HoldOnToHope

My 16 year old, with POTS, is chilly lots of the time. She wears her fur-lined jacket around the house [even to bed some nights]. We got her a pair of UGGS last week, now she's wearing those 24/7!! Bundle up - you're not alone. In the summer, she's HOT and has the AC set so low that I'm the one wearing the jacket! Take care!!!

My daughter with POTS gets full very quickly....the answer for her: eat a little bit all day long. And, when she is able to eat more - GO NUTS and enjoy anything and everything!!

I hope the TTT gives you the answers you need. It did for my daughter and pointed her in the right direction [POTS] for treatment, which has made all the difference in the world. Best of luck to you!!!!

Diane, my daughter spent Sun-Thursday at Mayo, saw lots of great docs and had a number of tests done very efficiently. I was very, very impressed with the care we got. My daughter saw Dr. Fischer in the Pediatric Diagnostic and Referral area. How old is your child? I thought Dr. Low only saw adults. I've heard great things about him, too. Best of luck to you!!

I'm not familiar with this test. How exactly do they check blood volume? Is this becoming a routine test with some of your POTS doctors? Thanks!

Do those of you taking Florinef feel that a low dose of .1 daily would be enough to do any good for a 113 pound kid? It's so hard to judge which meds are doing what..... thanks for any input!

Do you think it has anything to do with flying? I've read it can be very hard on folks with POTS due to compression and dehydration...... Hope you're feeling better day by day. Pump the fluids and salt!!!

These are encouraging words. Can we keep this going?

I believe period problems are very common with POTS. You might want to look into a birth control pill that eliminates periods - Seasonal is one brand. My daughter [with POTS] had to try a number of brands of pills to stop her break through bleeding. She's on a slightly higher estrogen pill now [Zavia?] that has done the trick. She skips every other period by skipping the 4th week of pills and starting right in on a new pack. Her doctor has her get a period every other month. Hope you find something that works for you!

I've heard that Florinef can be a hair-loss culprit. I'd check into that if you're taking it. Good luck getting to the bottom of this and keep us posted!

Hopefully the tilt table test will give you the answers you need. It certainly did for my daughter. Your reaction to Midodrine - the tingling sensation in your scalp - is a common side effect and a sign the meds are working. Some people get used to the sensation and some can't stand it. We were told it is nothing to worry about. My daughter, with POTS, also gets the goodebumps from it. For her, the side effects are worth it....it makes her feel much better and she has a lot more stamina. She takes both FLorinef and Midodrine together. Good luck to you. You've found a good place for info.

I'm new here, but wanted to say "thank you" for offering to share what new POTS info they provide in a couple weeks. Hope you are resting up and feel well today!

Hi momforcem, A comment about your fear of next week's stress test and only being able to last 3 minutes. I was scared for my last one, too, and my doctor told me to quit worrying and said "It's not a competition. Don't worry about how long you last." It took the pressure off. Rest lots between now and then. Drink lots and lots and lots of fluids. We'll be thinking of you.

My 16-year old with POTS has been down and out for 2 days now, too. The temperature took a big dip in Wisconsin...days are getting short...argh. Hang in there, everybody. It you stare straight up from the bottom of the "canyon", you can see sunlight and it's very inviting.

Amy, hang in there. You'll be in good hands and the TTT will hopefully reveal what's up. It sure did for my daughter and she's now on meds that are doing lots of good. Drinking fluids is a huge help to her, too. She has a gatorade or water or something in her hand all day long. Good luck to you.

Sorry. Our problem is trying to put the weight on! Neither are easy!!

Any news? TX!!!

Just curious to know if there are any POTS teens taking on-line classes and what your experience has been. Have you had good support from your schools? Did your school have problems accepting credits from outside your school district's on-line program? Did they allow you to be a part-time student attending a couple classes per day AND take on-line classes at the same time? Thanks!

Hi Maureen, As you can see, your niece is not alone. You've found a wonderful place for information and support. My daughter went from being a cross country runner to a couch-bound kid within weeks. A variety of medications have really helped her, but it takes a while to get it all figured out. You're a wonderful aunt to be gathering information for your niece. I wish you my best!!

My 16 year old daughter's main complaint is also nausea. Have any of you tried Reglan for it? Anyone had motility studies done to see if that's the problem? Thanks!

My 16 year-old started taking 2.5 melatonin about a week ago and it's really been helping her fall asleep. I do have concerns about how long she should take it. Does anyone have any advice? Thanks much!

My daughter has had great success with a very low dose of Zoloft. Her POTS caused her a lot of anxiety and one full blown panic attack probably triggered by her racing heart. Since starting on Zoloft, she hasn't had any feelings of panic and only slight occasional anxiousness. She doesn't appear to have any side effects. Start slow! I think it makes a world of difference. Good luck!

Thanks, everyone, for your replies. I appreciate it.

My daughter described what was to us a new symptom last night. She said she felt like she had "internal tremors". Have any of you with POTS ever experienced this? She was extremely weak at the time, too. Thanks for sharing your thoughts.

This has been fascinating to read, so I'll add my daughter's info. Age: 16 DX: age 15 by regular pediatrician with NCS, but re-dx'ed @ Mayo with POTS @ 16 Home: Madison, Wisconsin Symptoms @ worst: mono-like fatigue/weakness, overwhelming nausea, sleep troubles, some anxiety Symptoms @ best: decent energy & mild nausea Meds that didn't work: Propanalol [beta blocker] made her weaker Meds that work: Florinef, Mitodrine, Zoloft, Zavia