HoldOnToHope

My daughter is .1 and has absolutely no side effects. Be sure to drink plenty of fluids and eat salty foods or it won't be effective. Its purpose is to increase blood volume, but it can't do its job without fluids & salt. Best of luck to you.

My daughter takes the pill and skips every other period by skipping the 4th week of placebo pills. She really thinks it helps her POTS symptoms, but her doctor only wants her to skip every other period because she'd have such heavy periods if she tried to skip 3 or 4 periods. Good luck!!

My daughter had that a lot at first....seems lots better now. I think that her meds really helped: increased blood volume and vasoconstriction. Good luck!

I've heard and read that itchiness can be POTS-related. Have you tried a cool shower?

My daughter takes both..... .1 Florinef 1x/day and 10mg midodrine 3x/day. Both help for the reasons Melissa mentioned. She experiences no side effects. Midodrine did give her the common tingling scalp sensaton at first, but she no longer gets that. She started on the Florinef and was on that for about 9 months before adding the Midodrine. Her doctor always starts her on very low doses and works up gradually. Also, Florinef can't be started and stopped suddenly......be sure to follow your doctor's advice and drink, drink, drink!!! Pass the salt & good luck!!

Angela,

Thanks so much for sharing your story! I really appreciated reading it and I hope you continue to make progress. Another question came to mind as I read......did you try midodrine before the mestinon or did Dr. Low go right to mestinon and if so, do you know why? Did some test lead to this choice?

Thanks again, and keep us posted on your recovery!!!!!

DON'T START AND STOP TAKING FLORINEF!! When my daughter needed to be taken off of it for some tests last summer, her doctor weaned her very, very slowly. I think she was weaned off her .1/day over a 3-week period!!!! Your body needs to kick back in and do what the florinef has been doing. It takes time. Even at a low dose, you don't want to stop suddenly. Please talk to your doctor about it. Good luck with the med. I think it's been a great help. Another reminder when taking it....drink, drink, drink and eat plenty of salt.

My daughter takes Florinef .1 per day and a birth control pill called Zovia [spelling?]. Works just fine. I have heard that Yasmin contains a diaretic, so if that's the one you take, yo may need to pump even more fluids. My daughter got off it.....

My daughter takes 75 mg Zoloft. Helps a lot with POTS symptoms - especially the anxiety the racing heart can cause. I'd say it's worth trying one and if that one doesn't work, try another. Start with a teeny tiny amount. You may not need much. GOod luck!!

Thanks for sharing your great news. I love seeing this kind of post. Would you mind filling us in on your "POTS story"? How old were you when you developed symptoms? Did a virus set it off or a growth spurt or something that could be identified? When and how did you know you were getting better? Is your heart rate staying down or does it still go sky high when you stand up? My daughter seems to be getting better, too, but I don't know how to gauge it..... any insites to share? Thanks so much!

Awesome news about the biking!! Gives us all hope!!!! Hope you're wearing a helmet!! HAH!

My daughter has no side effects on .1 Florinef 1xday. She's never had to take potassium either, but eats lots of spuds and bananas. Don't take pot. supplements without talking to your doctor....too much can be toxic. If you're on a low dose of Florinef, you may have no problems at all. As someone else said, and I reiterate, drink, drink, drink and eat salty stuff. Pass the pickles!!

This is very, very, very rare. If you do have it, I'd head to Mayo. I think it's one of their specialties and you'd be in good hands. As for the needle....I had an "amnio" test with one of my pregnancies and the needle in the tummy was not that bad!! Be brave and let us know how things go.

My daughter takes Florinef to increase blood volume, which then helps with the HR and BP problems. She also takes midodrine to help the veins constrict and return blood to the upper body. Drinking 8 8-oz beverages a day is a HUGE help and she eats plenty of salty things all day long to help retain water. Good luck!!!

Daily nausea 24/7 was the first symptom my daughter experienced with her POTS. I believe her Mayo doc explained it as blood pooling. Many kids have blood pool in their legs, hence the blue-ish coloring, and many have pooling in their stomach area. The more she treats her other POTS symptoms, the less nausea she has, however, now and then it comes back - but in a milder form. Along with the bad nausea, she had no appetite. No wonder!!! But I have to say, it HAS gotten better with time. It was her biggest complaint for a long time and now it's taken a backseat to lack of energy.... which I believe she prefers!! I believe Zelnorm or Zofran [can't remember the label at the moment] is the drug she was given by her pediatrician to combat nausea. It's helps when the nausea gets really bad. The other thing that she would get with the nausea, was a gaggy feeling. She never threw up, but felt like it all the time. Not fun. The nausea and gaggy feeling would then trigger anxiety. Even less fun. Hang in there. I believe that symptoms wax and wane and this one sure did for my daughter.

Itching to know more. Please share anything you learn! Thanks!

Wish I could tell you where I heard this, but I can't remember....anyway, I heard that those people whose symptoms vary all the time are more likely to recover than those folks who have the same symptoms all the time. Has anyone else heard or read this?

My daughter was 15, in the middle of her 2nd cross country season, and in great health when she became ill. It appeared she had something like mono. She spent most of her time on the couch due to fatigue, general weakness and nausea and started missing lots and lots of school. She could no longer run. She battled nausea every day all day. She was miserable. She was diagnosed with POTS [TTT] and started on treatment. A year and a half later, she is much, much better, with fewer "crashes", thanks in part to better coping skills, good medicine and I believe [eternal optimistist] she is slowly outgrowing it. She takes florinef [helps with blood volume], midodrine [constricts the veins and helps get blood back to upper body & brain], zoloft [for anxiety & general well being], birth control pills [hormones help her feel much, much better] and melatonin [helps her get the sleep she needs]. She also drinks and drinks and drinks. She drinks a LARGE [blue - ] Gatorade every single day. This combination has made a world of difference. Symptoms wax and wane. A symptom like nausea will be gone for awhile and then reappear. Fatigue will come and go. Blood pressure and heart rate issues are probably there most of the time....but controlled. She'll have good days and bad days. Good weeks and bad weeks. It's the nature of the beast. She was probably at her worst last summer when multiple symptoms were all doing their thing at the same time, but she's now a part-time student, working hard to stay on a graduation track and some days, she is symptom free. When she "crashes", I remind her that "this too will pass" and to rest and let her batteries recharge. I hope this helps you. You are not alone.

Thought I'd get this back in circulation. It's interesting.

My daughter is definitely getting better - slowly, but surely. Some of this is may be due to getting on the right meds, but she is getting better. She was on the couch or in bed most of the time when first diagnosed a year+ ago. Now, she's out with friends, going to school part time and is constantly on the go. Sure, she "crashes" from overdoing, but it's usually worth it because she's been having some well deserved fun!!! Our doctor said that 4/6's of POTS kids get all the way well. 1/6 get much, much better with occasional relapses and 1/6 have something that continues for life. I hang onto the belief that my daugher is in the 4/6's group! Stay hopeful!!!! It may take time - maybe a few years. I totally agree with the "wheel" analogy. POTS has cycles. Ride out the lows....hang on. It will get better!!!! Optimist in Wisconsin

...then throw in an occasional panic attack just to keep things interesting! Ask your doc for something to treat the anxiety and it may help lots of other things. Hang in there! Things do get better!!!

Our Mayo doc told us temperature regulation is another POTS symptom just like eye dilation, digestion troubles, HR & BP. Fun fun. Bundle up! 2 degrees in Wisconsin this AM.

Sounds just like my daughter's POTS. Hope you're seeing Dr. Grubb soon. There's plenty of good treatment!! Hang in there!

Yup, anxiety is a POTS symptom at our house, too. Zoloft has worked wonders - helps with anxiety and also with other POTS-y stuff. Just knowing that anxiety can stem from POTS, is somewhat comforting. My daughter barely left the house when this symptom first began....now she's back out and about!! Good luck to you!!!

My daughter is on FLorinef and Midodrine and the combo really, really help her with her POTS symptoms. She had to be off Florinef for a test last summer and her doctor weaned her so slowly - I think it took 3-4 weeks - so that her own system could kick back in. She was on a very low dose [.1] and still the weaning was extremely slow and careful. You don't want to mess with this one. IF you're on Florinef, be sure to drink LOTS of fluids and eat those salty foods. It won't work unless you do. Beta blockers were not a good choice for my daughter - it knocked all the energy [what little she had] out of her, but it might be right for you. Best of luck to you and I hope you find the right combination of meds.