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POTSdad

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Everything posted by POTSdad

  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.
  16. 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.
  17. 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 only reason our doctor agreed to give us a referral to a radiologist for PCS, was I highlighted that Dr. Rowe has observed a link between POTS and PCS, and that our daughter also was positive for many of the other indications for PCS. Hopefully this helps some of you if you think you might have PCS.
  18. 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 the exercise for 2 weeks, it appears her POTS symptoms are also more intense. We are going to have to start from the beginning of month 2 again, slowly easing into the program. So for my daughter it has been 2 steps forward, and then 1, 2, or sometimes 3 steps backwards. So in fact, it probably will take her 6 months to complete the 3 month program. I understand from the program co-ordinator that this is the way it is sometimes. All together, my daughter has seen enough of a correlation with exercise and how she feels, that she is still very committed to the program. She has tried to go to the physiotherapist 5 days a week, although now that school has started, this is not always practical. We have bought some exercise equipment to have at home, to give her more flexibility with the workout times.
  19. I double checked - estrogen causes vasodilation, progesterone causes vasoconstriction.
  20. nunntrio Thanks for sharing the details of your experiences with PCS. I also heard it is difficult to detect PCS, especially with a MRI lying down. I heard the radiologist we are seeing has other ways of detecting PCS. It may be the venagram procedure you describe.
  21. Thanks Lieze for sharing. If you have POTS and PCS, it makes sense to me how stockings alone could cause more blood pooling in the abdomen. If you squeeze the blood up from the legs, there is more blood to pool in the abdomen. My daughter wears custom fitted waist high compression stockings (30-40). She was told by her stocking fitter that even waist high stocking won't do much for abdominal compression, so she got an abdominal binder. The binder helps reduce her pelvic pain. Now she wears stockings with the abdominal binder, and it seems to be working better then either one alone. We tried different types of binders, and one that is most comfortable and least visible under clothing is made by Gabrialla. Pelvic Congestion Syndrome involves significant blood pooling in the lower abdomen, especially when estrogen is higher which causes blood vessel dilation. With PCS, the veins become varicose. What causes PCS pain is that these dilated varicose veins apply pressure on the reproductive organs and nerves. We think that is why when we tried various birth control pills to control the pain, that the symptoms got worse. The extra estrogen would cause more blood pooling. The treatment for PCS is an embolization procedure which involves plugging up varicose blood vessels in the abdomen, so the body can create new healthy blood vessels. The embolization procedure is done by an interventional radiologist using a catheter. This is a relatively non-invasive procedure with a very good success rate. Dr. Rowe mentions that 89% have a greater than 80% relief of PCS pain after embolization of ovarian vein varicosities. Dr. Rowe mentions in the case report, that the person with POTS symptoms who had embolization to treat PCS had these outcomes: - improved pelvic pain and orthostatic symptoms after embolization of avarian vein varices - no further syncope - now is able to stand for 7 hours during surgical clerkship - wants to be a surgeon That sounds like pretty good outcomes for anyone with POTS symptoms. That's why it seems to me that anyone who has POTS along with PCS symptoms, should look into getting tested and treated for PCS. It could make the world of difference. It makes sense that if blood pooling in the abdomen could be reduced, that POTS would also be helped.
  22. In the above webinar, Dr. Rowe was indicating that some people with POTS also have Pelvic Congestion Syndrome (PCS). There was one case report Dr. Rowe documented where the PCS was treated with embolization, and both the PCS and POTS symptoms resolved. I did some further research and it appears my daughter had many of the indications for PCS, including: - extreme pelvic pain that starts soon after being upright after waking up in the morning, and it gets worse as the day progresses - pelvic pain for 2 weeks out of the monthly cycle - pain does not respond to pain killers, but it does respond to non-steroidal anti-inflammatory drugs - other possible pain causes have been eliminated (ultrasound and MRI was performed to exclude ovarian cysts and endometriosis) I highlighted these findings to our doctor, and he referred my daughter to an interventional radiologist who is competent with diagnosing and treating PCS. We are still waiting for our appointment. I'm wondering if anyone else has been tested for PCS? If you tested positive, did you get the embolization treatment?
  23. I can not give you any advice about increading the level of compression stockings but wonder if you have ever looked to Pelvic Congestion Syndrome for the pelvic Pain. Dr. Peter Rowe (I think that is how you spell his name) who is a POTS treating pediatricain at John Hopkins believes it can be a contributing factor to POTS. The good news about this is that there is a simple procedure that can be done that has been shown to help. It is call a left Ovarian Vein Embolization. When you mentioned your daughters pelvic pain is sounded like something I have had to deal with. Anyway I just wanted to mention it. Thank you nunntrio, Yes, we did read Dr. Peter Rowe's material on PCS (Pelvic Congestion Syndrome). We already have a referral to an interventional radiologist that treats PCS. I would like to discuss PCS more, so I'll start another topic/thread on PCS. Thanks
  24. What compression rating do you use for compression stockings? My 18-year old daughter has used 30-40 waist high stockings for the last 4 months. Initially they seemed to help quite a bit, although now it seems that the 30-40 stockings are not as effective anymore (even brand new pairs). So we are going to go get her a pair of thigh high 40-50 stockings. I read a testimonial of a POTS patient that got significantly better when they switched from a 30-40 to 40-50. We figure it is worth a try. The other reason we are switching is that we found out our insurance will no longer cover 30-40 stocking. They will only cover stocking with a minimum compression of 40. My daughter has also been helped significantly with an abdominal binder, especially during the 2 weeks every month when her pelvic pain gets extreme. We will continue with that.
  25. We have received Dr. Levine's customized POTS Exercise Program for my daughter, and we have already completed day 1 of the program. My daughter, her doctor, and her physiotherapist are all committed to following the program and to carefully recording the results. My daughter's cardiologist is also very supportive. Reading the documentation we received from Dr. Levine, it became clear that we are part of the 300 patient study, which is yet to be published. Sorry for the confusion. The paper that was just published is the preliminary paper to the larger study. Personally, what I've read and the several anecdotal reports I've heard are enough to convince me it is worth a try. At this point we are trying anything that could help, especially if it has little or no side effects. A well designed graduated exercise program with support and accountability I think is a very good thing for anyone.
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