Postural Orthostatic Tachycardia Syndrome (pots)

Updated

My daughter has been suffering for several years and we have seen specialist after specialist all saying she is fine but she has purple cold feet upon standing, rapid heart beat upon standing, digestive problems, sleep problems, no energy, etc. etc. which are debilitating. We have recently read about POTS but she is afraid to be turned away by yet another doctor. Does anyone know of a doctor/specialist in Edmonton, Alberta, who is familiar with this disease?

Thank you so much!

8 Replies

Earliest Newest Votes
1

Being in the U.S, no I am not familiar with any doctors there.

However, has she tried any of the suggested lifestyle changes that can help treat and improve the condition?


Learn more POTS details here.

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2

Thank you for your response. Since hearing of POTS about 2 weeks ago, we have been reading all we can. And yes, she is trying the increased water intake, salt, no gluten, exercising when she feels up to it. The feet have improved - don't turn as purple - that was kind of a big improvement which she contributes to the salt and added fluids. Some days she is feeling better and thinks we are on to something but then, she still has the bad days with the stomach, lack of energy, and generally feeling sick.

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3

My daughter was diagnosed with POTS by Dr. Lawrence Richer (Pediatric Neurologist) at the Stollery. Drugs can help the dizziness, headaches and nausea but exercise, salt and lots of water will improve you faster. If you want some one on one support I am trying to start a group for parents of POTS kids in the Edmonton area. Post back please.

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4

Thank you so much for your reply.


I noticed Dr. Richer is a pediatric neurologist. My daughter is now 23. Do you know if he would see anyone over 18 or who people are referred to once they turn 18?

Again, thank you for your help.

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5

We are being referred to a neurologist in the fall as my daughter is turning 18. I do not know his name yet but will let you know when I do. The drug he prescribes is midodrine which raises blood pressure. The test for POTS is simple. Hook your daughter up to a blood pressure monitor. Have her lie down for 5 minutes, breathe deeply for 5 minutes, rest for 5 minutes, then stand her up suddenly (preferably on something soft to faint on). If her blood pressure drops and most importantly her heart rate increases more than 40 beats per minute when stressed she probably has POTS. There is help available but most important is that she push herself (safely) when she feels like she can't. There are lots of american websites where she can feel less alone and the medical community is becoming more aware of the syndrome. I tell everyone I know about it and try to spread the word that these girls are ill and there is help. Don't give up and keep pushing. They can learn to live well with this even though it will never completely go away. My entire family has this although not to the extreme my daughter has. If you are interested in meeting to form a support group, I could use the help. 4 years of banging my head against 'specialists' walls has made me want to scream but I would prefer to push to be heard. It is an endocrine problem but not one they are willing to treat. We were also kicked out of an office even though my daughter completely failed the ACTH test. Supposedly that is impossible. I know the frustration and anxiety of watching your child in pain and can lend an ear if nothing else. My thoughts are with you.

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6

Try pressure stockings. Have her doctor prescribe them to get the good ones. They cost $100 each but make a huge difference to the swelling feet and faintness.

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7

I am interested in a group, son just diagnosed and we live in Edmonton

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8

Hi Milly not sure you will get this. I am also in Edmonton, son diagnosed in august. If you haven't already done so, look up the POTS parent site online. It is worldwide, great info for parents.

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