Finally Diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS)

7 Responses to Finally Diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS)

1. Mary Jo Pienton says:

   August 28, 2011 at 8:22 pm

   My daughter was also diagnosed at Mayo with P.O.T.S. back in October of 2009. While her condition has improved mostly through exercise therapy she still cannot function as a normal 20 year old. What has made the difference for Katie? I would love to know in case there is some medication that my daughter has not tried that could help. Right now she takes midodrine. I thought I understood Katie to say she does not have the problem with the blood pressure which I think is the biggest factor in my daughter’s condition and maybe that is what is keeping her from moving towards the ability to not be so lightheaded and tired. Any insight you can provide to her recovery would be appreciated. Thank you.

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   • Mountain Mama says:

     October 12, 2012 at 12:08 am

     Have you tried salt tablets? My 11 yr. old has POTS and her doc prescribed fludrocortisone and 3 grams of sodium (NACL)/day. this began to help with the dizzyness and fatigue immediately! she also takes neurontin for nerve pain. Her other symptoms were nausea and vomiting, and we started having those problems again, so we are getting treatment with the NeurOptimal neurofeedback machine. It seems to be helping! I found http://www.potstreatmentcenter.com in Dallas (they have tons of YouTube videos too), but found a therapist near our hometown who uses this machine. I don’t know what they use at the Dallas place. Try neurofeedback, and ask your doc about salt and fludro. Could work for you!

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2. Lovely Carter says:

   September 1, 2011 at 11:23 am

   I was recently diagnosed with POTS after being told by many physicians that I was anxious or depressed. It is a huge relief to finally have an answer for all of my horrible symptoms.

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3. Roba Isabelle says:

   October 9, 2012 at 1:29 pm

   Ma fille a depuis presque 3 ans le syndrome de Pots.Elle n’est plus scolarisée ou quelques jours par an.Des médecins lui ont déjà donné de la corthisone,du sélénium,des bétabloquants(qu’elle ne supportait pas).Elle a été hospitalisée beaucoup de fois.Une seule chose l’a aidée c’est la pilule contraceptive pour remonter sa tension (ce qui marche bien).L’acupuncture l’a soulagée pendant un moment et maintenant plus.Nous n’en pouvons plus cela fera 3 ans qu’elle a ce syndrome.On me dit que c’est du au fait qu’elle ait pris 11 centimètres en 6 mois.En fait ils ne savent pas d’où cela vient!On m’a parlé de la mayo clinique où il y a quelques cas qui ont ce syndrome de Pots et on me dit que là-bas,ils savent comment soigner Pots.Je vous en supplie,ne nous laissez plus comme cela,répondez-moi.Merci.

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   • susanashephard says:

     October 14, 2012 at 2:16 am

     Nous sommes désolés que votre fille a le syndrome de Pots. Mercia pour avoir nous écrit et il serait mieux téléphoner au Centre des Patientes Internationales pour plus information 507-284-8884. Si vous avez des autres questions, s’il vous plait de nous informer. Merci.

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   • mayet says:

     December 21, 2012 at 4:43 pm

     Habitez-vous en France? Je suis dans la même situation que vous mais les médecins ne connaissent pas le POTS dans la région ou j’habite et j’aimerais avoir une diagnostique plus précis pour ma fille.

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4. Crista Procopio says:

   February 10, 2013 at 5:18 pm

   Here is a new POTS Support group! Blog: http://bit.ly/12dNM9J Twitter: @withasideofsalt Facebook: http://on.fb.me/11d0Fk4

   Hope this helps!

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