is slower to return to a state of equilibrium.

Eighty percent of people with EDS experience POTS or some form of orthostatic intolerance. About 33 percent of people with POTS also have EDS.

POTS can be debilitating

POTS includes a wide range of symptoms, such as shortness of breath and headaches. Some people, myself included, experience nausea or severe cramping when standing. I also experience brain fog and dizziness. Others even faint.

Living with POTS has been described as like having the flu. POTS adversely affects my quality of life and compounds, and is compounded by, EDS.

Currently, there is no cure for POTS caused by EDS. However, there are countermeasures and treatments available to lessen the severity of POTS symptoms. These include:

  • Hydration and electrolyte replacement: I drink plenty of fluids and eat a diet high in sodium. I am able to stay hydrated on my own, but some people may require IV fluids.
  • Compression garments: My body cannot constrict blood vessels on its own, so I wear garments that compress my limbs and aid in the constriction of blood vessels. Compression garments help my body keep fluids where they are supposed to be.
  • Medication: My doctor prescribed a beta blocker to slow my heart rate. It took me a while to adjust to the effects of the medication, but moving slower and letting my heart catch up to my level of activity is better than chest pain and a heart like a galloping horse. Some people may be prescribed a steroid. Make sure to consult with your doctor before taking any medications.

Your turn

Please share your strategies to combat POTS in the comments below so that we can share notes and learn from one another.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

j bandola avatar

j bandola

Transcendental Meditation has dramatically helped my severe symptoms of POTS. I had daily chest pain and pain in my legs with extreme fatigue before I started meditating. I strongly suggest anyone having POTS symptoms to try Transcendental Meditation. It really helped me.

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Kimberly Zapert avatar

Kimberly Zapert

I’m glad you’ve found something that helps you!

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Sue Dill avatar

Sue Dill

My daughter suspects she has EDS with POTS. We need to find a doc in NE Ohio, or anywhere, who can diagnose her. There is a plethora of docs on the internet, but we need recommendations from EDS patients. My daughter is 23, has hypermobile joints and severe arthritis in her knees. She has fainted several time and has a rapid heartbeat. The Cleveland Clinic isn’t taking new patients.

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Alex avatar

Alex

I'm 33 white male, hyper mobile ect going for genetic testing next month (April 2021) at Dayton Children's in Dayton Ohio.

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Kimberly Zapert avatar

Kimberly Zapert

I hope you everything goes well for you! Whether testing rules things in or rules them out, it's valuable information for you and your doctor, nonetheless (for example, one of the criteria for hEDS is a rule-out of other connective tissue disorders).

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Lisa avatar

Lisa

I also have EDS with POTS and it's a roller-coaster of a ride! A Dr once took me off beta-blockers saying I didn't need them, and put me on a different blood pressure medication. My blood pressure shot up to 160/100 just going to my car, and my heart rate skyrocketed. After two weeks of arguing with him, because my BP and HR would return to normal by the time he would examine me, I went to the ER and got a second opinion. I'm back on beta-blockers, now, lol. Still, I have to be careful getting up, taking a shower, or anything else that might cause me to pass out.

It still amazes me that after a lifetime of surgeries and all measures of assorted medical issues it took my Chiropractor to recommend I see a geneticist to confirm his diagnosis of EDS at age 56!! And I live just outside Boston where many of the greatest minds in the medical community are! The medical professionals in this country are a disgrace with small exception, due to the inept ruling of the AMA, governed by bureaucrats who have never practiced a day of medicine in their lives. God bless and may each reader never stop searching for that which helps them.

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Kimberly Zapert avatar

Kimberly Zapert

I’m so glad that you finally got a diagnosis and are again receiving the medication that helps manage your symptoms!

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Maritta avatar

Maritta

I’ll like to know what kind of doctor do you go to? My daughter has EDS and we just find out she has POTS too not as severe but the nausea, the dizziness and fainting and all the doctors though she was fine or had no explanation please help me,

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Kimberly Zapert avatar

Kimberly Zapert

I was diagnosed with POTS by my cardiologist. Talk to the doctor who diagnosed her with EDS and ask what he/she recommends. Good luck!

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Sinead Grendon avatar

Sinead Grendon

My son at 15 has just been diagnosed with Pots and elbar danlos Syndrome. He has been suffering mainly with severe migraines and stomach sick some dizzy spells but they have settled with meds. Would u suggest with migraine and how do you find exercise. It brings on the migraine for him everytime even just going for a walk with his dog is near impossible at present.

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Kimberly Zapert avatar

Kimberly Zapert

I’m sorry that he’s having such a difficult time! I would ask his doctor for his/her specific recommendations regarding exercise. If you’ve already asked for recommendations and they didn’t work out, let the doctor know what you’ve tried and ask for new suggestions. I know its frustrating when you hear from every angle “get more exercise” but then you’re still left with “how?!” There aren’t easy answers.

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Heather avatar

Heather

I'm in Canada about 1 hour from Toronto. I believe my brother and I were both born with EDS of some form. He was born legally blind knowing by preschool age he would never drive a car. I was born with life threatening asthma. I believe Myself and both my children have EDS. I'm 43, they are 18, 20 and their joints are severely damaged and this is going to end their career goals of being in the Military and Navy. I've had 7 surgeries already and need at least 4 more. I need full knee replacement for both, Cervicogenic headaches, migraines,tension headaches, bunions, ganglion cysts, all cysts on left side of body only,hypolordic neck from 2 whiplash accidents, full hysterectomy, endometriosis, adenomyosis, My Dad has prostate cancer,hoarders, gout, arthritis, HBD, diabetes, cognitive impairment. My Mom has breast cancer,fibro, uterine fibroids, full hysterectomy, rheumatoid arthritis. All both my grandma's died of breast/uterine cancer,Pots, Grandfather died Massive Heart Attack, other Grandpa died if Alzheimer'sbladder prolapse, dyspareunia, hypertonic pelvic floor with entrapped pudental, illioguinal nerve, hematomas, anal fissures, hemerroids, placenta detached when I delivered my daughter,tendonitis everywhere, costochondritis, tinnitus, throbbing calves, brain fog, cognitive decline, short term memory issues, Its a 2-3 year waiting list to be seen at the EDS clinic in Toronto, adenomyosis, Pots, I think EDS vascular, I'm losing my macular vision. I'm taken 40 years to figure this out. My joints went late teens, my fertility,hormones, thyroid etc. I need to get this figured out asap for My Kids, niece so they can helped before it's too late for their joints. My Daughter needs both knees Completely rebuilt at 18. Her back is Hypermobile in the facet joints, so are My Sons. What is the fastest way to confirm a diagnosis? What should I recommend for my kids in the meantime. My daughter and I are both off work. I'm degenerating at a very alarming rate just in the last 4 months. None of my meds are working, THC is the only thing that is working for pain management. My nerve blocks in my neck/head went horribly wrong in Feb, 2 weeks in a row and my body crashed. The pain keeps me awake 35 hours at a time if I'm not fully sedated. Weather is my only trigger for headaches. Both my daughter and I are patients at Women's College Hospital Headache Clinic.

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Kimberly Zapert avatar

Kimberly Zapert

I’m really sorry you’re going through this. I completely understand wanting to find answers for the sake of your children. It’s a lot to deal with and on top of all the physical stuff, I’m sure you get emotionally overwhelmed at times, too! It can be a vicious cycle: pain and illness are stressful and the stuff the body produces/overproduces in response to stress isn’t always helpful, and if the pain worsens, then that results in further stress about one's own condition and then there’s the worry about taking care of everyone else, too. Well, at least that’s been my experience.

I’m not a healthcare professional and can’t offer specific advice, but I think it’s safe to encourage you to take time for some self-care. For me, it didn't erase my pain, but helped to break up that cycle and bring the pain down to a more manageable level. I hope that you find some relief and that it's enough for you to be able to look at the big picture, identify your goals, and think through your strategy while you're on that waiting list. In the meantime, try to get in to another geneticist sooner, if possible. Any physician can diagnose EDS and send you to specialists to treat problems as they arise, but a geneticist would be needed to rule out other possible genetic disorders or specify which type of EDS.

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Debbie Rose avatar

Debbie Rose

My 36 year old son has EDS and POTS. I had Cutaneous T-cell Lymphoma which is an autoimmune disease and stomach problems. I am wonders if there is any correlation?

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