When a respiratory virus turned into a mystery illness, 16-year-old Hannah Aspden found herself dealing with debilitating symptoms. Daily tasks became difficult, and her normal routines started to fall apart. Three months later, she was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).

Swimming has always been a large part of Hannah’s life. Having been born without her left leg, Hannah began swimming at age four. After swimming for twelve years, Hannah has worked her way to the Paralympics. However, keeping up with a rigorous practice schedule in addition to attending school became difficult after her POTS diagnosis.

“In the beginning, I had extreme exercise intolerance which made it impossible to keep up with my usual training schedule,” Hannah said. “Each day can be very different from the one before it. Pushing through the aches and pains and “uncontrollables” has been difficult, but to me, it is worth it.”

Like many POTS patients, it took time for Hannah to adjust to her new normal. As she dealt with her new diagnosis, she tried to focus on both her school work and swimming. Many POTS patients find school difficult, especially the early mornings when symptoms are often worse. For Hannah, her symptoms included difficulty with concentrating and memorizing facts. However, according to Hannah, her symptoms are “definitely a lot better now” than they were when she was first diagnosed.

A regime of medication, increasing salt and fluid intake, and exercise has improved Hannah’s symptoms. Throughout it all, she remained determined to continue swimming.

After countless hours of practicing, Hannah made it to the Paralympic trials, which determine which athletes will compete in Rio this summer. When she was at the trials, Hannah said she repeated the phrase ‘Just keep swimming…just keep swimming…what do we do? We swim’ from Finding Nemo to remind herself to keep going even when things were difficult.

“I tried to set an example and encourage those newer swimmers to just follow their hearts and have fun with all of it,” Hannah said. “And of course, I was really hoping to swim well enough to make the team for Rio.”

In Rio, Hannah will get the chance to meet with athletes around the globe. In addition to representing the United States at Rio, Hannah is excited to represent parathletes.

“The experience of being there with Team USA and getting the incredible opportunity to represent my country on such a large stage is what I am most excited for,” Hannah said. “Spending time with my teammates and coaches, racing, and learning as much as I can will be so much fun! Helping progress the Paralympic Movement here in the U.S. is truly something I am blessed to be a part of.”

Throughout everything she has experienced, Hannah’s perseverance has pushed her forward. Her love for swimming and acknowledgement of the support she has encouraged her to ‘just keep swimming.’

“Knowing that my passion for swimming hasn’t faded through the years is such a motivation to keep going,” Hannah said. “I’ve been given a very rare and wonderful opportunity in life, and it gives me the chance to represent my country, my team, and all that we stand for. It is something that I could never take for granted. Knowing that I have teammates, coaches, family, friends, and others I may never have even met that support me unconditionally really means the world.”

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13-year-old Will Kenney and his mother Sandy Kenney recently reached out to Dysautonomia International with a unique proposal. They wanted their third annual “Will’s Carnival for a Cause” at Chick Berry Farms in Laurel, Delaware scheduled for August 6, 2016 to benefit Dysautonomia International. We caught up with Will recently to learn about Will’s inspiring efforts.

Q: How did you come up with the concept for Will’s Carnival for a Cause?
A: In January 2014, I decided that I wanted to do something productive with my summer break instead of watching TV and playing video games. My mom was sharing Facebook posts about a two-year old girl, Stella, who has Sturge Weber Syndrome. Stella and her family donated the book “Sam’s Birthmark” to local schools and libraries and super hero capes to children at A.I. Dupont Hospital. Stella and her family inspired me to want to help raise awareness and funds for the Sturge Weber Foundation. I also wanted to organize an event that Stella could enjoy. That’s how I decided to host the first Carnival.

Q: How long have you been organizing this event?
A: This year’s Carnival is my third event. Planning for the Carnival takes approximately six to nine months.

Q: What made you want to add Dysautonomia International as a cause you wanted to support this year?
A: The Carnival has been a huge success for the past two years, raising over $15,000 to benefit the Sturge Weber Foundation and raising much needed awareness.  I have a friend, Rita Chandler, who helped with the Carnival last year, who has postural orthostatic tachycardia syndrome (POTS). One of my mom’s cheerleaders, Crystal Caldwell, also has POTS. I had never heard of POTS before, so I reached out to Dysautonomia International to learn more.  After learning about POTS, I decided to include Dysautonomia International as one of the organization’s we’re raising money for this year.

Q: What kind of attractions do you have at the Carnival?
A: The Carnival features games, a petting zoo, a hayride, pony rides, a duck train, a DJ, a bounce house, a dunking booth, food, face-painting, and a silent auction. The first Carnival had 16 games and the second Carnival had 23 games. I am planning on expanding this year’s Carnival to include seven new games, more entertainment, and rides. I am working on making the Carnival bigger and better to support the causes that are important to me.

Q: How many people attend the Carnival?
A: The first Carnival had 150 guests, and the second Carnival had 300 guests. During both years, I had about 50 volunteers helping with the event.  We hope even more people will come this year!

Q: Do you have any advice for other teens who want to start a fundraiser for Dysautonomia International?
A: Organizing and planning a fundraiser for an organization gives you a rewarding feeling because it gives you a chance to help and make a difference for so many people in need. I recommend thinking about an event that the community would enjoy and also one that would be fun to plan. I have a notebook that I use to continuously jot down ideas until I am ready to approach each one of them individually. Also, remember to get your community involved. Last year, we invited Miss Delaware, Brooke Mitchell, to join us at the Carnival. She was excited to be a part of it, meet the attendees, sign autographs. My local Councilman, Rob Arlett, volunteered to get in the dunking booth. I also recruited my football team and coaches to help. The football players especially loved it because they were helping move a great cause forward. My coaches also got in the dunking booth which was doubly fun. The Carnival has been so much fun to plan and it was a great way to meet a lot of wonderful people.

Q: If someone wants to donate prizes or volunteer during this year’s event, how can they contact you?
A: You can make a silent auction donation or a prize donation for the children’s games by contacting me via my Facebook page, Will’s Carnival for a Cause. You can also email me at skenney86@yahoo.com. I am looking for rides and entertainment such as clowns, magicians, jugglers, etc. I welcome all your ideas and help!

Q: How can people attend the event? Do they buy tickets in advance and/or on site? How can we learn more about or get involved with Will’s Carnival for a Cause?
A: To learn more about Will’s Carnival for a Cause, like and follow my Facebook page. I am very excited about this year’s Carnival. The Carnival is scheduled for August 6th, 2016 from 4pm-7pm. It will be held at Chick Berry Farm in Laurel, Delaware. Wristbands are $10 each which covers children’s games, rides, and activities or tickets are $.50 each. Wristbands and tickets can be purchased on site at the Carnival.

As my friend Ruth Ann Marvel said, “Raising money is great, but raising awareness is priceless.” And, as I have learned, one person can’t move a mountain, but a village can. So, come be a part of my village.

We love this kid. Thanks Will, we’ll see you on August 6th!

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Last month we introduced you to the 2016 Dysautonomia International Summer Research Interns.  This month we’re pleased to announce that Ms. Emily Deaton will be interning with Dysautonomia International’s Board of Directors this summer, helping with writing projects, educational programs, web development, conference planning, and more.

Q: Tell us a little bit about yourself.
A: My name is Emily Deaton and I’m majoring in English with a minor in nonprofit studies at James Madison University in Harrisonburg, Virginia. I’m 20 years old and have lived in Virginia for most of my life. I love writing, editing, and spending time with my family (and pets).

Q: What motivated you to get involved with Dysautonomia International?
I’ve had POTS for four years, and Dysautonomia International was one of the first resources I came across when I got diagnosed a year after getting sick. Ever since then, I’ve tried to learn as much as I can about POTS and have worked to advocate for myself and for others with POTS and other chronic illnesses.

Q: How do you balance your school and work activities with your health?
A: It’s difficult! I’ve had to learn when I can push myself and when I need to take a step back to skip out on a social event to ensure I can go to class the next day. There will still be days where I push myself too hard and have to pay for it the next day (or three). Having a supportive network of friends and family has made all of this much easier, however, and I’ve also been lucky to have professors who have accommodated me.

Q: What are your plans after college?
A: I want to continue to advocate for those with chronic illnesses. I’d love be a copy writer at a nonprofit in order to educate others about how to be as well as possible while living with life-altering conditions.

Q: What do you hope to get out of the Dysautonomia International Internship?
A: I’m looking forward to learning the ins and outs of a nonprofit, and I’m also hoping to learn how to better reach people who are in need of resources to better deal with their condition(s). I want to be able to use my communication skills to connect with patients and educate people who are unaware of what dysautonomia is.

Q: If you could give one bit of advice to a newly diagnosed patient, what would you want them to know?
A: Know you’re not alone. There will be good days and bad days, but you will learn to live a new normal. Seek support from doctors, friends, and family; you know your body best, so trust your intuition. If you need to rest, know it’s okay, and you can still live a meaningful and happy life.

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When I was twelve years old, I became sick with the H1N1 flu virus, walking pneumonia, and mononucleosis all within three weeks of each other. Because of this, my body stopped being able to regulate my autonomic nervous system and I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Subsequently, doctors found that I also had Ehlers-Danlos Syndrome (EDS) and mitochondrial disease, which I had from birth, but had gone undiagnosed. I was told these illnesses are chronic, and I will have them for the rest of my life. Coping with this was very difficult, especially because I was too sick to go back to school. If I never had these experiences, I would have never become the strong person I am today, and this is why I want to share my story.

I was bedridden for three years, and during this time, I was barely able to do any schoolwork, let alone go out and be with my friends. This was the most difficult time of my life, not just physically, but emotionally. When I first got sick, I received get-well-soon notes from my entire grade, and people would visit on the weekly basis. But as time went on, people moved on, which now looking back on it, makes sense. But at the time, it was utterly heart-breaking. I still am so grateful for those that were thoughtful enough to stay in contact with me, and I no longer hold any ill-will towards those that I considered my best friends, who seemed to just stop caring one day.

Back then, I thought it was all their fault, and if my friends really cared about me, they would stop by, or at least text.  Now, I realize I wasn’t helping the situation either. I was so depressed that I would never initiate the conversation. I would never send a message on Facebook to my best friend of six years and say, “Hey! How are you doing?” Or call them up just to see what the latest gossip was in middle school. I was so paranoid (because of so many doctors telling me that I was “faking it” and that “I wasn’t really sick”) that I had it stuck in my mind that the reason my best friend “abandoned me” was because her parents were doctors and they told her that I wasn’t really sick.

Needless to say, that friendship faded, along with many others. And because of this, most of my interactions with other people were all medically based, whether that be with doctors, therapists, or community groups. After a while, I forgot what it meant to be human, and all I knew was my illness ⎼⎼ I was my illness. I could name the latest and greatest of what was happening in the medical world, which doctors were becoming more or less popular, and which medications “were looking promising for individuals that experience certain POTS symptoms.” I don’t think I need to even say that after three years of this, if you put me in a room with healthy teens my age, I would be completely lost.

Finally, that day did come, and it was on my first day of high school. I went into my first day freshman year thinking I was the coolest person ever, and that I would rule the place. I thought I would have an advantage over the rest of my class because I had already done 9th grade once, and I would be older and much wiser than everyone else. This was not the case, in either aspect.

My family and I wanted to find a high school that would be fit to all of my needs ⎼⎼ small class sizes, understanding teachers, and NO STAIRS ⎼⎼ and The Nora School fit perfectly. They were nice, accommodating, and I fell in love. I thought the transition would be a breeze. To a certain extent, I was right. I got along with all of my teachers splendidly, and the administration loved me. The students, well… that took some work. Now let me get this straight, The Nora School is a family, and I never got a sense of anything different, but making friends can be hard, especially when you have been out of practice for a while.

Like I said earlier, I had lost contact with most of my friends when I was 12, and at this point, I was 15, so not only did I not know how to talk to teenagers, but I was crippled by the fear of being abandoned by them when I eventually told them of my illness. So with this in mind, I did my best to “act normal” in my first few days of school. This did not work out well. Not only did I not know how to “act normal”, but I also was completely unsure of what “normal” was for a teenage girl.

I was annoying, bossy, and a kiss-up my first few weeks of school, according to my now friends. Yes! Did you hear that!? I made friends! It took a while, and the fact that I never saw anyone from school outside of school made it take longer, but I made friends! Honestly it took a few years to build up these friendships to the point where I can say that I will be close with these people far after we graduate high school.

After the first few days of freshman year, when I saw that my humor, and all around good charm of acting like a middle schooler wasn’t cutting it, I started to observe. I wanted to understand the beast that we call “a teenage girl” before I committed to spending time with it. The main thing I observed was that they always are complaining about things, that to me at the time, really seemed like luxuries. In my first week, I specifically remember a classmate talking about how she was “soooo bummed” because she broke her nail and she was having guy troubles. In my mind, I was furious. How could someone like that think that they are having the worst day ever when I was in about ten minutes going to have to go into the bathroom stall and change the padding around my G/J tube because it constantly leaked this smelly, gross, liquid. I couldn’t find myself able to relate at all to what they were saying.

What I did was I find something that we could have in common. Many of you may have heard of the show, Supernatural. It’s great, if you haven’t watched it, like me at the time. The majority of the girls in my class loved the show, so over the course of about three weekends, I binge watched the entire show on Netflix and when I went to school the next day, I had something to talk about with my classmates. This gave me an immediate connection with them that I couldn’t find before. Now, I would take this with a grain of salt, and I am not asking you to go out and do what everyone else at your school does because that could take you into dangerous territory. But, instead of looking at the big picture of a person, and the things you don’t have in common, focus on what you do, and expand upon that. I used Supernatural as my way in, and once I was able to establish a rapore with my fellow classmates, it then became easy to see who I would be able to have that natural friendship with.

It is sometimes difficult to decide when or who to disclose your medical problems to, if at all. Personally, I live by the philosophy of not talking about it unless someone asks. If they do ask, I will be completely honest with them about my experiences. For example, in my first week of high school, I didn’t tell any of my classmates about my condition until one day when we were all supposed to go on a hike as a bonding experience and I had to sit out for medical reasons. My future best friend asked why I wasn’t going on the hike, and I first said, “Well, I have some medical problems that make it hard for me to do physical activity.” Of course, she asked (in a very nice way) what I had, and I told her, and the rest is history.

I found that it is important to always give people a way out of that conversation. You never know what that person may be going though and they might not want to hear your story at that time, and that is totally okay! They may ask if they could talk to you about it later, or maybe they won’t say anything because your brief description is all they needed/wanted to know at that time. Don’t take it personally if they don’t seem interested.

Also, if you don’t feel comfortable talking to someone about your personal medical issues, remember that they are called personal for a reason. We all get so used to going to the doctors and telling them everything. If someone (that is not your doctor) starts to poke around in your business, maybe you should remind them that it is your business. Plus it has always been fun for me to be able to walk down my hallway at school and think, “No one knows. They are the only people in my life that don’t know about my medical conditions and they treat me like a normal person.” It can give you a great confidence boost to be able to get to know people and have people get to know you, not the POTS. All of this being said, if you are going to be in a situation where you might pass out or something, a little heads up to the person you are with is always a nice thing to do.

Going back to school can be very difficult, and the anxiety can be completely crippling. But if you go everyday that you can, you will find that it gets easier and easier, until that fear finally all together goes away without you even noticing it; and in its place friends, learning and fun can become your normal.

Katie Herbert is an 18-year-old POTS/EDS/Mitochondrial Disease patient who was diagnosed at age 12. After being home-bound for three years, she returned to classes full-time for high school and will graduate in June. Katie volunteers for Dysautonomia International and will begin her freshman year at Grinnell College in the fall. 

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Dysautonomia International is pleased to announce our first two summer research internships for college and graduate level students interested in studying POTS.  A talented pool of individuals from across the US and Canada applied for the 2016 Dysautonomia International Research Internship.  After a careful deliberation, two interns were selected – Erin and Julia. Erin and Julia will get to work with one of the top experts in the field this spring and summer, Dr. Hasan Abdallah, Director of The Children’s Heart Institute.  They’ll be working on two very exciting POTS research projects – a long term follow-up study on pediatric POTS patients and study on peripheral vascular resistance in pediatric POTS patients.

In addition to conducting POTS research that is needed right now, we hope this annual research internship program will have other benefits too.  By supporting young scientists and nurturing their interest in POTS research, over the long term we hope to attract more medical professionals and scientists to focus on POTS clinical care and research throughout their careers.  Please consider making a donation to Dysautonomia International so that we can fund additional research interns in the future.

Q: Tell us a little bit about yourself
Erin: I am majoring in neuroscience and biology at Carthage College in Kenosha, Wisconsin. I am 19 years old and lived in Connecticut until I was five. I then grew up in Pewaukee, Wisconsin until I graduated from Pewaukee High School. I have a health and nutrition business and I enjoy teaching classes and sharing better health with others.

Julia: I’m from Scotch Plains, New Jersey. I’m 21 years old and graduating from the University of Miami this May. I majored in Marine Science and Biology and minored in Chemistry and Math.

Q: What motivated you to get involved with POTS research?
Erin: For the past 4.5 years, I have had first-hand experience with POTS. During this time I have attended many doctors appointments and have continuously sought out more information to improve my health. I believe that knowledge is power, and research is one form of knowledge that can have a truly powerful impact. My experiences have led me to develop my own theories as to causes or of underlying mechanisms of POTS which I plan to further research in my future. I am personally invested in and motivated to do research in relation to POTS to better understand myself, but more so to help all of us dealing with this condition or related conditions.

Julia: Because of developing POTS last Spring, I decided not to apply to graduate school until after I graduate so that I have a little more time to adjust to my new circumstances and I’m not too overwhelmed with filling out applications in addition to all of my senior year classes. I’ve always been very interested in research and experimentation and I’m planning to continue doing those things in graduate school and beyond. I’v been involved in research since my freshman year of college and I’m always curious to learn more about all aspects of biology, including mine. That’s why POTS research seemed like a really good pursuit for my gap year. 

Q: How do you balance your school and work activities with your health?
Erin: Over the past few years, I have learned the importance of health and that it really must come first to even allow anything else to be possible. With this being said, it is absolutely necessary to hold myself accountable for what I am capable of doing in terms of work and school and to continuously be pushing my boundaries and capabilities, within good reason of course. Dysautonomia has taught me how to be a better worker and student. Making working out a priority, I better myself and those I invite to join working out with me. Although sometimes exhausting, this gives me the blood flow and energy necessary to think and do well on my school work. By putting my limited energy into the things I care about and am passionate about I am able to find balance, but preparation and focusing on these aspects of life is necessary for me to achieve this balance. Additionally, I have found asking for accommodations and help when I need it is essential to success in all of these areas.

Julia: I can’t do all of the things I used to do at school so it’s been important for me to learn to conserve my energy and push myself at the same time (if that makes any sense). I’ve been able to do pretty much everything I want to do, just in moderation. With the exception of some bad days here and there, school hasn’t been as hard as I thought it would be. There isn’t much work that you can’t get done sitting down or from the comfort of your own bed or couch. 

Q: What are your plans after college?
Erin: After undergraduate schooling, I plan to go to an MD/Ph.D. program and become a medical scientist. I believe that better answers can be found more efficiently when doctors, scientists, and patients work together in a collaborative nature. Having training as both a clinical practitioner and scientist will provide me the foundation to help enhance this collaborative environment with those I work with specifically relating to causes and better treatment options for dysautonomia and other neurological conditions.

Julia: I’m planning on working on some of Dr. Abdallah’s research while also applying to grad programs; I’m applying to Ph.D. programs and hope to continue studying something in the field of microbiology, molecular biology, or evolution. I also really want to spend the next year getting back into good shape and exercising regularly again.

Q: What do you hope to get out of the Dysautonomia International Research Internship?
Erin: I am looking forward to expanding my knowledge in dysautonomia research and learning as much as I can from Dr. Abdallah. I envision learning more research techniques, enhancing my technical writing skills and hope to gain a better understanding of the autonomic system. I hope these skills will help me discover patterns and connections that can provide further understanding into this condition and inspire further questions and theories.

Julia: I’m hoping this internship will give me some good experience working on a project that directly involves people. In the past, I’ve worked with algae, sea urchins, anemones, ctenophores, and sea slugs, so this internship will definitely give me a different  perspective on how to conduct research. I also really want to understand more about POTS as it is something I live with and hope that the work we do will help others learn more about their own situations. There isn’t as much data out there on POTS and there aren’t as many research studies being done yet compared to other conditions so I’m glad I can help keep the momentum going on projects like this!

Q: If you could give one bit of advice to a newly diagnosed patient, what would you want them to know?
Erin: Life can get better if you choose life. You have to choose your best life every single day even though sometimes you may not feel the best. It is so easy to become deconditioned, which can have harsh implications, so choose better health and workout. With this in mind, every aspect of health needs to be acknowledged, so also always respect and listen to your body. There are many people working to help you, and even if they may not be directly in your life right now, they exist, but you may have to seek them out. Some things you cannot control right now, but maybe one day you will be able to or you will be able to manage it better. To become better, you must continuously choose life. Just keep looking and choosing to better yourself until you find these things. Yes, sometimes it may seem impossible but you must try. I’m not saying push yourself past what you are capable of so that you fall backwards, but I am saying you must escape your comfort zone and continuously strive to better yourself and your life. Every day holds something good, so focus on the good more than not. Enjoy the process of improvement and discovery and know that you can make a difference for the next person that comes along and needs some understanding in this regard. But remember you and your health must come first to allow for a great life to follow.

Julia: Make sure you find a good doctor that you personally get along with and trust. It is very easy for doctors with little experience in the POTS world to be dismissive or discouraging or tell you a certain treatment will make you feel better and you just end up being disappointed when it doesn’t happen. It’s totally okay to get a second or third opinion, especially if it gives you peace of mind. It can take a long time and many appointments to find a doctor that “gets it” but it will happen eventually.

Follow Dysautonomia International on Facebook and sign up for our email list to find out about next year’s Research Internship application deadline, and for updates on the research Erin and Julia are conducting with Dr. Abdallah.

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I am the parent of a POTS kid.  The purpose of this article is to give parents hope and constructive advice on how to get through this challenging period in your life.

I will first begin with where we are right now. My daughter is a senior in college, majoring in biology. She will be graduating this May with the hope of joining the medical profession. Her mission is to help other people, like herself.  Although my daughter still experiences POTS symptoms from time to time, she has learned to accept them, work with her body, and continue with her life, even when she does not feel well. (Update: Her daughter finished college, went to grad school, and became a Registered Nurse!)

Our journey began eight years ago when my daughter was diagnosed with POTS at the age of 13 after having mononucleosis. She just did not get better and by week eight, her doctor sent us to see a specialist. We were blessed to have the best pediatrician in the area and she was able to make an educated guess.

Unfortunately, she was right. Postural orthostatic tachycardia syndrome (POTS) was the name that doctors gave the illness. We had never heard of it. My daughter missed most of 8^th grade and later, part of 10^th grade. She felt so ill that it was torture for her, most days, to get out of bed. The emotional toll that it took on her and our family was tremendous as we saw our worst nightmare unfold. We saw very pessimistic specialists who really did not know how to advise us. This was a relatively new condition with no known cure, only things to help the symptoms. Nothing seemed to work and our spirits tanked.

After reading a journal article written by a Johns Hopkins cardiologist about POTS, we contacted him. A month later, we were in his office.  After examining my daughter, he was very optimistic. He said that her POTS would improve over time and that we all would get better at finding the right things to help. This was the hope that energized us and I am glad to say that he was right.

As I reflect on this tough period in all of our lives, there are things that really helped:

1. Trust what your child is telling you.
2. If it is at all possible, get counseling for your child and yourself. POTS takes an emotional toll on everyone.
3. Try and get your child into a structured PT or exercise program (dysautonomiainternational.org/exercise has some great tips).
4. Fill your refrigerator with a wide array of beverage choices and your pantry with salty snacks.
5. Collect journal articles on POTS from reputable sources and have them available for everyone who works with your child. Assume that they know nothing about this. (You can find reputable POTS journal articles and tips on school accommodations on the Dysautonomia International website.)
6. Get to know your child’s teachers, counselor, and administrators. Share the articles with them.
7. Obtain an IEP or 504 Plan from your child’s school that allows extra time on tests, modified assignments, and modified due dates.
8. Do not stress about missed school. Focus on feeling better.
9. If you or your child decide to join a support group, try to find one with people who are hopeful and encouraging towards each other.  Some of the support groups can be very negative, and this is not helpful for you or your child.
10. Sadly, you quickly learn who your real friends are. Move on from them and don’t look back.
11. Grow a thick skin. Parenting an adolescent is tough. The POTS makes it exponentially harder.
12. Never give up hope.

Hopefully, after reading this article, you will be able to better see the whole picture of what it is like having a child with POTS. It does get better and a positive attitude goes a long way.

Guest author Linda Deutsch is the parent of a 21-year-old POTS patient who was diagnosed in 2007, at age 13. Linda has experienced the ups and downs of having a teenager and young adult with POTS and has insights on what has worked for her daughter and what has not. She is dedicated to finding a cure for POTS.

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by Amy Arnold, PhD

POTS is one of the most frequent forms of chronic orthostatic intolerance, and is a common source of disability among young adults. One of the most common symptoms reported by POTS patients is cognitive dysfunction or “brain fog.” These terms both indicate a loss of brain functioning in areas such as thinking, remembering, concentrating, and reasoning to a level that interferes with daily activities. In our center (Vanderbilt University’s Autonomic Dysfunction Clinic), approximately 80 to 90% of POTS patients report cognitive dysfunction and often describe it as: “difficulty thinking, concentrating, or paying attention; trouble remembering things; cloudy or fuzzy feeling in head; and having problems finding the right words.” This can occureven while patients are lying down or seated, which limits their ability to attend school or to work. While cognitive dysfunction is an almost universal finding in POTS patients, it is still poorly understood.

In response to our patient’s concerns, we designed a study to identify specific problem areas for cognitive function in POTS. We gave a series of standardized neuropsychological tests to POTS patients and compared their responses to healthy subjects matched for age and gender. We studied patients in the seated position, to minimize heart rate changes and related symptoms. We found clinically meaningful impairment in three areas of cognitive function in POTS patients. First, patients had impaired selective attention, or the ability to focus on specific stimuli when several stimuli are presented at the same time. For example, patients were slower and made more mistakes when asked to mark only the numbers 2 and 7 within a long series of numbers. Second, patients had impaired cognitive processing speed, indicating that it took longer to process information. Finally, patients had impaired executive function, indicating problems with planning, organizing information, and adapting to changes. There were no deficits in other areas of brain function including intelligence, memory, reaction time (psychomotor speed), and information retrieval from memory (verbal fluency). Importantly, in our study, there was no association between cognitive dysfunction and psychiatric symptoms such as mild depression or anxiety in POTS patients.

In summary, our study showed that POTS patients have deficits in specific areas of cognitive function including selective attention, processing speed, and executive function. These problems were observed even in the seated position. This may indicate that the cognitive dysfunction in POTS is not due to the increased heart rate and symptoms with standing, but rather may reflect part of the disease itself. Further studies are needed to determine the impact of standing, the underlying causes, and the optimal treatment strategies to manage this cognitive dysfunction.

Is cognitive dysfunction the same as brain fog?
There are several words that have been used to describe the cognitive dysfunction in POTS including brain fog, mental fog, mental fatigue, and mental clouding. These all refer to multiple symptoms that impair intellectual functioning to a level that interferes with daily activities. These symptoms can include difficulty thinking clearly, trouble concentrating or focusing, and mental confusion or lack of mental clarity.

What are the specific tests for cognitive function?
There is not a single test or series of tests used to diagnose cognitive dysfunction. Rather, there are numerous standardized neuropsychological tests that can provide information about different aspects of cognitive function. The basic purpose of these tests is to determine the likelihood of meaningful cognitive impairment, by comparing scores to normative values obtained from healthy subjects of similar age, gender, and education level. A potential limitation is that the tests may not have been validated in every population (such as POTS), and may have lower accuracy to detect changes in patients with mild levels of cognitive dysfunction.

Who can diagnose cognitive dysfunction?
A primary care physician can perform a general screening test for cognitive function, but this may not detect the more subtle changes that we found in POTS. In general, a neuropsychological evaluation is needed to gain a comprehensive understanding of how one’s brain is functioning. This involves a visit with a clinical neuropsychologist who will perform an interview and give a series of validated tests and questionnaires that look at a variety of brain functions such as intelligence, memory, attention, executive function, language, mood, and personality traits. The information from these tests may help in assessing brain function over time or after treatment.

What type(s) of cognitive dysfunction are common in POTS?
Our study showed problems with selective attention, cognitive processing speed, and executive function in POTS patients. Other studies have also shown problems with working memory, or the ability to hold onto and to process new and already-stored information, in POTS patients that also have chronic fatigue syndrome. This impairment in working memory may reflect the additional presence of chronic fatigue syndrome, as problems with memory and concentration have been well described in this patient population. It is important to note that there was a large variability in cognitive test scores in our study, with some POTS patients having scores within the normal range for healthy subjects. Thus, the diagnosis of cognitive dysfunction, and related treatment plans, should be considered on an individual basis.

What is the (suspected) cause of cognitive dysfunction in POTS?
The cause of cognitive dysfunction in POTS is still unknown. There have been several potential causes proposed. First, there is an association between elevated norepinephrine levels and psychiatric disorders such as depression, panic disorder, and attention deficit hyperactivity disorder. Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic). We did not find an association between plasma norepinephrine levels and cognitive function in our study in POTS patients, but further studies are needed. Second, studies have shown that a reduction in brain blood flow may contribute to impaired memory in POTS patients with chronic fatigue syndrome. Finally, POTS patients often have other conditions including small fiber peripheral neuropathy, vasovagal syncope, immune system activation, pain, irritable bowel syndrome, and sleep disorders. These could all negatively impact cognitive function and overall mental health.

Is cognitive dysfunction similar to attention deficit hyperactivity disorder (ADHD)? Is using ADHD medication to combat cognitive dysfunction recommended in POTS?
In a previous study, we compared the psychiatric profile of POTS patients to adult patients with ADHD (Vidya Raj and colleagues, Journal of Neurology, Neurosurgery & Psychiatry, 2009). We showed that people with both disorders have difficulty maintaining attention, but that it is more severe in ADHD. Furthermore, POTS patients developed problems with attention later in life and did not show significant hyperactivity, which is opposite to the childhood presence and the common feature of hyperactivity with ADHD. Therefore, the pattern of cognitive dysfunction appears to be different in POTS versus ADHD. The most common treatment for ADHD is the use of stimulants (such as Adderall and Ritalin) to enhance alertness, attention, and memory. There is no information on the effectiveness of ADHD medications in POTS. To address this, we are currently conducting a study examining the effects of the stimulant drug modafinil on cognitive function in POTS patients at the Vanderbilt Autonomic Dysfunction Center. Since there is concern that stimulants could worsen heart rate control in POTS, we are also examining the effect of modafinil in combination with the beta-blocker propranolol. This is the first study addressing treatment strategies to manage cognitive dysfunction in POTS.

Guest author Amy Arnold, PhD, is a Research Instructor in the Division of Clinical Pharmacology at the Vanderbilt University School of Medicine. She is also a member of the Vanderbilt Autonomic Dysfunction Center.  Her clinical research program focuses on understanding the causes of autonomic nervous system disorders such as POTS and autonomic failure, as well as new treatment strategies for these conditions.

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Many doctors advise their dysautonomia patients to try medical compression stockings, but busy doctors often don’t have the time to explain how to get the stockings, where to get them, and how they can help. We’ve put together a quick reference guide to answer common questions dysautonomia patients have about medical compression stockings.

Symptoms They Can Help With
Medical compression stockings can help prevent or minimize dysautonomia symptoms such as lightheadedness, fainting, low blood pressure, tachycardia, fatigue, “brain fog” and muscle pain caused by blood pooling in the legs. They may also give you more endurance to tolerate longer amounts of upright activity before your dysautonomia symptoms set in. Everyone is different, so there is no guarantee they will help you, but if your doctor has recommended compression stockings, it’s definitely worth it to try them out.

Getting the Right Compression Level
Most dysautonomia experts recommend 20-30mmHg or 30-40mmHg waist-high stockings. Lower levels of compression or stockings that aren’t waist high will give you less benefit. However, it’s more important that you find something comfortable that you are willing to wear everyday, that improves your symptoms.

Knee-High vs. Thigh-High vs. Waist-High Stockings
Most dysautonomia experts recommend waist-high stockings because blood pooling in dysautonomia patients can occur in the entire lower half of the body, including thighs and the abdominal area. If you wear knee-high stockings and have blood pooling in your thigh area, you may notice a swelling at your knee, above the top of the knee-high. Same thing with the thigh-highs. Medical compression stockings are super tight and unless you are very thin, the thigh-highs will probably create a not-so-glamorous thigh bulge above the top of the stocking. Waist-high stockings will help prevent the blood pooling in your abdominal area.

If you find waist-high stockings uncomfortable, there’s no reason not to try the thigh-highs or knee-highs, but they won’t be as effective as the waist-highs. Some compression is better than none if your doctor has recommended compression stockings.

Open Toe vs. Closed Toe
Some brands of waist-high medical compression stockings come with open or closed toes. Open toes are good for summer flip flops, peep toe heels and may be more comfortable for people with sensory neuropathy in their feet. Open-toe stockings are also a little easier to get on and off. But otherwise, they are the same.

Opaque vs. Sheer
Sheer stockings may be a better option for women who require formal attire for work or when you’re headed out to a party in a fancy dress, but they tend to be scratchier than the more opaque stockings. Sheer stockings may also tear faster than the thicker opaque stockings. Opaque stockings tend to be softer and have a more cottony feel to them. Opaque stockings tend to breath better too.

Latex
Most brands are latex free, but if you have a latex allergy, be sure to ask before you buy the stockings. Sometimes latex is used in the elastic bands at the top of the stockings.

Cost and Insurance Coverage
Stockings range in price from $20 at the drug store to $150 for high-end prescription stockings. Contact your insurance company to see if they cover medical compression stockings with a prescription from your doctor. If they do, they may require you to use certain medical supply companies to order them. If not, you can get them online, but you may want to call a local medical supply store to get a proper fitting for your first pair, and anytime you lose or gain significant weight. In our experience, the cheaper drug store stockings don’t have great compression and they don’t last very long.

Getting the Right Fit
Medical grade compression stockings usually measure your ankle circumference, your calf circumference and the distance between your heel and knee. Ankle and calf measurements should be taken first thing in the morning, as your legs will swell the longer you are upright (this happens to healthy people too). Sizing differs between brands. If you can get a professional fitting done, this may help you get the most of your stockings. Some medical supply stores can do this.

Looking Good While Feeling Good
Your grandma’s compression stockings may have been hospital white or an icky shade of greyish beige. Lucky for you, compression stockings come in great colors and prints now, and even sheers that look like regular pantyhose. There are also compression leggings in fun patterns and prints. For those of you who don’t want hot pink or tie-dyed legs, there are nude, tan, brown and black options too. Some of the black stockings look like fitted running pants or leggings.

How Do You Get These Things On?
First rule of donning compression stockings – do not even think about trying to put them on when you first get out of the shower! Damp skin or lotion on your skin will make it pretty much impossible to get them on. Lotion can also damage the fibers in your stockings, so you may want to skip it when you plan to wear your stockings. Check the care instructions that came with your stockings to be sure.

Once your skin is nice and dry, you are ready to put them on. Sit on the edge of your bed and put your foot up on a chair, the wall or a dresser. Pull them on one leg at at time. Lay down if you have to while rolling them up your leg. Take a break if needed – this can be tricky when you are first getting used to them.  Putting a little bit of water on your hands can help you get some extra grip to pull the stocking up.

If you are using open-toe stockings, most stocking companies will send you a heel slipper to help you get the stockings on. It’s a piece of silky fabric or slippery paper that you can use to slide the stocking over your heels, and then pull the slipper out through the toe opening once the stockings are on.

When To Wear Them?
Compression stockings work best when you put them on the in morning, before you are up and walking around. This will help prevent blood pooling. If you wait until later in the day to put them on, after you have been sitting or standing up for a while, your blood will have already started to pool in your legs – this can make it ever harder to get the stockings on, and makes them less effective in helping with your symptoms.

You can wear them all day, but you shouldn’t sleep in them. If you have ever been so tired you fell asleep with your stockings on, you may have awakened in the middle of the night to completely numb tingling cold legs. Not fun!

Can I Wear Them In The Heat?
Some dysautonomia patients are very sensitive to the heat. Heat causes vasodilation, so wearing your stockings in the heat is probably the best time to wear them. Finding a brand with breathable comfortable fabric is the key for summer stockings. Open-toe stockings are great for the summer because you can wear flip flops or sandals, and airing out your toes can help keep your cool.

Can I Wear Them In The Pool?
Most stocking manufacturers would advise against this because the chlorine or salt water will damage the elastic fabric over time. But if you are able to keep a spare pair for “pool stockings,” they are fine to swim in. You probably don’t need the compression while swimming, because water actually compresses your legs much more than the stockings do, but some dysautonomia patients experience lightheadedness as soon as they get out of the pool. It may be that we are noticing it more because we have just enjoyed the benefit of water compression. To bad we can’t live in the pool!

Tips for Women
Wearing compression stockings everyday, especially in the summer heat, might leave some women more prone to developing yeast infections, so consider cutting a small hole in the crotch of the stockings to promote air circulation. Stay inside the ‘control top’ seam so you don’t get a big tear in the stockings. This will void any warranty your stockings may come with, so try it on an older/cheaper pair first.

Other Compression Garments
If you are not up for medical compression stockings, there are other compression garments available, like compression socks, leggings, arm compression sleeves and sports recovery compression suits. However, it’s not proven whether these garments provide enough compression to make a difference in dysautonomia symptoms. Like many dysautonomia treatments, it may take a little experimenting to figure out what
works best for you.

Share Your Experiences
Do you have fabulous funky compression stockings? We’d love to see them! Send compression stocking photos to info@dysautonomiainternational.org. Let us know where you purchased them and what compression strength they are, in case other patients would like to buy them.

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The process of choosing a college can often be difficult for even for the healthiest of potential students.  There are so many factors to take into account such as price, academics, class sizes, dorm amenities, gender ratios, and nightlife just to name a few. However, someone who is living with POTS or another form of dysautonomia needs to add a few other considerations to their list. Although no one can tell you what is best for you, here are a few perspectives from some college seniors or recent graduates who have POTS.

Proximity to Home

Jenny: There were many factors that contributed to my choice of going to the University of Maryland, a school that is about 25 minutes from where I grew up and where my parents still live. I have valued being close to my parents throughout my college experience. My freshmen year, I got a terrible case of bronchitis and felt absolutely horrible. My father drove up to bring me medicine and fill my prescriptions for me when I was unable to. Also, it meant that I did not need to find a new doctor. At the end of my sophomore year, I was in the midst of a particularly rough finals week and my mother came down and brought me a care package with ice cream and other treats. I was fortunate enough to be able to bring a family car to campus for my sophomore year which also meant I could drive home anytime I needed to. I enjoyed the luxuries of doing my laundry at home and taking food from my parent’s refrigerator. Finally, it was always nice to have in the back of my mind that support from my family was near by when I needed it. Most people worry that going to school near home is “too close” but I truly believe that it is as far as you want it to be. Unless you think your parents will show up at your door unannounced, you likely do not need to see them unless you need to or want to even if you are very close. Also, in-state tuition is nice.

Maddy: Though going to school 3,000 miles away from home is not the right choice (or even an option) for many people with POTS, it was the correct decision for me. My doctor advised me that a temperate climate would improve my health, and after experiencing increased pain during cold East Coast winters and humidity-induced headaches during the summers, college in California sounded really good. There are obvious downsides to going to school across the country when you’re chronically ill – no parents nearby to help navigate flare ups and bouts of normal person sickness, encountering heaps of germs during every six hour flight home – but being far less symptomatic overall was more than worth the distance for me. My parents did hire a nurse to periodically check in on me during my first year, but as I gained stamina that was no longer necessary. Though young people dealing with serious illnesses might initially write off attending far away colleges as implausible, it’s worth exploring all of your options. Getting away from home can sometimes be the best decision, even with POTS.

Kyla: As someone with a significant amount of wanderlust, it wasn’t my dream to stay instate for college. However, given the health ups and downs that come with POTS I knew a school 1,000 miles away wasn’t realistic, so my parents and I compromised on an instate school with a 2-hour distance, James Madison University. Four years after I chose to come to JMU, I can honestly say I am so thankful I didn’t stay closer or go farther. I have a very close family and I knew if I stayed too close I would want to be home all the time, that said if I had gone much further I couldn’t come home whenever I needed or wanted to. Both my freshmen and junior year I got septic bacterial infections that landed me in the ICU in my college town. My parents were able to get to me quickly, my mom even commuted home for work twice a week for the month I was in the hospital. Thankfully, the hospital near JMU is really good, I wouldn’t recommend going to a school this far away without having access to good medical care. Sometimes there’s a lack of communication between my doctors at home and at school, but at least I have them both! I love that I can spontaneously drive home whenever I want but that I feel totally removed from home when I’m at school.

Four Year or Two-Year Institution

Shannon: I started out at a four-year university and by the spring of my sophomore year, I had run myself into the ground with fatigue. I was forced to medically withdraw and returned home to recover and figure out what it is I really wanted out of an education.

A year or so later, I started picking up classes at the community college in my free time between shifts at work. I took classes that sounded fun: web design, art history, sociology. I learned a lot and slowly eased myself back into learning.

In my personal experience, my community college has been more open to accommodations because they are designed to accept students at different stages of life. Two year institutions typically attract a larger variety of students and therefore their staff are better versed in what different types of students need. My disability support services counselor was already familiar with POTS and I’m going to guess that it’s because I wasn’t the only POTS patient there.

Here’s why I like community colleges:

• you can live at home (or close to home) and close to your center of care
• you can save TONS of money
• you’re getting a quality education!
• you can get an Associate’s Degree and get right to work if that’s your dream and if you’re sick of the extraneous courses typically associated with four year schools.
• OR you can get an Associate’s Degree and then get accepted into most four year state schools if your grades qualify (most states have this plan)
• most schools have a variety of course offerings and you can take classes in person, online, and in different time frames (for example, 8 weeks, 12 weeks, 16 weeks)
• campuses usually aren’t as large and require less walking
• student services are used to accommodating a larger variety of students

Jenny:  By the time I was 18, although I had some difficult POTS symptoms, they were not so debilitating that I felt that I needed to live at home with my parents. That said, it did really help that my family lived close by and I think it would have been a different situation if going to college near home were not an option. That said, throughout my college experience, I have met so many people who do two years at their local community college and then transfer to the University of Maryland and that is a really great option. It is a wonderful way to save money and you end up finishing with the same degree as everyone else.

Shannon again: Online classes are another important option to consider at both types of institutions. I have a love/hate relationship with online classes.

I love that I can take all of my classes while wearing yoga pants and an old sweatshirt. I love that I cannot ever be penalized for missing class because there is no class to go to. I love that I get to choose exactly what day and time I get to take my exams.

A lot of love. But it’s not all sunshine and flowers.

I hate that I never get to meet anyone. I hate that because there’s no verbal class discussion, it requires non-stop writing. And not just stream-of-consciousness writing, but quality writing. I hate that I can never gauge my professor’s reactions to my questions because it’s all over email or discussion boards. I hate that class never gets cancelled.

If you need the help, online classes kickstart you into being a responsible student. They force you to plan your assignments because once you miss the deadline, that “submit” button may no longer exist if your professor uses Blackboard. Courses seem to move a little bit faster when you are your own teacher.

I cannot speak highly enough of them for when your flare ups are frequent and leaving the house is not an option. Having the ability to go to school when going anywhere else isn’t in the cards is a liberating feeling and I’m so grateful it exists.

But a word of advice from me to you: never, ever, EVER take an 8 week online class. It will kick your butt.

Food Allergy Accommodations

When choosing a school, it is important to understand what food allergy accommodations they have. Some institutions don’t really have much in place to help students who cannot eat certain foods while other schools have completely separate cooking areas, chefs and options for people with dietary restrictions. This is something that is very important to research before choosing a school. 

Jenny: At the University of Maryland, their dining halls have different stations where you can pick up different types of foods to eat from pizza to hamburgers to sandwiches to ice cream and much more. They have a salad bar with a lot of different options. Although they have a lot of food options, they do not have any good programs in place to directly help people with food allergies. If someone has mild food allergies where it does not matter if an allergen touches something they eat, it should not be a problem. However, for people with severe food allergies, this type of school really cannot accommodate them. They have a refrigerator in the back that has gluten free bread and they do offer soymilk but all the grills have had bread and dairy on them at some point.

Kyla: One thing I was really worried about was being able to find food on campus for my very inconvenient diet. I am lactose, gluten, and meat free, which can make things difficult. I am happy to say that finding a variety of food options has been no problem. My school has gluten free and vegetarian sections in both dining halls and plenty of options, including gluten free bread, at all other dining facilities. Trust me, the freshman 15 happened to me along with all the other freshmen with unrestricted diets.

On-campus or Off-campus Housing

Jenny: I chose to live in an off campus apartment for my freshmen year of college for several reasons. It turned out to be a blessing. It was really nice to be able to cook for myself instead of have to rely on the on-campus food, which is of lower quality and has limited options for people with food allergies. Although being able to cook whatever I wanted was nice, it was also a little bit cumbersome. People who lived on campus did not have to worry about running out of food or household products or knowing when was the next time they could get to the grocery store was. They simply had to stroll into the dining hall and pick up something. I definitely struggled at first because it is a tough transition to go from parents taking care of household essentials like toilet paper and dish soap to having a account for that stuff on your own. That said, I think it forced me to grow up and learn how to be an adult much sooner than a lot of my peers. My cooking has definitely evolved since my freshmen year where I would eat a diet of peanut butter and jelly sandwiches, canned chicken noodle soup and salad straight from the bag. Another positive thing that I enjoyed about living in apartment was that I was able to have my own room.   A lot of roommate problems stems from different preferences as to sleep time, overnight guests, amount of mess and a many other factors. It was nice not having to deal with someone who went to bed really early or late or who kept the room a mess. It is especially nice with people with sleep problems because you do not have to worry about disturbing someone when you are awake in your room. It was nice to still have roommates but have the privacy at the same time. One thing to keep in mind would be the proximity to campus. My apartment was just outside the gates of my school so it was very easy to get to class. Even more importantly there was a bus that came to the front of my apartment building every 10 minutes that stopped at different places throughout campus. This ensured that getting to class was never a problem.

Kyla: All freshmen at JMU are required to live on campus, but I was able to request a more accessible dorm room, for me this meant no stairs and proximity to the bathroom. I could have applied for a single room but there was no guarantee that I would get one so I decided to look for a roommate like everyone else. Explaining my myriad health issues to my freshman roommate was kind of awkward, but I got lucky that she happened to be a nursing major and thought my chest port was cool. My insomnia, however, was more of an issue. I have an almost nocturnal sleep schedule, awake most the night and asleep during the day, which is not an entirely realistic lifestyle when you share a room. We were able to solve our issues by talking them out and compromising, a reading light instead of the room light at night for headphones and me during my naptime for her. I definitely got lucky with my choice of roommate, she and I ended up lived together for all 4 years of college and she’s now my best friend. Being honest upfront about being sick was crucial to finding the right person to room with. As for living on campus, I loved it. My building was in the center of campus so class and, more importantly, food was a short walk away. If I was too sick to get out of bed my roommate, a friend, an RA, or someone from the Office of Disability Services could always pick food or assignments up for me. When I was bedridden, girls from my hall came to keep me company and my room ended up being the one that everyone hung out in. These are friends I still have today; I have such a unique relationship with them because they are the only people besides my family that have lived with my illness.

Thanks to our guest authors. These impressive young ladies are using their talents to raise awareness about dysautonomia, and change things for the better for future patients.  Bravo!

Jenny is a 21-year-old senior at the University of Maryland, College Park. She was diagnosed with POTS at the age of 13 and has been working to manage her symptoms since. She is majoring in Biology and wants to pursue a career in physical therapy.  She’s a member of Dysautonomia International’s Patient Advisory Board.

Kyla is a 21-year-old senior at James Madison University in Virginia. She was diagnosed with POTS, EDS and MCAD over the course of the past five years. She is double majoring in biology and anthropology and hopes to pursue a career in medicine. Kyla volunteers as a member of the Dysautonomia International Patient Advisory Board.

Shannon is a 23-year-old from Leesburg, Virginia. She is a part-time student pursuing a degree in digital marketing and a full time student in pursuit of a cure for POTS.  She serves on Dysautonomia International’s Patient Advisory Board and is our in-house graphics guru.

Maddy is a 23-year-old disability activist based in the San Francisco Bay Area. She is the Systems Change Advocate at the Marin Center for Independent Living and the Youth Caucus Chair of the National Council on Independent Living. She also serves on the Scripps College Board of Trustees. She graduated summa cum laude and Phi Beta Kappa from Scripps College, where she majored in American Studies.

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by Dr. Svetlana Blitshteyn

Since POTS affects predominantly women of reproductive age, it is not surprising that at some point after the diagnosis of POTS, questions about the safety of pregnancy will be raised. As a POTS specialist, I am often asked these questions by women in their 20s, 30s and sometimes 40s. When women and their partners are ready for family planning, a chronic illness like POTS can make simple decisions difficult and difficult decisions even more challenging.

The good news is that POTS does not need to steal your dream of becoming a mother as many women with POTS have had successful pregnancies. Still, the course of POTS during pregnancy appears to be variable – i.e. 60-70% of patients will experience improved symptoms of POTS during pregnancy, while 30-40% will feel worse (1,2). Thus, women who are diagnosed with POTS and wish to become pregnant will need to educate themselves, and probably their obstetrician, regarding the course of POTS during and after pregnancy and possible complications that may arise along the way.

Typically, I advise women with POTS who want children to get pregnant sooner rather than later. This is because when you add advanced maternal age (defined as 35 years and older), to the pre-existing medical condition, the odds of developing various pregnancy and fetal complications become higher than if pregnancy occurs at a younger age.

There may be a possibly higher miscarriage rate in women with POTS, which may make it more difficult and/or take longer to conceive. Additionally, a study from Vanderbilt University suggested that there may be a higher rate of gynecological disorders in women with POTS, such as endometriosis and uterine fibroids (3). Thus, for women with POTS who wish to get pregnant, several issues may arise that would require a careful and comprehensive approach on the part of the POTS specialist, gynecologist and the patient, in making pregnancy a priority. Below are the answers to common questions raised by POTS patients regarding pregnancy.

1. Is pregnancy safe for POTS patients?

Generally, there are no contraindications to pregnancy in patients with POTS. However, since POTS is a disorder that has many underlying causes, many of which are still unknown, every patient with a diagnosis of POTS will need to ask that question to their POTS specialist. If you have mild symptoms or your POTS is fairly well-controlled, the decision of whether it is safe to undertake pregnancy will be easier to make. However, even for women with severe POTS who want to become pregnant, pregnancy is still not contraindicated, although it may require multiple specialists, various interventions and careful planning for labor, delivery and the postpartum period.

2. Are there pregnancy complications that are more likely to occur in POTS patients?

In my study on POTS and pregnancy, almost 60% of women reported severe vomiting or hyperemesis gravidarum (extreme and persistent vomiting during pregnancy) and 40% of women experienced fatigue during pregnancy (1). Other common POTS symptoms during pregnancy were presyncope and tachycardia. Also noteworthy is that there was a higher rate of miscarriage in patients with POTS compared to the general population. The good news is that there were no maternal or fetal complications attributable to POTS, as far as we know. However, a number of questions still remain and need to be studied further. These questions include whether there is an increased risk of pre-eclampsia, pregnancy-induced hypertension or postpartum hypertension in women with POTS; whether a subsequent pregnancy results in worse symptomatic exacerbation than the first pregnancy, and what the course and outcomes are in women with postpartum onset of POTS who become pregnant again.

3. Does pregnancy make POTS symptoms worse or trigger a relapse after delivery?

In our study, about 50% of women with pre-existing POTS felt better or stable 6 months postpartum, compared to before pregnancy (1). In a study by Dr. Blair Grubb, about 30% of women felt worse after giving birth (with the postpartum period not defined), while 70% of women reported “stable” symptoms (2). In the study by Mayo Clinic, there were no differences in the autonomic function tests scores in women with POTS who had children compared to women with POTS who did not (4). In conclusion, about 30-50% of women with pre-existing POTS reported worsening of symptoms after giving birth. Furthermore, for a number of healthy women, pregnancy can trigger a new-onset POTS, and for substantial proportion of women with pre-existing POTS, pregnancy will be an exacerbating factor. Conversely, about half of women with POTS can expect no change in their symptoms after the pregnancy.

4. What POTS medications are safe to take during pregnancy?

While there are no pregnancy “Class A” medications (i.e., the FDA classification for the safest drugs for pregnant women) available to treat POTS, in our study women who used medications, if necessary, to control symptoms, did not have any adverse maternal or fetal effects. I have used a low dose of a beta blocker to control tachycardia and other symptoms in pregnant patients with POTS safely. Florinef and Mestinon can also be continued during pregnancy if necessary, but we have less experience with midodrine during pregnancy since it’s a newer medication. There is also an option to continue or switch to Prozac in those women who take SSRIs before pregnancy. Medications that need to be weaned off or used only under special circumstances and/or sparingly are benzodiazepines, like clonazepam, Ativan and Xanax, and stimulants, such as Ritalin and Adderall.

5. What POTS medications must be stopped before pregnancy and for how long?

Ideally, all medications would have to be stopped prior to conception. However, for many women with POTS and other chronic illnesses, this would be an unrealistic goal. If at all possible, medications during the 1st trimester when the fetus is developing, should be avoided. If this is not possible, as will be the case in many patients, the lowest dose of the medication should be used. I recommend weaning off benzodiazepines and stimulants such as Ritalin and Adderall slowly, under the supervision of your physician, before planning to conceive. If pregnancy is unplanned, there may be a faster weaning schedule to discontinue controlled substances. It might be beneficial to consult a high risk obstetrician, a.k.a maternal-fetal medicine specialist, before you plan to become pregnant with a chronic illness, in addition to your POTS specialist.

6. Does having POTS pose any risks for the baby in utero and postpartum?

All four studies on POTS and pregnancy conclude that there appears to be no negative effects on the fetus or the child secondary to the maternal POTS (1,2,4,5), and this is a reassuring conclusion. I am often asked if fainting can harm the baby, and the answer is no, a simple isolated faint will typically not harm the fetus because the fetus is protected by the surrounding amniotic fluid. However, if syncope during pregnancy becomes frequent and persistent, this may affect placental blood flow to the baby and will likely require an intervention from your doctor to effectively manage recurrent syncope.

7. Do any of the common POTS medications pass through to breast milk?

It is well-established that breast milk is superior to any formula for the baby. Yes, a small percentage of the medication will be excreted in the breast milk, but more likely than not, it would not affect the newborn. Some beta blockers are noted to be safer in breastfeeding than others. For example, metoprolol is considered safer than atenolol because atenolol has a longer half-life. Additionally, Prozac, which is acceptable during pregnancy, may be more harmful to the newborn through breastfeeding than Zoloft. Once again, the lowest dose of the medication with the least potential for the adverse effects for the baby would be utilized. Your pediatrician and pharmacist would be the best specialists to answer questions regarding specific medications and breastfeeding.

It is also important to mention that some women may be unable to breastfeed at all for various reasons. The medical community and our society strongly emphasize the benefits of breastfeeding and breast milk, which may lead to feelings of anxiety, depression, guilt and low self-esteem in those women who are unable to breastfeed their baby. I want to reassure those women that your baby will also thrive with bottle-feeding and formula. It would be more important for both the mother and the baby to be healthy and thriving, regardless of the mode and type of feeding.

8. Will my child develop POTS?

POTS is not a genetic disorder in the sense that it does not follow the type of genetic transmission that occurs in cystic fibrosis, for example. Although research in the genetics of POTS is currently lacking, it has been shown in various studies that POTS may run in families (13% to 40% of patients) (1). While POTS is not transmissible to children through one particular gene, it is possible that children may be predisposed to autonomic dysfunction as adolescents or adults through their overall genetic makeup. However, at this time, it is impossible to predict or calculate the likelihood of a child developing POTS if one parent is affected.

In summary, while POTS, like many chronic illnesses, is a concern to women who wish to become pregnant, the research studies available to date are reassuring that women with POTS may safely undertake pregnancy if they choose to do so. While there may be additional risks and complications, such as a possible increase in miscarriage rate and hyperemesis gravidarum, overall there appears to be no adverse maternal or fetal complications attributable to POTS. Nevertheless, there will be a significant number of women (about 50%), whose symptoms of POTS will become worse after pregnancy, and to this end, having a good support system and help with childcare are essential to the well-being of the mother, the baby and other family members.

References
1. Blitshteyn S, Bett GL, Poya H. Pregnancy in Postural Tachycardia Syndrome: clinical course and maternal and fetal outcomes. J Matern Fetal Neonatal Med. 2012; 25: 1631-1634.
2. Kanjwal KK, Karabin B, Grubb BP. Outcomes of pregnancy in patients with Postural Orthostatic Tachycardia Syndrome. PACE 2009; 32:1000-1003.
3. Peggs, KJ, Nguen H, Enayat D, et al., Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome. Int J Gynaecol Obstet. 2012; 118: 242-246.
4. Kimpinski K, Iodice V, Sandroni P, Low PA. Effect of pregnancy on Postural Tachycardia Syndrome. Mayo Clin Proc 2010; 85: 639-644.
5. Powless CA, Harms RW, Watson WJ. Postural tachycardia syndrome complicating pregnancy. J Matern Fetal Neonatal Med 2010; 23: 850-853.

Guest author Svetlana Blitshteyn, MD is the Director of the Dysautonomia Clinic and a Clinical Assistant Professor of Neurology at the University at Buffalo School of Medicine and Biomedical Sciences.  She also serves as a volunteer on Dysautonomia International’s Medical Advisory Board.

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