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POTSdad

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About POTSdad

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  1. We will ask my daughter's gynecologist about bio-identical aldosterone. We live in Canada, so it should not be too hard to get. This gynecologist specializes in bio-identical hormone treatments by using creams. My daughter currently is getting progesterone this way. My daughter currently is taking 0.05 mg Florinef in the morning, and 0.025 mg Florinef in the afternoon. For the most part, this appears to control Pots symptoms. If she takes anymore, she gets too thirsty at night. I've wondered about the long term effects of taking Florinef, so I'm guessing the bio-identical form of aldosterone w
  2. Songcanary - Our pharmacist put a label on the florinef bottle saying it must be kept in the fridge. The pharmacist just called back after contacting the florinef manufacturer. They said the florinef could stay at room temperature for up to 28 days. This will make life easier, since it will allow us to keep a few days supply of cut florinef pills where it is easy for my daughter to remember and access. Having to get a pill from the fridge twice a day has been cumbersome, and sometimes we would forget.
  3. We accidently left a bottle of Florinef pills (white color) at room temperature for 22 hrs. I called the pharmacist to see if they need to be replaced. The pharamcist researched it for 10 minutes and came back saying he could not find a definitive answer, but he thought it may be OK to continue using them. Does any one have a more definitive answer? My daughter takes 0.05 mg in the morning, and 0.025 in the afternoon. That appears to be most effective for her, and for the most part it controls her POTS symptoms. Any more makes her too thirsty, and any less she gets potsy.
  4. Thanks for everyone's feedback. The POTS doctor we saw today was not concerned about the unusually low heart rate we observed 2 days ago (35 beats per minute, blood pressure was 85/49). This low reading only lasted a minute or two. Subsequent readings were more normal. The doctor said sometimes bradycardia episodes develop for POTS patients. He was not concerned and advised my daughter to continue on the Florinef. He just said to take a bit more Florinef during the monthly cycle when the POTS symptoms are more intense. The doctor also said that my daughter would need to get off the Florinef wh
  5. My 19 year old daughter has been taking Florinef (0.075 mg daily) for almost a year. Her symptoms improved much with the florinef, although she would still get some POTS symptoms around the time of her period. Usually when she has a Potsy day, her BP is 95/65 and her heart rate while sitting down is around 90 BPM (it would go up to 140+ after standing for a few minutes). The last few months we have noticed a different pattern. Now when she has a Potsy day, her BP is low (95/65) and her heart rate sitting down is around 40 or 50. Today I got really concerned when her BP was 85/49 and her heart
  6. My 18 year old daughter has been taking Florinef for a year for POTS, and Depo Provera for 5 months. She had a laparscopy 2 months ago, where they removed endometriosis behind her lower uterus. The severe back pain is now gone!! We will see the gynecologist today regarding switching my daughter from Depo Provera and Lupron, to better control endometriosis reoccurence. My only concern is will Lupron make her POTS symptoms worse. It appears that the Depo Provera has also helped with POTS symptoms, so we are reluctant to rock the boat, especially now that she is getting ready for college. Has an
  7. My daughter went for an exploratory laparoscopy (for pelvic pain) a few days ago. She had to go for 16 hours without food or water to prepare for the surgery, before we found out that the surgery was cancelled (another emergency took precedence). Her POTS symptoms became very severe during the long wait, probably due to fasting from food and water. My daughter did take her regular Florinef dose (0.05 mg) a few hours before the surgery, but that was not enough to control the POTS. After the aborted laparoscopy, it took a few days to recover from the severe POTS symptoms. We had not seen this
  8. Has anyone else had severe symptoms after their first Depo Provera injection? Our 18 year old daughter just got her first Depo Provera shot 2 weeks ago, just 4 days after her period began (optimal timing). Usually she would begin feeling better a few days after her period is over, however the last 2 weeks she has felt far worse with severe pain, POTS symptoms, and other unusual symptoms. Has anyone else seen this?? Two days after her first Depo shot, it looked like her skin was bruised in her low back, abdomen, and the upper part of her inner thighs. We were quite alarmed, and called the famil
  9. My 18 year old daughter has now used Florinef along with a high sodium diet for 2 months. The results have been amazing!! No more syncope even without stockings. All the other POTS symptoms have also decreased significantly. Now instead of having 15-20 bad days a months, she has 2-3 bad days a month. What a difference! My daughter started the Florinef at 0.025 mg once a day and over 3 weeks she gradually worked up to 0.05 mg twice a day. This level seems to be working well, so we decided to leave it at this level. Her blood pressure is within normal limits.
  10. My daughter had to be off the program for a few weeks (for various reasons). She just restarted the program again from the beginning. She was encouraged enough the first time around, that she wants to do it again. My daughter also started taking florinef 2 months ago, and the results have been AMAZING! (see my post under Florinef thread) However with my daughter taking Florinef, she can no longer be officially part of Dr Lavine's study. But that won't prevent her from following the exercise protocol, it's just that her data won't be included in the study.
  11. Dr. Grubb documents that for developmental POTS (which usually starts in girls at age 14), that the recovery rate is 80% by the time they are in their mid 20's.
  12. My daughter tried several abdominal binders, and one she found finds most comfortable is made by Gabrialla. You could read the reviews on Amazon.
  13. Thanks Sue1234 for highlighting the link with PCS and Nutcracker Syndrome. We will ask my daughter's interventional radiologist to also check for Nutcracker Syndrome.
  14. Getting back to talking about Pelvic Congestion Syndrome, I'm wondering what percentage of POTS patients have PCS? It is clear that Dr. Rowe believes there is a link between the two conditions. It also seems to me that PCS is not tested for very often, since it is difficult to detect and PCS pain looks like so many other types of pelvic pain. My daughter saw 2 gynecologists, and neither one of them suggested to be tested for PCS. At the time we did not know my daughter had POTS, but even if we did know that, I don't think that any doctors are aware of the link that Dr. Rowe has observed. The
  15. Maggie, You asked how my daughter is doing with Dr. Lavine's exercise program. It seemed like for the first month she was feeling a lot better, and the POTS symptoms were less. That's also the month she began wearing compression stockings, so we don't know if it was the stockings, the exercise, or both that was helping. During the subsequent months she had several POTS episodes lasting a few days, which set her back. If you miss exercising 2-3 days, you need to back up a week in the program. The last 2 weeks she has had 2 colds, which has now set her further back. Since she has been away from
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