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POTSdad

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About POTSdad

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  1. We will be taking our daughter with POTS on a vacation and will be staying at a week at 9,600 feet elevation. I don't know if this is advisable, or should we look for something a few thousand feet lower. Our daughter is used to living at around 400 feet elevation. She seems to tolerate flying OK for several hours, which usually has a cabin pressure equivalent of about 7,000 feet. Drinking lots of water is a given. Are there any other tips?
  2. My daughter says it feels like her heart and head is going to burst. Her resting heart rate lying down is 46, and her BP is 107 over 64. Should we seek medical help soon? She will see her cardiologist/Pots specialist in 3 weeks, but I'm not sure if we should wait. She is taking 0.075 florinef per day, no beta blockers, and as much salt and water as she can handle. Any suggestions of what we should talk to the cardiologist about? It has been worst this month than before. It gets really bad for a few days every menstrual cycle. For the last 36 hours she has been so potsy, that she can not walk. Any input would be much appreciated. Thanks.
  3. My daughter had a significant flareup of POTS about a month ago, and has been in bed a lot since then. She is barely able to walk without someone supporting her, and has lost a lot of her endurance. If she has a good day she is able to walk a bit, but then it takes a few days to recover. She wants to gradually get back into exercise to reverse the deconditioning. What would you suggest? I was thinking of putting her reclining exercise bike in her room (it is too hard for her to go downstairs), and having her increase her exercise length very gradually while wearing a heart rate monitor, to ensure the heart rate does not go too high.
  4. 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 would be safer.
  5. 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.
  6. 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.
  7. 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 when she is planning on getting pregnant. I was not aware Florinef interferes with pregnancy. He said Florinef is safe to take for the long term, and that our daughter should stay on the Florinef for several years. Perhaps by then she would have outgrown her POTS, since developmental POTS (which first starts around age 14) usually resolves itself in the early to mid twenties.
  8. 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 rate was 35. She also had chest tightness symptoms. It did not stay there to long and a few minutes later the BP was back up to 105/70 and HR was 54. I thought POTS causes the heart to go faster, and not slower. Now whenever she has POTS symptoms it seems her heart is slower (40-50 BPM). Could it be that her electrolytes are off? Does she need an adjustment in medications? We will see her POTS doctor (cardiologist) tomorrow. Have any of you seen low heart rates together with your POTS symptoms?
  9. 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 anyone had experience with Trelstar Depot, which is an alternative to Lupron. I hear it works better for some people. Any input would be appreciated. POTS Dad
  10. 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 severity of POTS symptoms in a long time. We now have the laparoscopy rescheduled and we want to avoid triggering the severe POTS symptoms again due to the pre-surgical food and water fast. I thought of asking the hospital to start a saline IV drip a few hours prior to the surgery. Also we thought we would have her resting on a bed for a few hours prior to the surgery, instead of sitting upright. Has anyone had experience with this, or have other ideas?
  11. 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 family doctor, who thought it was not necessary to bring her to the hospital. We still don't know what caused the bruising. It has slowly faded the last 2 weeks. A few days later her heart was racing so fast, she felt like she was dying. Her POTS symptoms haven't been that severe in a long time. Usually the POTS symptoms are well controlled at this time of the month using Florinef. Yesterday she said it felt like someone had punched her in the abdomen. The pain was excruciating. Again this is not the time of the month she normally experiences PMS pain (2 weeks into her cycle). I'm speculating that perhaps the bruising and on-going pain could be related to Pelvic Congestion Syndrome (PCS). I read somewhere that pelvic blood vessels can burst sometimes with PCS. Next week my daughter is getting a Pelvic MRI Peripheral Angiography which will map out the veins in the pelvic area. During the preliminary consultation, the radiologist thought there was a 50/50 chance she has PCS.
  12. 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.
  13. 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.
  14. 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.
  15. My daughter tried several abdominal binders, and one she found finds most comfortable is made by Gabrialla. You could read the reviews on Amazon.
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