Ashley Rippentrop is my next guest for the Chronic Illness Support Guest Blog! You can find information Ashley has provided about POTS (postural orthostatic tachycardia syndrome), MCAD, autoimmune issues, autonomic neuropathy, chronic migraines, daily headaches, and sleep apnea as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.
Illnesses: POTS (postural orthostatic tachycardia syndrome), MCAD, autoimmune issues, autonomic neuropathy, chronic migraines, daily headaches, and sleep apnea
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
My name is Ashley, I’m originally from the Chicago area, but currently live in Columbia, MO and am 29 years old. I love to sing, dance, paint, write, and be in nature. My husband and I love to camp and hike and it’s our goal to visit all 59 National Parks in the US! I’m very passionate about health and helping people in their chronic illness journeys. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) when I was 26 years old, but had the disorder long before, undiagnosed. From the point when I began actively trying to figure out why I was fainting so much and having all of these mysterious symptoms, it took about 6 years to reach an official POTS diagnosis.
POTS is a form of autonomic dysfunction or dysautonomia, meaning your autonomic nervous system doesn’t work as it should. Your autonomic nervous system controls things we don’t think about like breathing, heart rate, blood pressure, digestion, kidney function, and so many other involuntary things. So when this system doesn’t work properly, it creates all sorts of problems. Symptoms of POTS range from mild to severe and can include (but are not limited to) dizziness, lightheadedness, brain fog, headaches, inability to regulate temperature, blood pooling in the lower half of body, standing intolerance, chest pains, GI issues, sweating irregularities, fatigue, and tachycardia. The criteria for POTS is met when a person’s heart rate jumps at least 30 beats per minute (BPM) higher than it was upon standing and stays high. It can also be associated with unstable blood pressure as well upon standing.
I had first heard about POTS from my friend Dallan who was talking about his friend and all these symptoms she had. I remember thinking, wow this sounds like my life. So I went home that night and researched POTS and everything seemed to click. I figured out how to get tested, made an appointment and sure enough, I had POTS.
If after reading this, you suspect you might have POTS as well, talk to your doctor about looking into autonomic testing. Autonomic testing involves a breathing test, a sweat test and a Tilt Table Test. During a Tilt Table Study, the patient will begin lying down on a hospital bed and will stay there for 5-10 minutes, bringing their body to rest. Then the patient will be tilted to an upright position for about 10 minutes and the doctor will monitor their heart rate and blood pressure. If there is an increase of 30 BPM or more, POTS may be diagnosed.
How long did you suffer with symptoms before you were diagnosed?
I have had some of my POTS related symptoms since I was a kid but things really began to develop when I was 14 after getting a concussion and fainting for the first time. I had suffered with symptoms for 12 + years until I got my official diagnosis at age 26.
What treatments have you tried? Did they help? Did you have side effects? Etc.
For POTS, I have tried midodrine (still on), Northera, carvedilol (also still on), fludrocortisone, salt pills, drinking 2-3 liters of water a day, electrolyte mixes, IV fluids, and bisoprolol. I had horrible side effects from Northera and bisoprolol. Midodrine and carvedilol help me the most medication wise and I really have minimal to no side effects with them. Together, they help prevent fainting episodes and control my heart rate and blood pressure fairly well so for that I am thankful. I also drink a ton of water (2-3 liters daily) so mixing in electrolyte packets helps me with maintaining a base level of hydration. Liquid IV, Normalyte, and Banana Bag are my favorite.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
Hard to name just five because there are plenty more, but I would say my faith in Christ, singing, memes/humor about my illness, Grey’s Anatomy, and nature.
Do you have other illnesses? If so, would you like to mention them? What are they?
Yes. I have an underlying autoimmune disease (suspected Sjogren’s) that is likely causing my POTS. I also have MCAS (mast cell activation syndrome), autonomic neuropathy, chronic migraines, daily persistent headaches, sleep apnea, and a few other things.
What is something you wish you would have known when you were diagnosed?
That POTS is rarely ever just POTS and it’s important to search for a root cause and other comorbidities (or associated conditions). Dysautonomia International has a good list of potential root causes and/or associated conditions here. Some of these include Ehlers Danlos Syndrome, mast cell activation disorder, lupus, amyloidosis, sjogrens, and a multitude of other things. It’s so important to look for a root cause because that can help you better target treatment. If you’re able to find something causing the POTS, and if it is treatable, then by treating the root, you may, in turn, help your POTS symptoms improve as well.
How does it affect your daily life?
There isn’t a day where I don’t have to think about this condition. It affects the way I plan and my ability to commit to things. It also affects traveling, my ability to drive, my stamina to exercise, and my ability to work. I always need to know if there is seating, what the temperature will be like if an event is outside, if there is access to water, etc. One of my most inconvenient symptoms is my standing intolerance and blood pooling. I usually get 5-10 minutes before I’m really not feeling good and need to sit or lie down and that’s with me bouncing a bit and making sure I’m pumping blood up to my brain. Standing room only situations like cocktail parties that often precede weddings are tough for us POTSies and I end up having to bring a portable stool or something to make sure I can sit when I need to. I get overheated very easily and my body does not sweat properly so it has trouble cooling itself. I bring spritz bottles of cool water with me on walks in the Summer and I keep a section of our freezer stocked with cooling aids. My headaches are constant and the migraines are often so I also use headache hats and ice packs to help my head pain. Bad migraine days coupled with bad brain fog affect my ability to drive and to do much in general. The heat and humidity makes my tachycardia go nuts, the bright sun and heat brings about migraines, fatigue and dehydration, and extreme temperatures flare up my neuropathy. All of these symptoms have impacted my ability to work a typical job so I have had to get creative and thankfully, I have figured out some things I can still do and am navigating a new career path currently.
I try to take each day and each hour as it comes, having some things up my sleeve to counteract my body’s reactions to things. I have learned to listen to my body and to give it rest when it needs it, or it will make me rest. I try to keep an active lifestyle and get exercise when I’m able, but some days are just “bed days” and I’ve learned to be okay with that too.
How are you doing now with symptoms etc.?
I still have symptoms every day which vary from tolerable to severe. Each day and each hour is different. My fainting and heart rate are fairly well managed, but my headaches and migraines are still something I really struggle with. There’s usually 2-3 symptoms each day that fight for that top spot of worst symptoms (ex: one day it could be migraine, brain fog and fatigue while another day it could be chest pains, mast cell reactions and GI issues). Regardless, there are always a few symptoms at the forefront. I have found some ways to better manage and am on a decent daily regimen. Finding out other illnesses I had along with POTS helped immensely in terms of improving my treatment plan. Working from home, where I have the flexibility to lie down whenever needed or rock my ice caps for my headaches, has been huge. I’m currently in the process of getting a new, promising treatment approved for my autoimmune issues so I’m hoping that will be a game changer.
Is there any other information you would like us to know about your illness?
POTS is not rare, but is not well known and still needs so much more awareness and research.
There are currently no FDA approved medications used to treat POTS, hence why we need more research.
It is typically not life threatening, but is life altering.
What piece of advice do you want to give listeners?
Just because someone looks fine, doesn’t mean they are. We should be quicker to seek to understand than to criticize or judge. Be patient with yourself and give yourself grace and the space to rest.
How can someone show support (awareness colors/ribbons, etc.)?
The awareness color for POTS/Dysautonomia is turquoise and the month of October is awareness month! You can show your support by learning more about this condition and donating to the POTS research fund (CurePOTS.org). There are some annual fundraisers and races including Race to Beat POTS in Philadelphia and the Boston POTS Walk, held in Massachusetts. Visit Dysautonomia International to learn more.
Additionally - my husband and I have been working on a documentary about POTS for the last couple of years (trailer out August 18th). It is our hope that with our film, we can help raise more awareness about POTS, encourage more doctors to specialize in these types of disorders, raise research funds for POTS, and help other POTS sufferers not feel alone. You can follow my Instagram for updates on that to show your support!
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Readers are welcome to email me with any questions they might have about what I said or how to get diagnosed with POTS.
FB: Ashley Rippentrop
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.