JuneFlower Posted January 31, 2014 Report Share Posted January 31, 2014 I'm new. My daughter who is 13 has POTS with overlapping severe low blood pressure. She is worsening and the cardiologist is still trying to get her blood pressure under control. I am scared and she has missed so much school. Has anyone had syncope and very low blood pressure along with the POTS? Also just needing support. So exhausted with all the doctors visits.June Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2014 Report Share Posted January 31, 2014 Hi June,Welcome. I'm glad you found this forum. Your daughter is lucky to have you. I know there are a few moms on here that will have wise words for you. Katie Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 31, 2014 Report Share Posted January 31, 2014 You found a good place. I have noticed a few good mothers on here. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted January 31, 2014 Author Report Share Posted January 31, 2014 Thanks for the welcome gjensen and Katybug. I am hoping I will find support and understanding here. I already have gained a lot of knowledge from the website. Right now my daughter has to stay home and rest for a week while starting a beta blocker. June Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 31, 2014 Report Share Posted January 31, 2014 I wanted to offer more help, but I do not have experience with very low blood pressure etc. I have become familiar with the presentation distantly. It would be better for someone that has experienced this first hand to comment. Good luck to you and your daughter. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted January 31, 2014 Author Report Share Posted January 31, 2014 Omg, my daughter has had POTS for a year but her blood pressure has been ok. She has had terrible other symptoms however. The low blood pressure is recent. I told the dr all the meds she is on and was told they couldn't cause it. But I just discovered that one of her meds Can cause low blood pressure and is postural! I am happy that this could be the problem but I am also kind of angry that they missed this. I am going to decrease this med tomorrow and see what happens. Then at least maybe we will just have the POTS to deal with. That is enough for sure.June Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 31, 2014 Report Share Posted January 31, 2014 What is the med? Quote Link to comment Share on other sites More sharing options...
corina Posted January 31, 2014 Report Share Posted January 31, 2014 Hi June, welcome to the forum! I'm sorry your daughter is in this boat, it seems though that you made an important discovery! Good luck to both of you! Quote Link to comment Share on other sites More sharing options...
Joann Posted January 31, 2014 Report Share Posted January 31, 2014 June I would check with your doctor to see how to safely cut down on the medications. You have to decrease some medications very carefully. If she is like me I am extremely sensitive to any little change. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted January 31, 2014 Author Report Share Posted January 31, 2014 Joann- Yes This drug has to be slowly discontinued unfortunately. I'm calling her doctor this morning. The med is Trazodone. It is an antidepressant but they also use it for insomnia. That is why my daughter is taking it. They recently doubled the dose. And now she is passing out. It is only a 5% occurrence rate so it may be a coincidence but I am hoping I am right about this. Thank you corina! It takes up to 3 days to get out of the body completely. And we are scheduled to see the cardiologist that day for repeat blood pressures. Perfect. Maybe we can go on our vacation after all!!!!June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 2, 2014 Author Report Share Posted February 2, 2014 So here's an update. It is almost completely out of her system. One more day to be safe. B/P still dangerously low. I have this sinking feeling that the med was not causing the low b/p. I think it would have improved at least slightly by today. Not a happy mom right now. Worried about our trip to a place that is far from a hospital.Does anyone know of any real danger of traveling way from medical help with POTS? My worry is she also has this low B/P and passes out. The cardiologist has been telling me the only worry with that is hitting her head or something on the way down. Is that all?June Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 3, 2014 Report Share Posted February 3, 2014 How is she doing? I'm concerned because this seems like a really rapid taper off the drug. What was it 2-3 days? Some Doctors don't warn patients that these medications must be tapered off of very slowly and if not can cause serious problems. While a drug may technically be out of your system in a few days, if you've been on it a while and have developed a tolerance (dependence, whatever word you want), a nasty withdrawal (or worse) can ensue. Keep a close eye on her. Once she is safely off, I would get still get some distance (weeks?) from the medication before deciding it wasn't contributing to the low BP, especially since it's a known side effect. The drug may have nothing do with it, but I just wanted to mention these possibilities because I've been through it and feel like I need to warn others - just in case. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 4, 2014 Author Report Share Posted February 4, 2014 Thank you for your input. Well we followed the drs advice. I don't see any bad side effects so far. In the past she has missed a few days of all her meds due to vomiting. She never had any issues then either. Hopefully she will be ok.June Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted February 6, 2014 Report Share Posted February 6, 2014 Has she ever been on Florinef? I have low blood pressures as well due to Hypovolemia and Florinef has been the #1 drug that has helped me manage the low blood pressures as well as the associated symptoms. I occasionally still have periods of low blood pressures but they are significantly improved with the florinef. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Author Report Share Posted February 6, 2014 lulusoccer-I'm not sure if they use that in children for POTS. I know they do for Addisons.It can cause mood changes which she is at risk for. It has not been suggested. The cardiologist said he has nothing else to give her.June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 6, 2014 Report Share Posted February 6, 2014 June,Florinef(fludrocoritsone) was the first med they prescribed for my son when he was in the 8th grade. It took his dizziness away almost immediately. He was on it for 2.5 years and his dizziness seems to be a thing of the past for the most part.Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 7, 2014 Author Report Share Posted February 7, 2014 Christy-well I will ask a dr (not sure which one) when I can. Thanks,June Quote Link to comment Share on other sites More sharing options...
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