Thousands of teenagers have a hard time getting moving in the morning. But for kids with POT Syndrome, or POTS, the fatigue is debilitating. It keeps these teens from normal activities like sports or social events. Many can’t even go to school. How can you tell if you’re teen’s tiredness or other related symptoms are a sign of a real problem? Philip Fischer, M.D., a Mayo Clinic Pediatrician explains.
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Updated 10/20/08: Dr. Fischer has added the following information about POTS in response to the many good comments and questions.
Thanks to the 12 of you who posted comments since I last responded on this blog site. I appreciate your ideas and the good questions. The issues you all raise fall into several different sub-topics, and I’ll respond collectively to you.
Triggers. Several different sorts of situations seem to be able to trigger an adolescent to develop POTS. Usually, the trigger is an infection, and “mono” is a common trigger in North America. Much of the “mono” we see is caused by the Epstein-Barr virus, but other viruses cause similar “mono-like illness.” To receive a diagnosis of “mono” and to have negative “mono” tests usually means that the infection was by a non-Epstein-Barr virus germ that acted like the typical Epstein-Barr virus. Injury occasionally triggers POTS, but this is usually when the injury causes the teenager to be bedridden for several days. It would be very unusual for a minor blow to the back to trigger POTS unless it was so severe that the patient was stuck in bed recovering from the injury for several days.
Symptoms. There are lots of symptoms of POTS, and no single patient has all of them. Fatigue, dizziness, abdominal discomfort, and pains (headache or other) are common. Symptoms are typically, but not always, more obvious when standing still. Other conditions, however, can cause some similar symptoms. So, doctors evaluating teenagers with POTS need to be careful to make sure that an additional concurrent problem isn’t present, and they need to remember that some symptoms in POTS patients might be due to something other than the POTS. This means that other causes of fast heart rates need to be ruled out; rarely hormone-secreting tumors can masquerade as POTS. Chest discomfort is seen in a fair number of adolescents with POTS – this can vary from true pain to a feeling of difficulty getting enough air in to pressure to what resembles a “panic attack” (without the panic). These chest symptoms probably relate to altered abdominal and chest blood flow, and the chemicals that are associated with panic and depression and anxiety overlap with the chemicals that lead to the manifestations of POTS. At the same time, though, some POTS patients do develop depression and anxiety (very understandable when one has been feeling bad for so long) and might have actual panic attacks (instead of “POTS attacks”) causing the chest symptoms. Migraines and chronic daily headache and POTS commonly occur at the same time in the same person – treating the POTS seems to help the headaches improve, too. Other conditions such as ovarian cysts and kidney stones and liver problems would likely be due to something separate from the POTS.
Diagnosis. There are different ways that people classify POTS. Some differentiate between post-infectious POTS and POTS that doesn’t seem to follow a typical febrile or mono-like infection. Others separate high flow POTS from low flow POTS based on clever measurements of blood flow with tilting in a research setting. POTS can also be separated by whether there are anti-nerve antibodies in the circulation (seropositive versus seronegative), and these antibodies are found in about 15% of adults with POTS and in fewer adolescents. Others measure adrenaline-like chemicals in standing and lying positions and separate POTS into hyperadrenergic and normal forms. Practically speaking, though, we doctors don’t understand POTS well enough yet to use these different categories of POTS in ways that make major changes in treatment.
Treatment. It sounds like several of you have good doctors using helpful medications as well as non-medical means to treat POTS. Increased intake of fluids and salt and having regular aerobic exercise clearly seem to help. Acupuncture and other therapies seem to be associated with improvement in some people but have not been studied well enough to know who all might respond favorably. “Bad days” happen, and the most important way to deal with them is to continue to maximize fluid and salt intake and exercise. Some people suggest avoiding caffeine except as a rare treatment to avert “bad days” – but I don’t have experience with this plan to know if it helps – perhaps someone reading this note has tried this and can enlighten the rest of us. If someone hasn’t responded well to initial treatment, it is important to continue with medical care and to customize that care to the individual’s needs. Using “just” a beta blocker helps many POTS patients, but it is not unusual to need to add or change medications over time.
Prognosis. As best we know, adolescents with POTS usually do well and return to a fully productive life. It seems that about 80% recover completely. Optimism is appropriate!
Physician Recommendations. Increasingly, doctors are becoming aware of POTS. I have personally worked with physicians in several parts of the country who do good work caring for teenagers with POTS. Specific names and recommendations, however, would need to be discussed privately.
Again, thanks to each of you for the great comments and useful discussion.
Updated 11/24/08: Please see Dr. Fischer’s responses to some of the questions in comment #31 below. Also, if you are interested in scheduling a consultation for evaluation relating to POTS, you may call 507-538-4206.
Updated 12/18/08: More thoughts from Dr. Fischer:
This podcast/blog site has had lots of activity lately. Thanks to each of you for your great comments. It is fun to see mutually beneficial interactions between patients and families through this website. Similarly, I have enjoyed off-line and in-person contact with some of you in regard to more individual concerns. Thanks for the great discussions!
Here are comments in response to some of the specific issues raised during the past couple weeks. I hope these remarks will be of use to many of you.
Triggers of POTS. Lots of things can trigger the development of POTS, usually illness or injury or some other form of incapacitation. I don’t know of any evidence that environmental factors (chlorine or mold or any other such thing) actually trigger POTS, but there is still lots we don’t understand about this condition. Whatever the initial stimulus to develop POTS, it is the POTS that becomes the problem, and the initial trigger usually stops being an active concern.
Body Chemicals. Many adolescents with POTS have anxiety or depression – sometimes related to being high achievers who are falling behind and sometimes related to pre-existing conditions. Interestingly, the body chemicals (such as adrenaline and serotonin and dopamine) that seem to relate to POTS are also tangled up with anxiety and depression. Some patients seem even to have “panic attacks” that are more due to blood flow changes with POTS than to actual psychological panic. Of course, POTS is a complicated condition that manifests itself in a variety of ways. It is important to take advantage of various sorts of treatment, too. Many (perhaps even most) teenagers with POTS can benefit from professional psychological help – whether it is to deal with pre-existing anxiety, to manage depression that resulted from the affects of POTS, or to simply help cope with a chronic condition. In some patients, the resulting anxiety or depression becomes the main issue even though POTS is the underlying problem. “Downplaying” (while not denying) the POTS diagnosis might be useful if it helps keep patients and families looking forward to recovery (rather than focusing on problems).
Bad Mornings. Why are mornings so challenging for people with POTS? Great question! My guess is that it relates to blood flow changes after lying down for most of the night. With POTS-induced alterations in blood flow, it is hard for the body to get its circulation going in even a semi-useful fashion for a few hours. This leaves people tired. It helps to have plenty of salty fluids early in the morning, perhaps even 20 or 30 minutes before getting out of bed. And, people taking a beta blocker or midodrine sometimes find it helpful to take the first dose 20 or 30 minutes before getting out of bed, too. Some people advocate “head up training” with the head of the bed tilted up a bit during the night. In theory, this should help re-train the body to keep blood flowing upwards against gravity. I don’t, however, know of any real data to say whether this is useful in teenagers or not.
Diagnostic Criteria. POTS is a clinical “syndrome” made up of a variety of symptoms, and these symptoms vary from one person to another. There is not an exact way to define POTS based on symptoms even though there are lots of symptoms (fatigue, dizziness, nausea) that are common to many teenagers with POTS. Finding an excessive heart rate change after moving from lying to standing supports a diagnosis of POTS. But, some patients act exactly like they have POTS yet don’t have much of a heart rate change with standing or tilting. Other totally healthy people feel dizzy when standing up and have postural pulse changes of 40 or so beats per minute without having POTS. While a 30 beat per minute heart rate change is used as a diagnostic criterion in adults, it is not yet clear exactly what pulse change accurately differentiates POTS from variations of normal in adolescents. When the physical exam (like a lying to standing heart rate change) and history are typical of POTS, it is NOT always necessary to do formal autonomic testing with a tilt table.
Appointments. If an adolescent with health concerns wants to be seen by our team of physicians familiar with POTS, a call can be made to 507-538-4206.
Response to Medications. Medication is only one part of the treatment for POTS, and there is not always a quick, visible response to the initiation of treatment. But, lots of patients do feel a bit better within the few hours after taking either a beta blocker or midodrine and clearly notice feeling worse on days they miss doses. Fludrocortisone (yes, it’s technically a steroid, but it’s not the kind of steroid with scary side effects that gets people kicked out of the Olympics) works gradually when it is used (like drinking extra fluid and eating more salt) and doesn’t usually result in readily apparent changes in feelings. Serotonin-related medications, when used, work gradually “behind the scenes” so that it might take weeks to see favorable effects. And, there are “peaks and valleys” in the course of POTS with good days and bad days. It’s often hard to tell in the short-term how much changing symptoms relate to specific medicines and how much they relate to other coincidences. There is not evidence yet to say whether acupuncture or “alternative” treatments (such as licorice root) would be expected to help very many people, but most of these therapies are not dangerous.
Sports and Activity. Most any physical activity is good for people with autonomic dysfunction. Activities done in an upright position help improve conditioning and seem to help retrain the autonomic nervous system to help blood flow uphill. Swimming is good for conditioning and might feel easier than upright activity (since blood is mostly flowing horizontally and since there is outside water pressure pushing on the legs to encourage blood flow), but it might lack the benefit of training the body to push blood uphill. Certainly, it is good to continue with normal daily activities. The goal is to recover, not just to feel less uncomfortable along the way. I heard a great quote this past weekend – that “problems are not in the way of success; they are the way to success.”
Onward toward recovery!
Update (1/19/2009): With more than 60 comments (see below), this topic has been discussed thoroughly in general terms, so the comments on this post are now closed. If you would like to schedule an appointment at Mayo Clinic to see Dr. Fischer, you may call 507-538-4206.