Your Teenager: Depressed, Anxious... or This?

My oldest daughter is a high school senior, attends school events, cheers her younger sister at volleyball games, works hard on her homework, spends time on Facebook, loves "Modern Family," deals reasonably well with the normal stress she has in her life given the school workload, college essays, social commitments and so on. In other words, Sarah is a typical teenaged girl.

That wasn't always true.

In the middle of 10th grade, when she was 15, she started to complain about being tired. "I'm exhausted," she would tell me. I put it down to too much schoolwork, not enough sleep and typical teenage angst. I made sure she went to bed early, took a multivitamin and ate better... but the exhaustion persisted.

During the Christmas vacation we went to spend some time with my mother, who lives in Virginia. It was Christmas Eve, and I was preparing our holiday dinner. My younger daughter burst into the kitchen screaming, "Sarah's not breathing!" My husband and I ran to the bedroom to find Sarah sprawled on the floor, face and lips white. It looked as though all blood had drained from her face. Her eyes were slightly open but she wasn't seeing or hearing. While my husband tended to Sarah, I called for an ambulance.

At the hospital, they checked everything and reported that her blood pressure was low, while her pulse was high. Not knowing what else it could be, the ER doctors thought perhaps she might be dehydrated and proceeded to give her an IV. Hours later, as Christmas morning was breaking, I took Sarah back to my mother's house, completely unnerved. We reviewed every possibility: Something she ate? Not enough sleep? Stressed about something? Coming down with a virus? Nothing really seemed to fit or make sense.

A few days later back in New York City, I took Sarah to her pediatrician, who examined her and said, "It was probably just one of those teenage things. Maybe a little too much stress, not enough sleep. Nothing to worry about."

Shortly after the Christmas holiday, I woke her for school, but Sarah couldn't get up. I tried to persuade and cajole, remembering what one doctor told me years ago: "Don't let them stay home if there are no broken bones, no blood and no fever." But she just looked at me and said, "I can't." I called the pediatrician.

When Sarah tried to get up a little while later to go with me to the doctor, she fainted on the floor.

From that day in early January until early April, Sarah's life became a blur of visits to cardiologists, infectious disease specialists, rheumatologists and neurologists coupled with bouts of fainting spells that occurred often and without warning. She was tested for celiac disease, the flu, rheumatoid arthritis, lupus, heart disease, mononucleosis, bacterial infections, viral infections and brain tumors. She went to school with wires connected to her head, to her heart, and even had a spinal tap. I can't tell you how many times she was asked, much to her discomfort, "Could you be pregnant?"

While Sarah's school was incredibly supportive during this time, the fact was she often missed classes, or left early because she felt so sick. While she was in school, she found it hard to concentrate, and her grades suffered. She had no energy for friends or school activities. I worried constantly that on top of everything else she was going through physically -- whatever that was -- she was at risk for depression. Sarah confided that she was starting to feel as though she would never feel well again.

Eventually, her pediatrician suggested that perhaps Sarah was suffering from anxiety and depression, and that it might be time to visit a psychiatrist. "After all", she told me, "we have not been able to find any physical reason for Sarah's problems, so they must be psychological." I started searching for a new pediatrician.

I put a call into a doctor I was hoping could shed light on this: Dr. Karen Hendricks-Munoz, head of the Neonatal Intensive Care Unit (NICU) at New York University Langone Medical Center, where Sarah had been born and stayed for almost three months. Sarah was a preemie, born at 27 weeks and weighing 2 lbs., 2 oz. Thinking this might be connected somehow to Sarah's prematurity, I explained everything to Dr. Hendricks-Munoz. She immediately knew whom I had to take Sarah to see: Dr. Julian Stewart, who was doing extensive research on POTS (postural orthostatic tachycardia syndrome) in adolescents, and Dr. Hendricks-Munoz believed Sarah's symptoms closely matched those associated with POTS.

According to the National Institute of Neurological Disorders and Stroke, POTS is defined as:

A condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.

Sarah was seen by Dr. Stewart within a few days, and after he gave her the "tilt table test" (the gold standard test for a diagnosis) it was clear she had POTS.

In a recent New York Times article, which focuses on a teenaged boy who had the same experience as Sarah, Dr. Stewart said,

"These people can't remain upright," said Dr. Julian M. Stewart, who studies the disorder at Westchester Medical Center and New York Medical College. "They can experience a 20 percent to 30 percent drop in cerebral blood flow when they try to stand up. This causes cognitive difficulties; they can't think well on their feet."

POTS has a strong genetic component (although there is no history of it in our family) but can also be triggered by illnesses such as mono, the flu or even a bad cold. There is no cure for POTS, but, fortunately, most adolescents eventually outgrow it.

After she was diagnosed, Dr. Stewart put her on a program that included a medication that constricts the blood vessels and helps push the flow of blood toward the brain, exercise, extra fluids and salt, and more sleep. He also gave Sarah a gift: the knowledge that POTS is a temporary condition -- not a disease -- and one that is manageable while it is a part of your life.

When I conveyed this story to my friends and family, not a single person knew what POTS was, or had ever heard of it. When I tried doing research on it after Sarah was diagnosed by Dr. Stewart, there was a dearth of information, and that hasn't changed.

I worry that there are teens who are being misdiagnosed due to a complete lack of knowledge about this easy-to-diagnose condition, and are sent to school psychiatrists to deal with "depression."

The first and most critical step will be to make sure that parents and every junior and high school administration know about POTS, and understand that it can mirror some of the most common aspects of anxiety, phobias and depression. Worse, it can rob teens of months, sometimes years, of their lives.

Please help share the information, by sharing this article.

For more information about living your best life after 50, visit www.bestofeverythingafter50.com. Staying connected is a powerful tool. "Friend" me on Facebook and "Tweet" me on Twitter (BGrufferman).
2011 New York City Marathon Weekly Training Countdown (3 weeks to go!)
I'm running in the NYC Marathon in November to celebrate my 55th birthday and raise money for the Pancreatic Cancer Action Network.

Here's an update on my training schedule for this week:
Monday:5 miles using a run/walk ratio of 3 minutes/30 seconds
Wednesday: 6 miles using a run/walk ratio of 3 minutes/30 seconds
Friday: 8 miles using a run/walk ratio of 2 minutes/30 seconds (last week my last "long run" was 29 miles. I'm glad that's over.)

 

 

 

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Comments

[3z3kil]

11:13 PM on 10/25/2011

Hi, I am a teenage boy with POTS. I have had it for the last two and a half years, being sixteen now, I'm in the middle of the average progression curve. One of the sources cited in the article, and peoples posts here as well, give the impression that symptoms are only present when standing. This is not the case, out of any of the POTS patients I know. The majority have various symptoms, the only symptom that is triggered by standing is lightheaded/dizziness and/or fainting. The rest of the various symptoms, even "brain-fog" or other mental symptoms do not seem to directly correlate to standing. I went through my battery of tests, and aquired an arsenal of doctors. All but two suggested mental aspects, and I never once refuted them. I think it is not only irresponsible as a doctor, but also as a patient to deny the possibilities of mental condition(s). Seeing a specialist for depression wouldn't be a bad idea, as any chronic condition or unknown condition can result in depression. Also, I think it is strange that the majority of posters here are family members. To be honest, the story of how a patient grew out of it does not strike a sliver of hope in me, it merely increases my odds of being that 10-20% that don't grow out of it. It also leaves a blunt and universally repetitive reminder that parents believe they are being "supportive". Think about it.

[see-ellen2001]

11:53 PM on 10/23/2011

You have probably helped many others with this affliction.

[Ana2]

04:16 PM on 10/23/2011

I posted this twice, on my personal FB wall and on my page Developing Resiience, PLLC. Thank you!

[Sherri Breen]

01:32 PM on 10/23/2011

Thank you for this article. It's very informative and is helping to get the word out on POTS, which, as you noted in your article, is not well known by most doctors at this time. It's been estimated that 1 in every 100 teens develop POTS, and though it's not a "new" condition, it is a fairly new diagnosis, only having been named in the mid 90's so articles such as this one are important. My teenage daughter has POTS, and hopefully will be one of those who "outgrows" it. We're just now in the midst of getting the full diagnosis and getting to work on a treatment plan. For those looking for some excellent information about POTS, there are 2 websites dedicated to the condition that are excellent for said info. Dinet.org and dynakids.org and both also have a physicians list as well.

[JobSeeker1006]

10:04 AM on 10/23/2011

Re: Depression, It sounds like doctors said that the author's daughter had a solely psychiatric/psychological issue when she actually had a neurological issue which they didn't bother to investigate. This is problem that many people, especially women, with rare illnesses encounter. This is not to say that depression isn't a real illness for many. That is a completely different issue.

[JobSeeker1006]

01:13 AM on 10/23/2011

I'm an adult POTS patient (yes, this affects grownups too) and am thrilled to see this article on the heels of the NYT article. I've continued to have many ups and downs over the year, but have been mostly functional after getting meds. Many patients aren't so lucky, are labeled as anxious/crazy and have trouble finding doctors to take on their case. Even in Manhattan, which has some of the best doctors in the world, it is difficult to find a knowledgeable specialist in this area. I hope this publicity leads to increased awareness/interest in POTS from the medical community.

To the person who is suggesting meditation, I've been meditateing and it does not cure POTS!

[Barbara Hannah Grufferma]

09:23 AM on 10/23/2011

I'm so glad you found this article, and saw the one in the NYT. For sure, the New York City doctors I took my daughter to all suggested, at some point, that it could very well be "in her head." Until I saw Dr. Stewart. I would propose that anyone who suspects that POTS is behind their symptoms should contact Dr. Stewart. Perhaps he could suggest a doctor or facility in your community.
Thanks for reading and good luck!!
Barbara

[cfperks]

06:46 PM on 10/22/2011

Thanks for the article. My daughter was diagnosed with POTS at age 16 after mulitple trips to neurologists, cardiologists and others. The tilt table test resulted in an immediate diagnosis. She's now 24 and seems to have outgrown the problem. I realize now that I had the same disorder between ages 16 and 24. I think the problem is much more common than anyone realizes

[Barbara Hannah Grufferma]

09:27 AM on 10/23/2011

Amazing, isn't it? And, did the other doctors (cardio, etc.) ever once suggest that POTS could be behind it? Not one doctor we saw here in New York City ever mentioned it.
I'm very happy to hear that your daughter seems to have outgrown it. My daughter was weaned off of midodrine (the med to constrict her blood vessels) last year and had a massive migraine, a first for her. She was then put on an anti-migraine med (which stopped them from coming back) but she had side effects that happen in just a tiny portion of the population -- blanking out (not fainting), having "out of body" experiences, inability to focus. The neurologist who put her on the med insisted it could not be from the med because "in all my 25 years of practicing medicine no one has ever had those reactions." All we had to do was google the side effects for this med, and there they were, exactly what my daughter was experiencing. As soon as we took her off, she was 100% better. Be your own (and your child's) advocate. Always.
Thanks for reading . . . and good luck!
Barbara

[docman1]

12:28 PM on 10/22/2011

Re: the title of your excellent article, teens can easily have both depression/anxiety and POTS, SSRIs like Zoloft can be a great choice when properly used and are often better tolerated than midodrine---which is expensive and has some nasty SEs. Contrast showers, liquorice root and isometrics are nice, too. POTS was formally described in 1993, so a lots of the best Peds/GPs don't use that name, but we all have severe fatigued kids who faint in our practices. There is a lots of trial & error (& handholding) in coaching families through this mess. Not sure massive doctor shopping is the best idea, just find a halfway bright doc (or NP) who is motivated to keep working, and won't give up.

[Barbara Hannah Grufferma]

09:29 AM on 10/23/2011

Thanks for reading and posting this informative comment. I would like to just add that, unfortunately, even fantastic doctors don't always know about POTS, and therein lies the problem. I think that those who are involved in the lives of teens (schools, parents, doctors) should be made aware of POTS and the symptoms. That will go a long way in helping the situation.
All best,
Barbara

[intotheabyss]

12:11 PM on 10/22/2011

Thanks for posting this. I'm quite sure I had this condition as a teen and it was never properly diagnosed. I didn't really out grow it until my 30s. At least now, I know what it was.

[Sandra Barrow]

04:07 AM on 10/22/2011

For the record, it is very important to note that not only does this syndrome affect adults as well as children, but that it also does not always resolve, and for some is a permanently disabling illness.

[Barbara Hannah Grufferma]

06:12 AM on 10/22/2011

Dea Sandra,
This is absolutely true. It is a "temporary" condition more often in adolescents. In addition, there seems to be a connection between POTS and CFS (Chronic Fatigue Syndrome). Whenever it happens, it can be debilitating and life-altering. I'm thankful my daughter, now a 17-year old senior, seems to have completely outgrown POTS.
Thanks for reading and commenting,
Barbara

[JobSeeker1006]

09:56 AM on 10/23/2011

It is important to distinguish between POTS and CFS. Although some people with POTS have CFS, most don't. Both conditions need to be explored further by the medical community and have overlapping symptoms. POTS patients are chronically tired, but most don't have the other hallmark characteristics of CFS - sore throat, enlarged lymph nodes, low grade fever, etc.

[incognito-ergo-sum]

10:35 PM on 10/21/2011

I just called my grandsons wife to tell her about this. Every summer his first camping trip at 7K feet he passes out.

There are other times when it happens, but almost always at altitude.

Please tell me if that can be a factor and thank you so very much. Sharon in Colorado

[garystartswithg]

02:13 AM on 10/22/2011

I strongly encourge you to take your grandson to as many doctors as you can, especially university hospitals. I get abnormal headaches (clusters) and the average doctor goes back to the 70s when people used clusters to garner pain killers, which don't help anyway. there are people on the forefront of medicine, but in our society you have to seek them out, don't expect everyone to be on the same level, they aren't.
Altitude can be linked to many things -- I think your assumption could be correct. If you study anthropology different types of noses were created to breathe at different altitudes. Now you just have to get the medical community on board, and they often deny the obvious.

[Barbara Hannah Grufferma]

06:14 AM on 10/22/2011

I agree with GaryStartsWithG: your grandsons should be seen my doctors who can figure this out. The mother in the NYT article I reference in my article took her son to the Mayo Clinic which has, as it turns out, specialists who understand POTS. This might be a good option, depending upon where your grandsons live.
All best, and good luck,
Barbara

[James De La Cruz]

10:11 PM on 10/21/2011

Parents should check sons as well. I had these physical and mental symptoms throughout my adult life until it developed into reactive hypoglycemia (low blood sugar). It is some yucky stuff when it gradually sneaks up.

[copper and chestnut]

08:50 PM on 10/21/2011

I have POTS secondary to Ehlers-Danlos Syndrome, a genetic connective tissue disease. First off, thank you for helping to raise awareness about this not-so-rare condition of the autonomic nervous system. A few things: POTS runs the entire gamut in severity, just like most conditions. Some people like my mother can take one medication and work full time. Others, like me, take 17 and are too sick to leave the house except for doctors appointments. And while children and teens commonly see their POTS resolve completely with adulthood, people with adult onset are often not so lucky.

[Barbara Hannah Grufferma]

06:17 AM on 10/22/2011

Dear Copper and Chestnut,
You are absolutely correct about this. There are degrees of severity with POTS, as with many diseases and conditions. My daughter became debilitated, however, with the few lifestyle changes her doctor proposed coupled with midodrine (a med to constrict blood vessels) she was able to manage the condition until she finally outgrew it.
I wish you well, and please stay in touch . . .
Barbara

[phoebequeen]

08:36 PM on 10/21/2011

Very scary story. Thank you for sharing it. As a mother of a teen boy who has full work load at school and sports, I am always aware of injuries or illness that he deals with. Glad you listened to your instint and found another doctor when they were going to send her to a psychiatrist. I was diagnosed with an auto immune disease 20 years ago. But before I was diagnosed properly, one doctor told me I should seek out a psychiatrist too. I don't think if I were a man, he would have suggested it.

[Barbara Hannah Grufferma]

06:20 AM on 10/22/2011

Thank you, PhoebeQueen, for reading and leaving this comment.
As parents, we always have to be hyper-aware of what's going on with our kids, and for sure, be their advocates. it's amazing to me how quickly doctors will suggest that what one is feeling physically is caused by psychological reasons. The irony in this is that kids and adults who are going through these physical conditions, and aren't getting properly diagnosed and treated, can easily start to have psychological issues--depression, especially when they start to feel that no one believes them, or that they will never feel well again. It's very complicated . . .
All best,
Barbara

[MarenS]

08:04 PM on 10/21/2011

This is a very helpful article. When I was about 22, I had an incident while at work at a health club where I collapsed, while leaning against a customer service counter. During that time, I was taking an anti-depressant and was given all sorts of tests after the incident. It is not clear what my problem was, it could have been the medication, my low weight at the time, or possibly a symptom of epstein barr virus, which was later determined to be the source of my depression (which is why I was given medication). I was the child of a doctor, and this was 20 years ago. I can tell you that these kind of problems among teenagers and young adults can be very difficult to diagnose correctly, so thanks exposing another illness to encourage parents and kids to consider.