JuneFlower Posted February 2, 2014 Report Share Posted February 2, 2014 So my daughter has recently started on midodrine and now nadolol for her POTS and low blood pressure. We are going Monday for a recheck. But tonight she passed out again. She hit head but not badly because she had knelt down. But I'm just so worried. And we are supposed to travel next week to a place where the closest hospital is 4-5hr drive away! We are thinking of canceling the trip. Ugh.June Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 2, 2014 Report Share Posted February 2, 2014 Of course you are worried. There aren't any rules for pots. Glad your daughter has you. I've been close to passing out but never have. Hope that never happens. No real advice... Not on meds. Thoughts are with you Quote Link to comment Share on other sites More sharing options...
Becia Posted February 2, 2014 Report Share Posted February 2, 2014 I can relate to her, I pass out on a daily basis, sometimes double digit amounts. I pass out even when laying down, which is weird to explain. I can't hold my hands above my head because it does it too. Don't have much advice, but I'm sending my thoughts to ya. I spend a lot of time crawling and I use a wheelchair now for safety. I do hope she gets a therapy that works for her.*hugs* Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 2, 2014 Author Report Share Posted February 2, 2014 BigSkyFam- thank you writing. I hope you never pass out too!Becia- wow, I'm so sorry for you! I guess no meds help? She has passed out about 4 times now in the last few weeks.June Quote Link to comment Share on other sites More sharing options...
sparrowkate Posted February 2, 2014 Report Share Posted February 2, 2014 June - Hello, I am another mum here. It is so worrying, isn't it. Just had a thought - did your daughter start passing out more frequently when she started taking the midodrine? My daughter, Issy, had this problem. Previously she just had blackout, dizzy moments but this changed when she started midodrine. It seemed that when an individual dose of midodrine wore off, she was very prone to passing out. So she collapsed completely quite regularly in the evenings. She had a few bumps on the head and a cut on her forehead. And we would hear a shout of "Mum, Issy's on the floor again..."She stopped midodrine and started fludrocortisone. Since then she hasn't passed out. I hope you can sort out something on Monday, at your recheck. Thinking of you.Katie Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 2, 2014 Author Report Share Posted February 2, 2014 Katie, thank you so much for sharing. Actually she passed twice before Midodrine was started and twice after. She wasn't on anything those 1st 2 times. I was told to monitor her blood pressure the last few days. It is still 70/30 when she stands up so iy is very low. 1/2 the time she is ok, other times, dizzy, other times she has migraines and stomach issues. Ugh. I'll definitely update on here after we see the cardiologist. I don't know how to keep her treatment outline on the bottom of every post like some do. That seems handy. Oh well. I'm glad your daughter is no longer passing out.June Quote Link to comment Share on other sites More sharing options...
Becia Posted February 2, 2014 Report Share Posted February 2, 2014 My meds help to a degree, which "isn't near enough!" In the words of the doctor I saw last night when they admitted me to the hospital. It's just a complicate case. I can stand for maybe a minute before I pass out, so wheelchair for safety. Im a work in process. Quote Link to comment Share on other sites More sharing options...
sparrowkate Posted February 2, 2014 Report Share Posted February 2, 2014 June, oh dear! Your poor daughter. It is miserable for you and her. Issy has migraines and stomach problems too, so I can relate to what you are going through. It is tough on them, isn't it. We just seem to get one bit of Issy fixed and then another bit goes wrong.Good luck with the cardiologist. Let us know how you get on.Becia - I hope they find something that helps you soon. I can't even begin to imagine what it must be like for you. Thoughts are with you.Katie Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 3, 2014 Author Report Share Posted February 3, 2014 Katie and Becia, thank you for your interest. Katie-yes it is hard for us all. I'm sorry your daughter also has those painful migraines and stomach issues. I really hope that when the dr fixes her blood pressure, the other issues will fix themselves.Becia-I really hope they can identify a central cause of your problems. Feel better!June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 3, 2014 Author Report Share Posted February 3, 2014 Ok so the update: The cardiologist says her b/p is slightly improved with the new medicine. He is hopeful. SHe can go back to school but no gym. She can exercise at home under supervision. We can still go on our vacation! I am very worried though because she lost 4lbs in 1 week. I am still waiting for an appointment for her Addison's test. It is snowing a lot here and the office is closed. Ugh. If it's not one thing, it's another. At least things are looking up.June Quote Link to comment Share on other sites More sharing options...
corina Posted February 3, 2014 Report Share Posted February 3, 2014 Glad your daughter is improving, hope you'll be having a great vacation! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 3, 2014 Author Report Share Posted February 3, 2014 Thanks corina! I hope she stops having all the other symptoms too…migraines, stomach aches…I wish we knew what was causing all of this.June Quote Link to comment Share on other sites More sharing options...
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