When Jenna Rose started experiencing frequent fainting episodes and other unusual symptoms, she put high school on pause and came to Mayo Clinic seeking answers. Nine years later, Jenna joined Mayo Clinic to help patients like her get on the path to healing.  

Jan. 6, 2015, started like any other day for Jenna Rose, but it ended as anything but ordinary.

A high-school junior at the time, Jenna was in the middle of art class when she fainted suddenly and unexpectedly. The following day, it happened again.

"I continued to have dizziness and syncope, and over the course of the next few weeks, I became extremely fatigued and experienced weakness, headaches, pain and nausea, which made walking, eating and sleeping unpredictable," Jenna says. "I started using a walker and wheelchair."

Less than two months later, she had to drop out of high school.

After she fainted the second time, Jenna's mom — a Mayo nurse — brought her to Mayo Clinic in Arizona, where doctors found an answer for her sudden symptoms — postural orthostatic tachycardia syndrome, or POTS. The experience put her on a path back to health and inspired a career course that brought her back to the same neurology floor where she was diagnosed.

A teenager with a complex condition: Jenna's POTS diagnosis

At Mayo Clinic, Jenna's primary care physician, Amy Rampley, M.D., conducted an examination and noted significant changes in Jenna's heart rate with positional changes. She then ran labs to check for mononucleosis and other common diagnoses.

Once those were ruled out, Jenna was referred to electrophysiologist Luis Scott, M.D., who did various tests to ensure Jenna's heart and lungs were healthy. Those tests all came back normal.   

Next, Jenna saw neurologist Brent Goodman, M.D., now retired, who made her diagnosis. Jenna had developed postural orthostatic tachycardia syndrome — POTS for short — a condition in which the nerves that regulate blood flow are out of balance, so not enough blood goes to the right place at the right time, causing a variety of symptoms like the ones Jenna experienced.

Jenna's care plan focused on symptom management and involved plenty of trial and error.

Trial-and-error approach yields positive results

"By the time I received my POTS diagnosis in the spring of 2015, I had lost a concerning amount of weight and was continuing to decline," Jenna says.

Jenna began therapy and slowly started to put her weight back on.  

In 2017, Jenna completed a three-week pain rehabilitation program and built friendships with others in the chronic illness community.  

In the years that followed, she began biweekly subcutaneous home infusions, which she continues today. She visited Psychology, Psychiatry, Sleep Medicine, Aerospace Medicine and Pharmacogenomics.

She also did a three-month POTS-centered exercise study led by Courtney Wheatley-Guy, Ph.D. It was around that time that she started making strides toward independent mobility.

My care team was and is everything to me. Dr. Goodman treated me with respect and compassion, always.

Jenna Rose

As Jenna recalls how far she has come through the years, she credits her progress to her expert care team, including her doctors, lab technicians, therapists and nurses, and their willingness to try various approaches until they found what worked for her.

"While recovery is a long and winding road, Mayo has helped me progress in many ways," Jenna says.

"My care team was and is everything to me," Jenna says. "Dr. Goodman treated me with respect and compassion, always. His transparency about both the severity of my health and the limitations of medicine was the most helpful and dignified support I ever received — even and especially when I was a teenager."

Finishing school and returning to the activities she loves

A year after dropping out of high school, Jenna returned and earned her high school diploma. After graduation, Jenna attended Paradise Valley Community College and Arizona State University, where she got a bachelor's degree in speech and hearing sciences.

Last year, she went skiing for the first time since she became ill and attended her first concert without a walker. She also started boxing and got back into making art and magazine collages.  

"I am slowly building my life back up into something I am both comfortable with and excited to experience," Jenna says.

Of all the things Jenna has accomplished since her diagnosis, there is one that makes her most proud: Landing a full-time job at Mayo Clinic, on the floor where she received her diagnosis.

Jenna's full circle moment: Working where she was diagnosed

Jenna knew she needed to land a full-time job before she turned 26 to maintain health coverage, so she chose to bring her talents to Mayo Clinic in Arizona.

In 2023, Jenna landed a full-time job as a desk operations specialist on the neurology floor.

"Working on the floor where I was diagnosed and have spent so much time is the most meaningful work I have ever done. I have gone through a lot of the testing and appointments that I am now helping to schedule for others," Jenna says.

"My journey at Mayo did not start by choice," she says, "but it continues very intentionally."

The post POTS patient now working where she was diagnosed appeared first on Mayo Clinic News Network.

Listen: POTS syndrome (Postural Orthostatic Tachycardia Syndrome)

The post Mayo Clinic Radio on Neurosciences: Postural Orthostatic Tachycardia Syndrome (POTS) appeared first on Mayo Clinic News Network.

ANSWER: A diagnosis of postural tachycardia syndrome, commonly known as POTS, typically is based on symptoms, along with the results of an assessment called a tilt table test. Although there’s no cure for postural tachycardia syndrome, often it can be managed effectively with lifestyle changes and medication. And fortunately, teenagers — the group most often affected by POTS — usually outgrow the disorder by the time they reach their 20s.

Postural tachycardia syndrome affects the autonomic nervous system, which controls involuntary body functions such as heart rate and blood pressure. In postural tachycardia syndrome, the nerves that regulate blood flow are out of balance, so enough blood doesn’t go to the right place at the right time. The result is a variety of symptoms, including an overly rapid heartbeat when shifting from lying down to standing up.

A person’s heart rate is usually about 70 to 80 beats per minute when resting. Normally, the heart rate increases by 10 to 15 beats per minute when standing up, and then it settles down again. For people with postural tachycardia syndrome, the heart rate goes up considerably higher when they stand, often increasing 30 to 50 beats per minute or more. This can lead to lightheadedness, dizziness and fainting.

Other postural tachycardia syndrome symptoms may include chronic fatigue; headaches or other types of chronic pain; and digestive problems, such as nausea and cramping. These symptoms may vary considerably from one person to another. If symptoms seem to be pointing to postural tachycardia syndrome, the diagnosis usually is confirmed using a tilt table test.

For a tilt table test, you begin by lying flat on a table. Straps are put around your body to hold you in place. After about 30 minutes of lying flat, the table is quickly tilted to raise your body to a head-up position — simulating a change in position from lying down to standing up. Then, your heart rate and blood pressure are monitored for about 10 minutes. In people who have postural tachycardia syndrome, the heart rate goes up by more than 30 beats per minute when tilted up (40 beats per minute or more for teenagers). Blood pressure remains steady or changes only slightly.

Postural tachycardia syndrome begins in the teenage or early adulthood years. Although postural tachycardia syndrome is a chronic condition, about 80 percent of patients grow out of it. Until that happens, treatment can ease postural tachycardia syndrome symptoms.

In people who have postural tachycardia syndrome, the blood vessels are too relaxed. Extra fluid is needed to fill up the vessels, allowing blood to flow properly. Drinking extra fluids alone isn’t enough. Increased salt intake is also necessary to hold fluid in the blood vessels. It’s also important for people with postural tachycardia syndrome to avoid caffeine and alcohol.

Exercise is critical. Engaging in daily, moderate, aerobic exercise — biking, rowing or swimming, for example — not only improves fitness and increases energy levels, but also works to retrain the autonomic nervous system to regulate blood flow correctly. Wearing garments that mildly compress the thighs and abdomen also can encourage proper blood flow and reduce postural tachycardia syndrome symptoms.

A variety of medications are available to treat postural tachycardia syndrome. But they are generally not effective if the strategies of fluid, salt, compression and exercise are not also in place.

Because postural tachycardia syndrome is a complicated disorder that can show up in a variety of ways, those with postural tachycardia syndrome may need to use several different treatment options. At times, it can be challenging to find a treatment regime that successfully controls all postural tachycardia syndrome symptoms. If you don’t respond well to initial treatment, it’s important to continue medical care and work with a provider familiar with postural tachycardia syndrome who can customize care to your individual needs. — Dr. Jeremy Cutsforth-Gregory, Neurology, Mayo Clinic, Rochester, Minnesota

The post Mayo Clinic Q and A: All about POTS — postural tachycardia syndrome appeared first on Mayo Clinic News Network.

Here's the Mayo Clinic Radio podcast.

The post Treatment options for kidney stones: Mayo Clinic Radio appeared first on Mayo Clinic News Network.

Kidney stones are small, hard mineral deposits that form inside your kidneys. If you've had them, you know that passing kidney stones can be painful. Depending on your situation, you may need nothing more than to take pain medication and drink lots of water to pass a kidney stone. In other instances, when the stones cause complications, more extensive treatment may be required. On the next Mayo Clinic Radio program, urologist Dr. David E. Patterson will cover treatment and prevention of kidney stones. Also on the program, colorectal surgeon Dr. Robert Cima will explain enhanced recovery after surgery — a technique that helps patients return home more quickly after an operation. And neurologist Dr. Jeremy Cutsforth-Gregory will discuss the difficult-to-diagnose disease of postural orthostatic tachychardia syndrome, commonly known as POTS.

The post Mayo Clinic Radio: Treatment options for kidney stones appeared first on Mayo Clinic News Network.

Listen to the program on Saturday, Jan. 14, at 9:05 a.m. CST.

Miss the show?  Here's the Mayo Clinic Radio podcast.

Follow #MayoClinicRadio, and tweet your questions.

Mayo Clinic Radio is on iHeartRadio.

Mayo Clinic Radio produces a weekly one-hour radio program highlighting health and medical information from Mayo Clinic.

Access archived shows.

The post Mayo Clinic Radio: Kidney stones / enhanced recovery after surgery / postural orthostatic tachycardia syndrome appeared first on Mayo Clinic News Network.

Reilly had been a healthy college student majoring in business at Northern Illinois University in the fall of 2011. But by the end of the school year, the Plainfield, Illinois, resident had dropped out, debilitated by her mysterious symptoms. Reilly spent the summer of 2012 visiting doctors.

When no one could decipher her symptoms, she decided to try another approach. Reilly went to a chiropractor, who asked to see her MRI images. After looking at them, the chiropractor urged Reilly to get an enzyme-linked immunosorbent assay test, confirmed by a Western blot test, to check for Lyme disease. Reilly did so, and on her 19th birthday, she received the news that the test results were positive.

Reilly had a standard 60-day course of antibiotics to treat Lyme disease in the fall and winter of 2012, but her symptoms never really went away. Her hometown doctor, having exhausted all of his resources to cure her, suggested she visit Mayo Clinic.

Starting from scratch

Reilly’s initial encounter with Mayo Clinic included appointments in the departments of Neurology, Rheumatology, Dermatology and Primary Care at Mayo's Rochester campus. Among the possible conditions investigated were lupus and multiple sclerosis.

“They were aware that I had Lyme disease, and they were trying to figure out if it was completely gone, or whether I had something else going on, and what exactly it was,” Reilly says. She also had developed psoriasis during her struggle with Lyme disease.

The sudden onset of new skin symptoms, coupled with widespread pain and fatigue, made it appear that she could have developed an autoimmune disorder, separate from the Lyme disease.

“I stayed at Mayo for the whole summer,” she says. "I was in and out of appointments for about three months.”

“At Mayo, I always felt the doctors were there for me, and they were going to go figure out what was wrong with me. The whole level of professionalism is great.” — Reilly Steidle

During her visits, Reilly was impressed with the thoroughness of her care team’s investigation as its members worked to uncover the source of her maladies.

“I always felt the doctors were there for me, and they were going to figure out what was wrong with me,” she says. “The whole level of professionalism is great. You really do feel that sense that everyone there is really trying to listen to you, and everyone is genuine.”

Reilly’s blood tests showed elevated levels of C-reactive protein, which is an indicator of inflammation, as well as high levels of copper and the protein that carries copper.

“High copper can cause chronic inflammation that mimics the neurological symptoms of Lyme,” Reilly says. “That was really important, because it was treatable, and no one had actually thought of that before.”

Based on her physicians’ recommendations, Reilly took steps to lower her copper level. At a follow-up six months later, not only was her copper level back to normal, but Reilly’s neurological symptoms — ranging from problems with balance to temperature regulation and a facial tic — had disappeared.

Answers at long last

Reilly’s care team also wanted to root out the source of another problematic symptom — falling and staying asleep. Mayo Clinic sleep specialist Maja Tippmann-Peikert, M.D., recommended a sleep study in the Center for Sleep Medicine.

Rather than showing that Reilly struggled to fall asleep, the test revealed the opposite. She went into the rapid eye movement, or REM, stage of sleep immediately after dozing off. A second test, a multiple sleep latency test, was performed to see if Reilly had narcolepsy — a chronic sleep disorder that causes overwhelming daytime drowsiness and sudden attacks of sleep.

“During the test, I was asked to fall asleep for 15 minutes every two hours, and then after I slept, I had to journal,” Reilly says. “And in every journal, when I said I wasn’t sleeping, when I went in to see the test result, it showed that when I thought I wasn’t sleeping, I was actually dreaming.”

Reilly admits that for years, people in her life had told her she would fall asleep during the day. She grew defensive and denied it, claiming she was just tired from working too hard. Although she cannot pinpoint when her narcolepsy began, Reilly says that it was during her struggle with Lyme disease in early 2012 that her sleep problems started to have a noticeable effect on her daily activities.

In addition to neurological diagnoses, Reilly’s doctors at Mayo Clinic also confirmed she had fibromyalgia, a disorder characterized by widespread musculoskeletal pain, fatigue, and sleep and mood issues.

“A lot of people have invisible diseases, and I think it’s very important to empathize with those people,” she says. “With my friends and family, they knew me before I was sick, and it’s hard for them to interpret why this girl, who could previously do the farm chores, now takes a shower and she’s tired. The experience really changed the way I view life and conduct myself.”

Adaptation and inspiration

To better understand and manage her fibromyalgia, Reilly attended Mayo Clinic’s fibromyalgia clinic. While she was there, she made yet another discovery about her health. She had POTS, or postural orthostatic tachycardia syndrome.

“I went to the fibromyalgia clinic to better my lifestyle, and I actually learned something about myself, too,” she says.

Not only has Reilly endeavored to change her lifestyle to accommodate her limitations, she also decided to switch gears academically.

“I came back to school after Lyme, and decided I needed to be the best,” she says. "I was on a totally different career path before I got sick. Because of the challenges I faced before I came to Mayo and my Mayo experience, I was inspired to change my career path to help people who have chronic pain or these symptoms.”

“I was torn up about my diagnoses for a while. But I decided the only thing you can do is take the challenges you were given in life and make those same challenges easier for other people.” — Reilly Steidle

Reilly switched her major to medical lab science and began to seek out new opportunities, including a summer internship in the components lab of Mayo Clinic’s Division of Transfusion Medicine. During her internship, Reilly internalized Mayo’s philosophy of always putting the patient first.

“It was humbling and awesome to be in a place where they were doing things right and how I would want them to be done,” she says.

Since then, Reilly has assumed a number of leadership roles. She was elected chair of the American Society for Clinical Laboratory Science, Illinois Student Forum. She’s published articles about Lyme disease, and she seizes opportunities to educate herself about disease states, so she can better serve the community after graduation.

As she finishes college, Reilly continues to look for additional ways to contribute, participating in patient safety committees, and organizing events that raise awareness of medical conditions and inspire other young professionals to get involved.

“I was torn up about my diagnoses for a while,” Reilly says. “But I decided the only thing you can do is take the challenges you were given in life and make those same challenges easier for other people.

HELPFUL LINKS:

• Explore Mayo Clinic’s Department of Neurology.
• Read more about Lyme disease.
• Check out Mayo Clinic’s Center for Sleep Medicine in Minnesota.
• Connect with others who have multiple and complex diagnoses on Mayo Clinic Connect.
• Schedule an appointment.

The post Sharing Mayo Clinic: Complex diagnosis reshapes student’s future appeared first on Mayo Clinic News Network.

For people with postural orthostatic tachycardia syndrome (POTS), everyday tasks can be daunting. Symptoms such as fatigue, dizziness and stomach problems greatly impact quality of life. Patients with POTS may look healthy, but they say they feel terrible, making it hard for other people to understand. POTS falls under the category of disease called dysautonomia, and October is Dysautonomia Awareness Month.

In this Mayo Clinic Minute, reporter Vivien Williams talks to Dr. Jeremy Cutsforth-Gregory about POTS. He explains how one simple test can diagnose the condition and how treatment can improve symptoms.

Watch: The Mayo Clinic Minute

Journalists: Broadcast-quality video pkg (1:00) is in the downloads. Read the script.

Related posts:

Living with POTS, Oct. 24, 2016

The post Mayo Clinic Minute: What is POTS? appeared first on Mayo Clinic News Network.

Christine Esposito has suffered with POTS for many years. Her symptoms include dizziness, extreme fatigue, stomach problems and more. When a medical team at Mayo Clinic led by Dr. Jeremy Cutsforth-Gregory diagnosed her symptoms as POTS, the news came as a relief. She wasn't just too lazy to get out of bed and head to school. There was a real condition preventing her from doing so. For the Mayo Clinic News Network, reporter Vivien Williams shares Christine's story.

Watch: Living with POTS.

Journalists: Broadcast-quality video pkg (3:19) is in the downloads. Read the script. 

POTS and other malfunctions of the autonomic nervous system are grouped under the umbrella term, dysautonomia. October is Dysautonomia Awareness Month, and experts hope to educate people about these conditions.

For more information about POTS, visit the Dysautonomia International website.

The post Living with POTS appeared first on Mayo Clinic News Network.

Journalists: The video package and extra b-roll are available in the downloads. To read the full script click here.

This is a special report produced for the Mayo Clinic 150th Anniversary Collection of Stories. To view other stories and learn about Mayo Clinic's sesquicentennial, please click here. 

The post Treating POTS: A Teenage Syndrome Solution appeared first on Mayo Clinic News Network.