Journalists: For links to web-video and audio files, see the bottom of this post.
A Mayo Clinic study published this month in Pacing and Electrophysiology (PACE), suggests that a class of medications more commonly prescribed for older adults is a strong first-line treatment for teenagers with a debilitating condition called postural orthostatic tachycardia syndrome, or POTS.
Phil Fischer, M.D., medical director of Mayo Clinic’s children’s hospital and a POTS specialist, led the retrospective study of teenagers diagnosed with POTS at Mayo Clinic. The patients were surveyed approximately a year after their diagnosis, and while over half of those taking midodrine reported improvement in symptoms, all of those taking β-blockers had felt improvement.
Dr. Fischer provides an overview of POTS, the study results and their implications for treatment of future patients with POTS:
“This is a small study, but it is an important step because POTS is not well understood even within the medical community,” Dr. Fischer explains. “POTS is a real syndrome in which the patient’s heart rate accelerates abnormally when moving from lying down to standing up, and it causes a whole cascade of symptoms from fatigue to stomach upset that are often mistaken for depression. This study points to the important role medications can play, in conjunction with other changes, to help these mostly high-achieving young people get their lives back.”
Attention journalists: You may download the video or audio files for incorporation in your stories here: Video (.mov) Audio (.mp3)
A more extensive interview with Dr. Fischer providing more background on POTS is available on the Mayo Clinic Podcast Blog.
As you can see from the extensive comments in response to the POTS podcast, there would be no shortage of patients to possibly include in a news story about this study. Another interesting angle is that the brother of the patient featured in the 2006 Mayo Clinic Medical Edge TV story raised the funds to pay for the statistical analysis required for the study on medication effectiveness being reported this month in PACE.
8 Comments
I came to Mayo Clinic and saw Dr. Fischer 5 years ago when I was 12 years old, and he diagnosed me with POTS. I was very fatigued and in a lot of pain. When I first got on a treadmill, I could walk about 2 minutes at 3 miles per hour, and now I go 2 miles in 30 minutes, and I have plenty of energy for my day-to-day life. I was on midodrine for 2 years, and now, as long as I exercise every day I’m fine! Dr. Fischer, thank you so much for all your work on this! I’m very grateful – it certainly helped me!
Megan K
megan, i would to here how you are doing now. my daughter amber at 15 got real sick one year later at texas childrens they told her she has pots. this was only two weeks ago and she is sad with not alot of hope. any comments would be helpful. thanks stacy
I’m sorry to hear your daughter has POTS, I remember it’s not very fun! If you have any questions, feel free to e-mail me at musicmaidenblog@yahoo.com. I would love to encourage your daughter if I can!
Praise the Lord, I am doing excellently. Though I know this is not always the case with POTS. I have a friend who still struggles with it even with different medications. I exercise daily, Dr. Fischer told me I should do 2 miles on a treadmill 6 days a week. I recently started a running program and though it has been very hard (mostly because I can’t breathe – I’m not sure why that is) I can now run 1/2-3/4 miles at a stretch. I run more for the challenge, not for the health benefits; though part of it was I wanted to be able to run again – I haven’t been able to since I was 10 (before POTs).
Dr. Fischer told me three things that I could do: the biggest one was exercise. You have to start really slow, and it takes a long time to work up, but it really helps. The more I exercise the better I feel. The other 2 things were to drink a lot of water and eat a lot of salt. This is because the blood vessels around my heart were floppy, so that may help to firm them up.
Now, I did these three things for a month, and they did not make much of a difference, because I had had POTS too long for it to be effective. So Dr. Fischer put me on medicine. Since I have gone off of the medicine, as long as I exercise, I’m ok. Once we were on an extended vacation and I got slack with exercising, and I started getting dizzy and having headaches again, and even passed out once. So I still have to be careful. Also, if I eat a lot of sugary foods I feel awful, though that may not be connected to POTS.
I hope and pray you are able to find what you need to help Amber!
My youngest son is 14 years old and all symptoms point to POTS – fainting, fatigue, high pulse rate, etc. When I was 19 years old, I had Guillain-Barre Syndrome, with total paralysis and on vent for 40 days. Is there any way I could have given my child an autoimmune and/or neurological disorder?
In answer to Tracey C.- there is no question that POTS and other forms of dysautonomia have genetic components. My daughter has POTS and belongs to an organization called Dyna Kids. Many of these kids have siblings with disautonomia. I’m a migraineur, as are a number of the parents in the organization. Some part of the neurological wiring for this clearly runs in families.
Can you provide me with a list of physicians within the tri-state area of NY, NJ and Connecticut that deal and treat POTS syndrome.
The daughter of a very close member of the family has been diagnosed with this disorder this past spring at the Mayo clinic.
Many thanks for your assistance,
Frank
Tracey is my mother. I am 14 years old, and though I am a guy I still got it. It’s rather awkward explaining that part to people. I’m going to MAYO next week to see Dr. Fischer. I just really hope things get better. It’s really bad.. I’ve missed about 4 times as many days of school than I’ve gone.
My 16 year old is on meds but still cannot get up and go to school. Yesterday she couldn’t stand without her vision going dark until 7 pm. Her meds include nadolol (beta blocker), mitodrine (antihypotensive), and salt tabs. Any thoughts on next steps? Her 24 hour urine had very low sodium.