Welcome

This site is for those searching for answers to a debilitating fatigue that strikes young people and leaves them struggling but unable to even get out of bed. Postural Orthostatic Tachycardia Syndrome (POTS) often goes undiagnosed, and parents are left searching for answers and help for their children. Many of these young people are isolated from friends and school because of their condition, and as a result are unable to complete their education.

Physicians, including pediatricians, and school administrators alike are often unaware of POTS and so don’t recognize the symptoms. There is no cure for POTS. Yet, there is good news! There are treatments that can help the young person with POTS function, complete their education, and remain part of their family and friends’ lives. More good news is that almost always the teen with POTS will “outgrow” the syndrome by early adulthood.

Often POTS begins suddenly after an illness – often viral with a high fever. My daughter caught mononucleosis at her elementary school in 5th grade in the spring of 2003, when she was not yet 11, and that was the onset of POTS for her. For the next 5 1/2 years, we searched for answers, physicians, medications, anything t0 help her. In the fall of 2008, we were referred to Dr. Daryl Lynch, Director of the Teen Clinic, at Children’s Mercy Hospital in Kansas City. At last we had found someone who immediately recognized her symptoms, was knowledgeable about POTS, and experienced in treating this syndrome. Following testing, the diagnosis was confirmed.

With effective treatment in place, she was able to cope with POTS as best as possible, and today at age 20 is beginning her junior year in college, as the symptoms of POTS gradually fade away.

Click on “About” to learn more about POTS. Posts to this site will include sharing of articles about POTS, to provide greater understanding for parents, teachers, physicians and other caregivers. We welcome posts and stories from others who have lived through or are living with POTS.

This site is dedicated to all those who are struggling with POTS today and those who are trying to support them and help find answers. And it is dedicated with gratitude to those who tried to help her along a difficult journey – a key group of friends, physicians, and educators.

A special thank you to Mayo Clinic Pediatrics for their excellent work, treatment, research and education about POTS.

10 Comments

10 thoughts on “Welcome

  1. Amy

    My daughter fell ill last year and developed POTS afterwards took us months to find somebody that actually could give us a diagnosis :( this summer she seemed to be better but school started and she has been so tired, her symptoms have come back horrible headaches and extreme fatigue. I am going to start her back on her meds and hopefully she will get better soon. Amy

    • I hope she is doing better, Amy. It is good that you have the diagnosis. I believe that so many children fall through the cracks because they do not get a diagnosis or have doctors who) can help them. I hope that the medications are helping. My daughter is very determined and independent and thought she should be able to do it herself without the meds. Finally she went to a new doctor (having “aged out” of pedicatrics). Thankfully, he is a wonderful doctor who understands POTS. He asked her if she was a diabetic would she not expect to take insulin. That hit home with her and she is back on her medication and it helps.

  2. rhonda gravedoni

    It is so wonderful to have found this site. Our daughter is now 16 and has been coping with POTS for 4 years now. When the pediatric Neurologist said to buckle up for a rollercoaster ride, she couldnt have described better.Nice to see there is hope!

  3. I am an adult sufferer of the disease diagnosed at the Marshville Clinic. I went years in small town E.R.’s basically being told I was “crazy” in a polite way. I finally could hardly get off the couch when my mother, an RN, forced me to Marshfield Clinic. A tilt test immediately confirmed the diagnosis. I am so grateful to the staff and Doctors there. It has been about 12 years now and I am doing much better. I now know what I am dealing with and how to deal with it.
    I am sympathetic to your children. It is an awful and debilitating thing to deal with. Best of luck to you all.

    • Vicki

      I was in the same situation a year and a 1/2 ago. The ER was so frustrating. I was diagnosed @ UPMC in Pittsburgh with a tilt, too. But they had trouble treating me. Put me on florinef & my BP would soar! Cleveland Clinic helped me by putting me on a cardio rehab. program. That really helped along with Propananol. Been able to go back to teaching second grade with very few flare ups. I’m 49 & I notice I get symptoms the week before my period:( I’m sick of that! I think the best advice is to not get too stressed and try to stay active, and of course a high protein diet helps me. Don’t forget to drink a lot of water, too.

  4. Jessica

    Has anyone expierienced partial seizures or shaking (like your extremely cold) during a fainting spell with this diagnosis?

  5. Thank you for your article. Our daughter got very sick with Pleurisy in December 2012. For the next 8 months she had 4 hospital stays, 6 ER visits, seen Neuro, GI, Rheum, Had so many tests done with no answers. She had Shortness of breath, chest pain, abdominal pain, joint pain and swelling, nausea, and vomiting, and difficulty walking at times. Doctors thought she had anxiety but we knew there was something wrong the doctors just didn’t get it! Finally in August 2013 we got into Mayo Clinic in Rochester, MN. They gave my daughter back her life. After 4 days of minimal testing including a tilt table test she was Dx with POTS. She was started on metoprolol, increased sodium intake, and water intake daily. She has bumps in the road but not pot holes or sink holes that derail days or months of her life. It is a roller coaster. But she fights through. As a parent you have to fight as well for your child in the medical community- POTS IS NOT RECOGNIZED BY MANY DRS AND IS NOT KNOW BY MANY MANY MORE! Thank you getting this information out there for other parents who may be struggling for answers!

  6. Melissa Edwards

    One of my 17 yr old twin daughters has been diagnosed with POTS. It all started 6 months ago out of the blue. It has been a long 6 months of many doctors and specialists and soo many tests and scans and soo much blood work. And soo many different medications. She has been misdiagnosed several times. Now the latest neurologist at Texas Children’s Hosp in Houston, Tx has told us she has POTS. She is taking propananol which has helped a little. They just upped her dosage a few days ago. This has been such a roller coaster and I wish she could just get off that ride.

  7. Corey

    Seems I’m the odd-man-out. I am a 41 year old male that was just diagnosed in June of this year. I may have got POTS when I was a 6th grader after contracting Mono. I’ve been dealing with different symptoms since then. It’s apparent to me that if I have had it this long, it could be chronic as Mayo stated.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com. The Adventure Journal Theme.

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: