Postural Orthostatic Tachycardia Syndrome (POTS)

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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POTS

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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.

Phil Fischer

 

 

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.

 

62 Comments

  1. renee welch
    Posted May 9, 2008 at 4:23 pm | Permalink

    can a 20 year old just diagnosed with Pots out grow it? She has been misdiagnosed since she was 11 years old.
    Thanks,

  2. Phil Fischer, M.D.
    Posted May 27, 2008 at 4:14 pm | Permalink

    Thanks for the good question. Most adolescents who develop POTS do seem to recover over time, and most of them recover completely. Until recovery takes place, treatment can be helpful (taking in plenty of fluid and salt, exercising regularly, and, often, using medication). Some continue to be bothered by fatigue and dizziness into their 20s, but many have recovered by then. For someone who is still symptomatic in her 20s, the prognosis for ongoing recovery is still very good.

  3. Kay Dyer
    Posted July 2, 2008 at 1:55 am | Permalink

    I really admire Dr. Fischer – the way he listens and his rapport with teens. I monitor Internet to see if any new developments have been made since my daughter was diagnosed. Is there a script of this podcast posted anywhere to make it easier to share with providers?
    A friend (MD)suggested that we try support hose. I was confused by the multiple options. Do you have any suggestions?

  4. Linton Murray
    Posted July 8, 2008 at 12:03 pm | Permalink

    My 79 year old uncle fainted at his wedding, 50 years ago. Recently, he fell and was hospitalized and still is 10 weeks later. After many tests, there has been no diagnosis. Over the years, he has been fearful and depressed from time to time. In the hospital, he was mostly unconcious for several weeks. Later, he said that he could feel the blood rushing from his head. Is it possible for untreated POTS to last a lifetime and what would the treatment be now?

  5. Joyce Bachtell
    Posted August 5, 2008 at 5:04 am | Permalink

    Is it possible to buy a tape or cd copy of the audio interview with Dr. Fisher concerning POTS. Our granddaughter (age 17) has this condition and we would very much like to have this information. If one is available please email us the address, cost and who to make the check out to. Thank you for the great work you are doing in this field. Joyce B.

  6. Posted August 5, 2008 at 1:42 pm | Permalink

    Thanks for your comment, Joyce, and your question about the audio copy of this segment. We will be in touch via e-mail about it.

  7. Kallie NeSmith
    Posted August 13, 2008 at 2:26 pm | Permalink

    I was diagnosed with pots this year. I’m very very tired and it is hard for me to wake up. I try everything the doctor is telling me to do. How do I get my energy back. 😦 I feel like it’s ruining my life.

  8. Phil Fischer, MD
    Posted August 13, 2008 at 10:29 pm | Permalink

    To Kay: Thanks for the nice comments. IF teenagers can tolerate wearing support hose, using hose around 30 mm Hg pressure (the label usually mentions the pressure rating) all the way up to the thighs can probably help prevent some of the pooling of blood.

  9. Phil Fischer, MD
    Posted August 13, 2008 at 10:30 pm | Permalink

    To Linton: I’m sorry to hear about your uncle’s troubles! Simple fainting (as is unfortunately not too rare at weddings or concerts or church services or other places people feel warm and stand still) is not usually related to POTS. But, fainting can be a sign of a related form of autonomic dysfunction called orthostatic hypotension. It would be extremely unusual for either POTS or autonomic dysfunction to explain your uncle’s more recent trouble, though. (But, of course, he should check with his own doctor. Merely hearing from a pediatrician on the internet might not be the most accurate way to make some else’s diagnosis!) POTS can last for decades in adults, but I doubt POTS is your uncle’s issue.

  10. Phil Fischer, MD
    Posted August 13, 2008 at 10:30 pm | Permalink

    To Kallie: I’m sorry to hear about your trouble, and I commend you for doing everything your doctor is suggesting – especially when your body is struggling so much these days. Has your doctor made regular aerobic exercise a part of your treatment? Not all doctors recommend this, but it seems to me that regular exercise is one of the most important keys to recovery.

  11. George Schmitt
    Posted August 16, 2008 at 5:55 pm | Permalink

    My daughter Amanda was hit in the spinal cord area with a liteture book almost two yearsago now.She was finally diagnosted with pots about 9 months ago and is doing better with treatment.Her symptoms started the next night after being hit.Could this trauma to the spinal area have caused the pots and is there anything or test that could verify it?She has indured many of the pots symptoms posted on all the web sites but the local doctors don’t believe they are related to pots.how can that be?

  12. Allison Guzzo
    Posted August 29, 2008 at 10:00 pm | Permalink

    I was diagnosed 3 years ago, but haven’t had a doctor who is educated and therefore never been treated. The only suggestion i’ve gotten was to stay away from caffeine unless I couldn’t stay awake. I’ve also been told that my chest pain, etc aren’t related to pots. Any thoughts? Are there certain sites to check out or doctors that anyone recommends?
    Also, is muscle cramping (hands, and rest of body) one of the symptoms?

  13. Posted September 2, 2008 at 3:09 pm | Permalink

    Dr. Fischer,
    My son has been treated for Chronic Daily Headache since 9/04. After reading about POTS I believe this is what he may have. He has all symptoms except the syncope. Is it possible he has daily headache with POTS?

  14. Dense Moudree
    Posted September 3, 2008 at 6:18 am | Permalink

    I have two daughters, one who is 23 and one who is 17. Altho they both seem to have many of the symptoms of POTS, my youngest daughter seems to be the most affected and has six years of migraines. In addition, I have many of the POTS symptoms. Is there a doctor in the Portland, Oregon area who is familiar with POTS that my daughters and I could all see?

  15. Danielle
    Posted September 5, 2008 at 5:40 pm | Permalink

    I have POTS with orthostatic hypotension. I was also diagnosed with panic disorder. I am on a beta blocker, midodrine, and a steriod. They help but i still have a lot of panic and feelings of “being unreal” my cardiologist tells me that that is a symptom but everyone i have talked to just has the racing heart and dizziness. I was on anti deppressants but i also have IBS from the POTS so i cant take them. Is this normal to have that unreal panicky feeling or is it just another problem that i can add to my list?

  16. Leanne
    Posted September 14, 2008 at 11:18 pm | Permalink

    Dr Fischer:
    I have Ehler’s Danlos Syndrome, AND POTS (due to the Ehler’s Danlos) and over time I’ve now found a routine making it easier to get up the morning, and work a full day, but I’m wondering if there’s anything I can do for the odd days when I get dizzy, shaky, nauseous, and spike fevers. (even if it’s just a short term fix to get me through the day).
    Thanks for taking the time 🙂

  17. Joyce Bachtell
    Posted September 19, 2008 at 6:14 pm | Permalink

    Dr. Fischer, Our granddaughter was first diagnosed with Mono(age 15) and was diagnosed with POTS at Mayo over a year later. At that time tests showed she had never had Mono.
    In the interview you mentioned there are several “types” of POTS. Is there a “test” to determine the “type” you have? Does the “type” determine or have anything to do with the treatment or recovery of POTS?
    We are very grateful for all you do to get the latest information and help to all who suffer with POTS. Your interview was so helpful to our family, as well as helping to explain it to teachers, friends and the general public. Our sincere thanks, Joyce Bachtell

  18. beth smith
    Posted September 27, 2008 at 1:18 pm | Permalink

    My daughter has POTs.But she also has alot of other medical problems like cyst on overies,kidneystones,elavted liver levels can this be related or do have any idea what else she may have?thanks

  19. Charlotte
    Posted October 8, 2008 at 4:18 pm | Permalink

    I am 17 years old. I have had POTS for two years now. I got it following a trauma to my chest. What are the chances of a full recovery?

  20. Cara
    Posted October 9, 2008 at 6:11 pm | Permalink

    I was diagnosed with POTS about a year ago and I am now on Florinef, midodrine, and atenelol. I am still not feeling any better. However, I do not have a lot of the classic symptoms. Changing positions does not seem to trigger an episode as the the diagnosis of POTS would suggest. My heart will begin to race or I will have palpitations and chest pain even if I haven’t changed positions for hours. They seem to come unprovoked. I also do not seem to have the debilitating fatigue or migraines. However, I have tachycardia every day, along with severe chest pain and palpitations even though I am on medicine. I have undergone multiple tilt tests, holter monitors, and EKG’s. Is there anything else that could be mistaken for POTS? It just doesn’t seem to add up. I think I may have been misdiagnosed but I can not seem to find a doctor in the New York area that knows enough about it. Please help, this is ruining my life!

  21. Lynn
    Posted October 14, 2008 at 1:21 am | Permalink

    Hi, my daughter was diagnosed with pots in 2006, she is now 16. She is on a beta-blocker but I really don’t know if it is helping at all! It seems every year her syptoms are worse. She can’t even go to school anymore. I pray every day that she outgrows it like her doctors say she will!

  22. Colleen
    Posted October 14, 2008 at 9:43 pm | Permalink

    Hi. My son was diagnosed with POTS in 2002,he’s 19 now. He was completely debilitated even with various medications. In March of 2007, as a last resort, we tried acupuncture. Within a couple of months, the improvement to my son’s well-being was awe-inspiring. I never would have belived it if I hadn’t seen it for myself. Acupuncture has litterally given him his life back. He went from being almost bed-ridden to attending college 3/4 time. He’s not 100% better and he still has some rough days, but overall, the difference is amazing. Although it’s expensive and most insurances don’t cover it (and I’m a single mom on limited income) I highly recommend anyone suffering from this illness to try acupuncture. Have fundraisers, ask family and friends for help, even get an extra job. Whatever it takes. You’ll get your life back. Anyone interested in learning more about my son’s experience with POTS and/or his progress can feel free to email me anytime. To Cara, try Dr. Julian Stewart at NY Medical College. He’s the one that initially diagnosed my son and seems very knowledgeable. Also, Dr. Robert Cavanaugh at Upstate Medical Center in Syracuse follows my son’s case and while he does not specialize in POTS, he is pretty familiar with it.

  23. Mary Gremp
    Posted October 23, 2008 at 7:28 pm | Permalink

    Hi, I am doing a paper on POTS for my PNP class. I would like to know what is important to share with my classmates that a PNP could do to help the POTS patient cope as a primary care provider.

  24. Linda
    Posted October 28, 2008 at 2:03 am | Permalink

    Dr. Fischer, Our daughter is 19 years old and has all of the symptoms of POTS. She has been unable to function for 6 months now. She was in the hospital for 3 weeks in July and was diagnosed with Secondary Adrenal Insufficiency. She was put on high doses of steroids and florinef but is not responding to treatment. The Dr.’s now feel that she may not have this because she isn’t responding. She has severe orthostatic hypotension with increased heart rate upon standing (120-140), severe abdominal pain, headaches, blurry vision, nausea and the worst is severe fatigue & muscle aches. She has also had high white counts (15,000) for several months. Because nobody can figure this out they are now looking for a psychiatric diagnosis. Before this she was extremely active (energizer bunny)and a Honor Student. Do you know anyone in the New England area that specializes in POTS? Are there specific tests that confirm a POTS diagnosis? Please help!!!!!!!!

  25. Jackie Rasco
    Posted November 1, 2008 at 1:48 pm | Permalink

    My daughter was just diagnosed with Pots. We are devastated. She is being seen at Children’s Hospital. She continues to pass out and has broken her arm and just been at the er for passing out and injuring her knee. How do we keep her safe. She is fainting about 4 times a day. Nothing seems to help

  26. Marcia
    Posted November 8, 2008 at 3:37 am | Permalink

    C0lleen,

    Do you live in the Syracuse area?

  27. Colleen
    Posted November 12, 2008 at 5:44 pm | Permalink

    Marcia, I live in the Binghamton, NY area-about 1 hr south of Syracuse.

  28. Jessica
    Posted November 13, 2008 at 4:31 am | Permalink

    I had a very bad case of “mono” when I was 15, When I was 18 I was diagnosed with POTS and now I am 20, and my symptoms are increasingly worse. It seems like as I get older, the syndrome gets worse. I was just prescribed Florinef and shortly after Levsin. the Florinef I can understand, but when i was reading the side effects of the Levsin it read: “Dizziness” “shortness of breath” “Fatigue” “migraines” along with oter side effects that are symptoms that I already have with POTS… Does this make any sense to you?? I live in Ohio Do you know any good Doctors??

  29. stacy
    Posted November 16, 2008 at 11:58 am | Permalink

    My daughter was diagnosed with orthostatic intolerance,(at the Mayo Clinic) but POTS was not mentioned. She seems to have many of the symptoms you have mentioned. She has Hypothyroidism, depression and panic attacks. I hate for her to be on all of these medicines if this is all related to POTS. Should I take her to a POTS specialist, or does this all fall under the “umbrella” of orthostatic intolerance?

  30. Jeanie
    Posted November 16, 2008 at 3:39 pm | Permalink

    Dr. Fischer – My 21-year-old daughter was diagnosed with POTS last year. She has had problems since she was only 11, but previous doctors just diagnosed her various symptoms: hypoglycemia, IBS, anxiety, etc. She has been taking Effexor since she was 11, and it helps somewhat, but whenever they try to reduce the Effexor (due to side effects), the dizziness, fainting, chest pains, etc. start again. Right now she is a senior in college, but in real crisis: seriously depressed, overwhelmed, sleeping all the time, etc. Where/how do we find a doctor who understands the inter-relationship between POTS, depression, medication, etc.? (The cardiologist who finally diagnosed the POTS has no understanding of all that POTS involves. She thinks that if my daughter is not fainting, then her POTS is under control.) We live in Florida and my daughter is in college in Washington, DC. We are desperate for a doctor who understands the intricacies of treating a patient with POTS. We need direction. Thanks you.

  31. Posted November 17, 2008 at 1:02 am | Permalink

    Thanks for your comments and questions. I’m getting in touch with Dr. Fischer and asking for his thoughts to see if we can provide further updates based on these last several comments. Of course he can’t diagnose over the Internet, but we will try to provide what general information we can. If you are interested in seeking a second opinion from Dr. Fischer, please drop me a note at aase.lee@mayo.edu.

  32. Posted November 24, 2008 at 8:31 pm | Permalink

    Dr. Fischer asked me to post the following responses to comments that were made since his last update.

    Thanks to everyone contributing such great comments. One of the values of internet sites like this is to hear practical advice from others who are sharing the journey through POTS. Yes, it is indeed possible to “get your life back” after suffering from POTS.

    Mary – Excellent question! I am glad to have you join the team who will be educating health care providers about POTS. If you connect with me personally through Mayo (Lee Aase has provided an e-mail address on this site), we can try to provide some specific resources.

    Linda – While we do not suggest specific physicians in this forum, other contributors to the discussion have mentioned names. Clearly, it sounds like good POTS treatment will help your daughter, and it sounds like the adrenal diagnosis and treatment might need to be modified. I hope you are able to connect with a physician who can help.

    Jackie – Fear not! Treatment helps – usually combining medications as well as other anti-fainting maneuvers. Your daughter was fortunate to have come up with a diagnosis, and it is reassuring that nothing more long-term or serious was found. Now, you “just” have the challenge of working with your daughter’s health care providers to develop a customized treatment plan.

    Jessica – It is common to mix medications for a variety of symptoms in patients with POTS. And, the side effects listed on information sheets often sound scarier than the medications actually are in real life. Your treatment does not sound unusual. It is interesting that several contributors to this discussion have wanted help in either New York or Ohio – which happen to be the home states of some excellent POTS specialists.

    Stacy – Thanks for the note. For others who are reading, I’ll reiterate what we discussed off-line. Lots of doctors use lots of terms for POTS, and there is overlap between the various sorts of autonomic dysfunction. Whatever we call it, treatment can help!

    Jeanie – Congratulations to your daughter on succeeding so well into her senior year of college! She should be considered an inspiration to many.
    It sounds like your daughter is able to travel. There are good POTS doctors on the East Coast, and I hope she connects with someone soon! Your desire (find a doctor who understands the inter-relationship between POTS, depression, medication, etc) is exactly appropriate.

  33. Posted November 24, 2008 at 8:41 pm | Permalink

    RE: Colleen’s post about acupuncture

    Colleen, I hope you come across this. My son, Reid, (l7 yrs) was diagnosed with POTS. After 3 long years of getting nowhere, we found our way from Spring, Texas to the Mayo Clinic (Rochester) this past Sept. 08. For the first time he was put on a beta blocker that finally offered some relief to these hellacious symptoms. I am writing in hope of finding out more about your acupuncture experience: how did you find someone qualified, what did you tell them and what type of treatment did they do? Dr. Oz recently stated on an episode of “Oprah” that they are finding that there is “something to be considered” in western medicine. Your comments would be greatly appreciated.

  34. Kara
    Posted November 30, 2008 at 5:13 pm | Permalink

    Dr. Fischer,
    After several ambulance rides, er visits, and 4 hospital admissions out of nowhere this past summer, the Cleveland Clinic (Florida) diagnosed me with POTS. I had all kinds of testing done before I got there, like cat scans, mri’s, numerous chest x rays and of right side, v doppler of my legs, ECGs, EKGS, nuclear stress test, gave a great deal of blood and was on a heart holter for a month. It was recommended that I have cardiac rehab because it was viewed as not a good idea for me to go straight back into the gym without supervision for my heart rate and because of the reoccurring bouts with intense fatigue, but insurance did not cover it even though I had stable angina.

    My life had completely changed from training horses to being in bed. I got to the Cleveland Clinic and while no formal testing was done, I was told I had POTS, I had been put on a number of different beta blockers including calcium channel blockers which I was allergic to, and ended up with Lopressor. I decided to get a second opinion at the Mayo Clinic in October where I was consulted with, had the tilt test done, and nerve conduction testing. While I can handle being uncomfortable, the nerve conduction testing was painful. It was recommended that I have an EMG done. I was finally sent the findings and I am very confused. I really need clarity. I am doing whatever research I can and hope to do a youtube video on POTS (there are several excellent videos on there related to the condition) as soon as I feel I can forward on the information correctly via my own story. I have been through alot; even so much as being tested by infectious disease for things such as rocky mountain spotted tick and anthrax because of my extensive work with horses coming from abroad and out of state. Just a scary experience.

    In the Mayo Clinic findings, it was said that I have postural tachycardia without orthostatic intolerance. Does that mean I still have POTS? Are they one in the same? The nerve conduction study came out abnormal only on the sweating part. I have diffuse Hypohydrosis? I haven’t been explained why this additional testing (EMG) needs to be done. Can you give me an idea of what lines the doctor may be thinking in having the EMG done?

    There are days I am fine! And there are days I feel a stiff cramping, tightness in my chest, almost a weakness, in my jaw when I eat a sandwich, and when I can’t finish a conversation or go to the restroom without feeling like I have run a marathon. I am being tested for Lyme Disease as well but am above all a confused and a tired patient.

    I would be so appreciative for any insight you may offer. I also have a fluctuating blood calcium level. It goes from normal to high. Could this be related?

  35. Laurie
    Posted December 2, 2008 at 2:55 am | Permalink

    Hi,my daughter, Morgan suffered a hip evulsion fracture, a serious sinus infection and mono all within 3 weeks last August. She lost her voice, her eyes are barely open, she has major stomach issues and she is exhausted all of the time. She has been hospitalized in Syracuse,NY, Rochester, NY, Boston, MA and finally spent a month at Cleveland Clinic Pain Rehab program for children with no definitive diagnosis. On Wednesday 12/3, Dr. Cavanaugh from Syracuse NY will be testing Morgan for POTS. Imagine my surprise when I saw his name in the comments posted here.
    I have to believe there is a reason I listened to this podcast today. Thanks to Dr. Fischer for his excellent information.
    I also want to say bless each of you for your determination. I know only too well what it is like to fight for your child.

  36. Laurie McCastor
    Posted December 2, 2008 at 3:48 am | Permalink

    One more comment – I strongly recommend CarePages.com as a way to keep friends and family updated on your life and where your child is at. It is also a major stress reliever to get your feelings out and onto paper.
    Feel free to visit the free site – ours is listed under MorganMcCastor.
    Thanks! Laurie

  37. Brenda
    Posted December 2, 2008 at 4:23 pm | Permalink

    My daughter has pots and I was wondering if it is bad for them to lay down.

  38. Phil Fischer, MD
    Posted December 2, 2008 at 5:02 pm | Permalink

    Brenda – good question! Lying down isn’t exactly bad for adolescents with POTS. But, it is helpful to stay up and active as much as possible during the day to help the autonomic nervous system recover. And, some medication used for POTS (such as midodrine) might lead to headaches when patients lie down for very long during the few hours after a dose is taken.

    Others of you – thanks for all the comments. As Lee mentioned, we try to keep responses on this site general and educational in nature. So, some of the specific stories mentioned here in public will only have more private off-line responses from us.

  39. Shelly
    Posted December 3, 2008 at 8:55 pm | Permalink

    My 10 year old daughter was seen at the Mayo clinic in rochester in February 2008. Dr. Caudill diagnosed her with Autonomic nervous system dysfunction (which if i understand the handout he gave us is related to POTS she cetainly had alot of the pots symptoms). We were told to treat with water, salt and some excercises. We also found out her ferratin levels were low (12) and that was contributing to her fatigue so she was prescribe iron and also gabapentin for her headaches. Happy to finally know what was wrong we headed home to work with our family doctor. She has gotten better but we have days where she relapses for lack of a better word. We allow her do do activities that she wishes as her energy allows however she has been experiencing pooling and swelling of the fingers when she is doing some of these activities. We are thankful that her case is milder than most but we are having a hard time getting any help from her doctor (to be honest even with the records from Mayo I don’t think he believes the diagnosis. He keeps suggesting shes depressed and if we put on depression meds she will suddenly be healed. He even has had a pyschiatrist look at her who didn’t think she was depressed). So anyway i need to find a doctor near or in Sioux Falls SD who has some experience with this.

    Thanks

  40. Laurie McCastor
    Posted December 6, 2008 at 12:06 am | Permalink

    Hi,
    We just got the official diagnosis of POTS today. I am so relieved to finally have an answer even it comes with lots of issues. We are starting Midodrine today. Any comments on now what, or how long before we see if it helps???
    Thanks!!

  41. Peggy Hilton
    Posted December 7, 2008 at 12:57 am | Permalink

    My grandson was diagnosed with POTS at the Mayo Clinic in Rochester, MN June of 2006. They said that he had the worst case that they had seen at that time. He had made several trips to the hospital by ambulance because he felt his heart was going to jump out of his skin. He was flown to Mayo and diagnosed with POTS. At the time he was only able to lay with his head down lower than his legs. It took them several days to slowly raise him and finally he was able to sit up. He came home in a wheel chair and was put on several medications. He then had to have a pacemaker and was able to have that removed within the first year. He was exercising and trying to eat a proper diet. He did not want to be on medication because the medicine was making him feel terrible. He has taken himself off all medicine and has been exercising often and was starting to do well. Of course, he would still get very tired and his heart rate would race but he was beginning to do better. When he was diagnosed he was an athlete and was a swimmer and water polo player so he was constantly in the chlorinated pool. I don’t know if this could have anything to do with the development of POTS or not but I wanted to mention the chemicals because he would break out with a rash a lot. He is now having extreme anxiety attacks and still does not want to take medicine because on one of the hospital trips again he had a bad reaction to one of the medications. The doctor would like him to be on adavant 3 times a day until he can get himself leveled off. I wonder if a chemical imbalance would have any thing to do with his disease and would natural supplements help him at all.

  42. Patsy
    Posted December 7, 2008 at 9:19 pm | Permalink

    Hi – Our 14 year old daughter was diagnosed with POTS in June, 2008 after a year of being ill (had mono in April, 2007). She is doing great with fluids, salt and exercise but still is not seeing great improvements in her symptoms. She has debilitating fatigue and constant nausea. She had a 24/7 migraine headache for five months. Those are under better control with Topamax. Her biggest problem is trying to wake up in the morning. She has to go back to sleep several times before she can get up. When she does get up she feels horrible for two to three hours before she is able to “function”. She gets 9-10 hours of sleep a night. We have tried wearing the Ted hose all night. She wakes up and drinks cold ginger ale, puts on 3 pound ankle weights and walks around the house. None of this is very effective. We have not raised the head of her bed because her doctor thinks that will make things worse.

    Can you explain to us why sleeping/laying down makes the POTS so bad? And how can we get her going in the morning?

    Thank you.

  43. Ashley Decker
    Posted December 8, 2008 at 6:09 pm | Permalink

    Hi,
    My name is Ashley, I’m 15 years old, and I have struggled with an undiagnosed illness for the past 2 years. I have been to doctors all across Michigan, Indiana, Illinois, and even to Cleveland Clinic for diagnosis, but so far, nobody has been able to find the cause of my illness. My family has been friends with the McCastors for a long time and I heard about Morgan’s symptoms, which were similar to my own. After recieving Morgan’s diagnosis of POTS, I did some research. I have almost all of the symptoms for POTS, including increased heart rate, dizziness, abdominal pain, nausea, and chronic daily headaches. I missed over 3/4ths of my freshman year of high school due to absences and I am now home schooled. I was previously a straight-A student, but now I barely get Bs in my classes because I find it hard to think and concentrate on my work.
    Any ideas on a test for POTS or recommendation for treatment?
    Thanks!
    Ashley

  44. Lori RN, MSN
    Posted December 9, 2008 at 3:15 pm | Permalink

    Hello.

    I am reading with fear all of the posting regarding POTS. My daughter, 17, is newly diagnosed. While we wait to see the neorologist our internist has given us an Rx for flordocourt. I am afraid to give my daughter steroids and am wondering if you know about licorice root and it that may have the same effect. She is severly nauseated and cannot function. She is at the top of her class in her senior year in HS. We are terrified that she will not be able to finish and go to college. Can you tell me about any benefit to acupuncture or licorice root or should we just stick with the steroids. I pleaded my way in to an early appointment with the neurologist so luckily we may get some answers. Thank you, this blog has been helpful. Any insight is very much appreciated.

    LD

  45. carolyn Whisler
    Posted December 10, 2008 at 4:17 pm | Permalink

    My 9 year old daughter was diagnosed with POTS and put on medications. Her episodes are fewer and do not last long but still makes completeing school difficult. Too many missed days. On her bad days (which last for a week) I don’t know how hard to push her. Should I make her go for a walk with my help. She feels so nauseous and dizzy she probably will cry. She is not a complainer and does not seek attention, on her bad days she feels bad. I feel at such a loss in knowing how to best help her

  46. Kathleen
    Posted December 11, 2008 at 6:07 pm | Permalink

    Hello Dr. Fischer:

    My son has been ill since he was 3 yrs old with polyarteritis nodosa (PAN) vasculitis. He is now 28 and has managed despite his many disabilities to become a successful singer,songwriter, guitarist, with 3 albums out from his late teens/early twenties. Plus he has written over 30 songs while he has been too ill to go to the studio lately and needs to return to the studio to complete what amounts to 3 more albums.

    We live in L.A. and he has been treated with a 6 month course of in-hospital cytoxan chemo and many courses of immune suppressants (cellcept, imuran, prednisone, etc) over the years. He has widespread mononeuritis multiplex, sensori-motor peripheral neuropathy, and also has autonomic neuropathy with several “episodes” and hospitalizations for POTS, however the POTS always seemed to get better before now.

    Over the past two years he has had serious flares of PAN that have prevented him from pursuing his career or a social life (in other word he is confined to the couch or chair most of the time). We thought it was primarily from the PAN but doctors found a new and worsening heart murmur and serious tachycardia with posture change: now we know that his POTS is the most likely single culprit.

    The POTS symptoms are so serious that it appears as if he is going to require a motorized wheelchair in order to lead a normal life (he is not very happy about this re stage performance, how it will affect his career, etc). Do you know if any other POTS patients require wheelchairs to function? He also seems to have problems with POTS while sleeping, associated with heart palpatations, etc. Does POTS affect many patients while they sleep?

    I feel relieved somewhat that all this seems to be due to POTS and not to a serious systemic PAN relapse. He was scheduled to be treated with Rituxan for the PAN but that has now been postponed until we see how he does with lifestyle adjustments for his POTS.
    We need to find someone who will help him make the necessary adjustments and transitions in managing his POTS with (1) everyday use of wheelchair to get functioning again, (2) how to manage his stage and studio performances, with doing vocal, guitar, harmonica, etc without having POTS get in the way – this has been a big problem, and (3) how to improve his physical core conditioning as much as possible without sending him into relapse. He does yoga and meditation but needs some more focused muscle and cardio strengthening work.

    Thank you for your interest in this subject and I look forward to hearing from you. I would love the opportunity to speak with you on the telephone if that were possible. Travel is impossible for us at the present time.

  47. Colleen Foote
    Posted December 13, 2008 at 3:15 am | Permalink

    TO: LISA RE: ACUPUNCTURE
    We tried the acupuncture as a last resort out of sheer desperation for relief. My boss had had some treatments and had huge success, so my son and I decided we had nothing to lose. We went to the acupuncturist that my boss went to. As I’ve said, he had relief from his headache after the very first treatment. He took a break from treatment this fall because his acupuncturist went back to China. After about 1 month of no treatment, his symptoms came back full force. We have found another acupuncturist (from another referral) and Randy has had 4 treatments from him with again, huge success. Please give it a try. You really have nothing to lose (except money) but if it works, it is so worth every penny. I took extra work, took out loans, friends donated some money-whatever it took to pay for the treatments. I will try to check back here more often, so if you have any questions I haven’t answered here, let me know. I wish we could talk person-to-person. Best of luck to you. My heart aches for all that are suffering with POTS and their care-givers. It’s not easy.

  48. Kallie
    Posted December 15, 2008 at 2:42 pm | Permalink

    Hi Dr. Fischer! I actually just was at the mayo clinic about two weeks ago seeing a autonomic neurologist and I just have a few more questions. I’ve been dealing with this condition for a while now and I’m just wondering what I should do if my blood pressure is stable and my pulse is over 140-160 laying down and then when I stand up it continues to increase. Sometimes this condition can put me off my feet for 4-5 days. My parents are really frustrated with me…telling me to do “normal daily activies” “take a shower” I feel awful enough asking for help but last week I had a hard time taking care of my daughter and I asked if someone could drive her to daycare she is a toddler and at that point I could barely get off the couch–they are concerned with money. My dad says I can turn my symptoms off like a light switch. I’m really discouraged with the support. Just this year I lost my house, job that I worked at for 10 years, my daughter and I had to move in with my parents and they are so stressed about us staying with them it’s making my symptoms worse. I fainted a couple weeks ago and fell face first 😦 I jumped from doctor to doctor and finally was able to get a diagnosis…all of the doctors that treated me knew something was wrong…but didn’t understand it. When I did the upright serum test in the Endocrinology unit the results showed my levels standing are around 675–that is without symptoms. It makes me wonder if I was symptomatic I wonder what the results would of been then.
    It’s exhausting….I was so active in the past and now I’m afraid to drive, sometimes even be alone if my pulse is really high. On the tilt my blood pressure was 120/80 laying down and when they tilted me it dropped to 73/52 and my pulse resting was 101 and it jumped 77 beats just during the tilt itself…I had that test done the first time at Mayo when I was symptomatic. Then I was called back to see a specialist but that week I was feeling pretty good. I just wish my parents would understand the condition instead of making me feel bad. I’m signed up for PT but now the doctors are debating if I should go or not because of the drive and the exercise might be too much.

  49. Isela
    Posted December 15, 2008 at 4:58 pm | Permalink

    Our son has been diagnosed with POTS. He will be 13 in January. His cardiologist (Dr. Pearse – Dallas TX)has been very helpful. The first cardiologist we visited, sent back a report stating it was anxiety. I wasn’t happy with that diagnosis when I kept seeing our son’s hear rate so high. I called a different cardiologist for second opinion. Dr. Pearse is going to put him on either flornef or a beta blocker. The thing that is different with our son is that he doesn’t have any symptoms besides the increase heart rate. It goes from 58 (deep sleep), 70’s when he wakes and is still laying down, 120’s-150’s when he stand up. If he does any walking or dancing it goes up to 180’s to 190’s. His only physical activity is PE in school 5 days a week. One of my questions is what activities work best for POTS children? He was in tumbling and was in swimming over the summer prior to POTS. What sports work best?
    Thank you,
    Isela

  50. Deb Lind
    Posted December 17, 2008 at 1:39 pm | Permalink

    Dr. Fischer – my 14 year old daughter was just diagnosed with POTS by a pediatric diagnostic specialist in Des Moines and the Dr. said we need to go to Mayo for a tip table test to get a final diagnosis. This is her third episode since April of prolonged periods of absolute exhaustion and malaise. She has nausea, stomach pain and headaches intermittently. She has battled stomach issues and sleeplessness for a couple of years at least. I am being told by another Dr.(a pediatric cardiologist) that we don’t need testing at Mayo b/c the treatment is the same with or without the tests. Drink lots of fluids and increase sodium intake. She has missed 2 weeks of school with this episode and I just want her to feel better. I don’t know what to believe and when I contacted your office, they said she wouldn’t be able to get in until March or April and then the testing will take 3-5 days. If she’s not symptomatic then, how can you diagnose and help her and what benefits will the tests provide? We know her heart rate goes up and blood pressure goes down when she goes from lying to standing. She is a straight A student and is a very positive girl. I need to help her but I don’t know what to do. I need help now, not 4 months from now but I don’t know how to get it. The Pediatric Cardiologist here downplayed the diagnosis, yet she fits the syndrome as you describe it on the podcast perfectly. Any help you can give me will be GREATLY appreciated! Deb

  51. Colleen
    Posted December 20, 2008 at 2:12 pm | Permalink

    To Dr. Fischer.

    The evidence that acupuncture will help is right here in my living room-my son. Please don’t discourage patients from trying this method. It may not work for everyone (just like not all medications work for everyone) but patients that are so very sick have absolutely nothing to lose by trying and quite possibly, they have everything to gain. Neither one of us believes his improvement is “coincidence”. He actually starts getting worse when he doesn’t have treatments.

  52. Becky
    Posted December 27, 2008 at 2:56 am | Permalink

    To Dr. Fischer,
    My 13 year old daughter was recently diagnosed with POTS a year after a mono like virus that she had that took her from a well child with no doctor visits to a child who has been on homebound 2 times in 2 school years. This past time on homebound, she was really ill after another virus. This is when we found the POTS> her 24 hour holter showed 2 bouts of afib and 4 hours of tachycardia and a hr or 171 at one point. SHe was put on FLorinef and Ritalin and after 4 weeks finally feels a little better. She is still fatigued and has a continual daily headache but with about 3 liters of pop a day (we tried other liquids with less results) she at least is no longer passing out. (she also has hashimoto’s hypothyroidism and glucose intolerance).

    However, she has not been to school yet and can only tolerate about 2 hours of homebound teaching then she is fatigued. I tried her on the treadmill yesterday and after 4 minutes she got a bad headache, chest tightness, and slightly dizzy. She didn’t pass out which was an improvement and wasn’t completely exhausted like before also an improvement.

    Her pediatrician is against giving us an extension for homebound at school until we can get the results from the month long monitor. I am concerned about sending her to school when clearly her POTS was causing issues other than a simple tachycardia.

    She hasn’t even been able to increase her activity yet much less change classes, band and gym at school.

    My question is what do you feel about homebound vs sending the child to school? Do we just send her back even when she is just now feeling decent without pushing? what recommendations should we have in place for children with POTS> She wants to be back in school, but when she goes back (if the same thing happens like last year, she misses at least 2 days per week. The schools do not allow liquids in class so she wouldn’t be able to drink like she needs to.) She desperately wants to go back and I want her back, but I want her to be able to stay in school and not miss days. I don’t know when to push and when to not push yet. Any suggestions or thoughts would be helpful.

  53. Phil Fischer, MD
    Posted December 29, 2008 at 2:15 pm | Permalink

    Thanks for the good comments and notes.

    School! This is often a huge challenge for adolescents with POTS. In general, I think school is very important – partly for the exercise and physical activity of being there and partly for the ongoing social contact (realizing that academic progress can be made either at home or at school). So, I “push” to keep kids in school. But, some POTS patients need to have a partial day schedule and then to build incrementally from there. I think it is often better to have planned half-day participation rather than to try for full-time school and end up missing half of it. And, schools should allow breaks and drinks and snacks as needed. Hopefully, your own doctors will be able to work out a good, detailed plan with you and the school.

  54. CLAUDIA PIANCA
    Posted January 2, 2009 at 7:41 am | Permalink

    Dr. Fischer-
    I was seen at Mayo in Oct. 08, but was given no solutions. I have had POTS for a year and have been plagued with positional tachycardia and pooling blood, which I think fatigues my body. Just getting out of my car gives me tachycardia. I have failed on beta blockers, midodrine, calcium channel blockers, florinef & mestinon.

    I excercise everyday, drink lots of fluids, salt load and wear compression hose, but nothing helps with the positional tachycardia which is very troublesome for me. Have you had any luck treating postional tachycardia? And have you seen it go away in adults?

  55. Posted January 3, 2009 at 7:10 pm | Permalink

    Dr. Fischer-I am 33 and just diagnosed with POTS. I also have a seizure disorder that was diagnosed 15 years ago during pregnancy.I had a severe case of mono at age 16. I am still learning a lot about this disorder but the basic salt increase has helped tremendously. When I get a HA, or other s/s come on I take an extra salt tablet, usually just an extra 500mg however this is on top of my 4,000mg of salt per day. My HA usually goes away and I don’t have to take tylenol, or ibuprofen, etc. However, how much sodium is too much sodium? I have had some problems ocassionally with swelling in my feet. But the sodium has also helped with fasciculations in my feet at night that keep me from sleeping. I was also wondering if my seizure disorder would contribute to this? And if the medications I am on would make my symptoms worse. Keppra and Topamax.I would appreciate any input you have on this. Thanks again.

  56. rhammer
    Posted January 7, 2009 at 3:23 am | Permalink

    hi i have pots syndrome have for 3 years now since a car wreck and hit my head ,its driving me crazy tried every med on xanex again with midodrine i just want my life back any ideas

  57. Sarah
    Posted January 8, 2009 at 9:47 pm | Permalink

    Dr. Fischer,

    Why do you suppose so many people are being diagnosed with POTS? It is something I had never heard of until my daughter was diagnosed. Now I know of several children in my community who also have POTS. Thank you for your time.

  58. Becky
    Posted January 14, 2009 at 2:37 am | Permalink

    I was diagnosed with POTS 11 years ago. So far I have not been able to find out why. Over the years I have found that if I stay off of all sugars,msg and food additives and just eat unprocessed meats, most vegetables, beans, eggs and some nuts I can keep my symptoms somewhat under control. Chocolate especailly will flair up my symptoms, does anyone know why carbohydrates affect POTS so much and is there anything I can do about it? I am getting sick of my diet but eveytime I cheat I pay for it. I just had a full endocrine workup and everything checked out fine.

    Thanks,
    Becky

  59. Brenda
    Posted January 14, 2009 at 2:39 pm | Permalink

    I was wondering how difficult it would be to get my daughter an appointment with you. She has pots syndrome.

  60. Phil Fischer, MD
    Posted January 14, 2009 at 8:17 pm | Permalink

    Again, thanks for the good comments that come to this website. It’s also been good to have contact with some readers off-line.

    Claudia – I “just” deal with adolescents, but I do hear that adults don’t always resolve their symptoms as well as adolescents with POTS usually do. Sorry! You’ve been to Mayo fairly recently and have tried lots of good things. I’d urge perseverance (with treatments and with contact with your physician(s)) and optimism. Even if adult POTS doesn’t go away completely, most people can, with treatment, improve a LOT.

    Amanda – If a patient is having swelling (usually eyelids in the mornings in teenagers, sometimes legs in adults), one would wonder if he or she is taking in too much salt. A 24 hour urine collection could be tested for sodium content; we try to get it up to 170 mEq or so. Levels much higher than that would indicate that it might be wise to back off a bit. Of course, excess salt can cause high blood pressure in adults, so your own physician should be guiding your treatment.

    rhammer – I hear your plea! We even titled one of our educational DVDs “How I Got My Life Back.” Your doctors should be able to help with both medications and non-pharmacologic interventions to help you.

    Sarah – POTS hadn’t even been recognized until a decade and a half ago, so it seems more common now. In fact, however, I think it is just being recognized more now. Some people figure that about 1 out of every 100 or 200 people develop POTS, so it is pretty common. Fortunately, people with POTS don’t have to feel like they are alone!

    Becky – Most of us still can’t answer the “why” questions about POTS, and it is pretty unusual (in my experience) for carbohydrates to affect POTS patients very much. You sound special! And, I wonder if there is also something else in addition to POTS going on with you. Some patients actually have a fruit sugar absorption problem (or something else) that gets added on to POTS and complicates their management.

    Brenda – our pediatric POTS group sees adolescents. Appointments may be arranged by calling 507-538-4206.

    Thanks to all for participating in this discussion. We can all learn from each other!

  61. Daniele
    Posted January 14, 2009 at 8:52 pm | Permalink

    When I was 18 was misdiagnosed with superventricular tachycardia which resulted in my doctor doing an ablation. Four months later symptoms came back in full force. I then consulted a new cardiologist which diagnosed me with a severe case of POTS after a tilt table test. He put me on midodrine which I have been taking since, I have also made all the recomended life style changes. Now I am 23 and still having severe issuses with this condition, almost daily. Could the ablation the doctor did in the past hinder my ability to grow out of this? Please help… I have seen many doctors who don’t seem to understand my condition. As for doctors who know about it they said they can only diagnose me then send me to a primary care physician. Any bit of information u can give me would be a big help since u seem to have a good understanding of this condition.
    Thanks,
    Daniele

  62. Katie
    Posted January 17, 2009 at 5:17 am | Permalink

    Hello!
    I was diagnoised with Neurally Mediated Hypotension when i was 18 and then with POTS when i was 22. At the time i was perscribed pro amatimine, pyridostygmine, and zoloft. (sorry for the misspellings)

    Since my visit in 2005 to the Mayo Clinic w/ Dr. Philip Low, I have been pregnant, had a baby and nursed for 16 months. I was not on any medicine during that time and seemed to be fine.

    Here lately i have been extremely tired, and i believe my POTS is coming on again full force. I have been reading alot about some of the drugs they are using and i was curious about the drug flornif.

    Does it need to be combined with any other medication? and should i be extra careful about monitoring my blood pressure while on it?

    My doctor here in Tulsa, Ok does not know much about POTS but is willing to refill my medication. The medication before always made me jittery and i didn’t like the side effects.

    I am willing to try something new but i feel like i need some more info.

    Thanks!


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