Hi I hope this is the right place for questions on POTS.
I have been recently diagnosed with the condition and it's thought to be linked with my EDS (type 3). My tests also showed inappropriate sinus tachycardia. My tilt table was horrific with my BP dropping to 70/35 and my HR going well above 40 bpm more than my resting HR. I frequently pass out and standing for one minute results in a 40-45 bpm increase in HR. This is still occurring despite being on Midodrine.
I started Midodrine a week ago and am on 5mg 3 times a day. I'm noticing no difference to my HR when standing. It is pulling my BP up a few points out of the hypotension range for the first 2 hours after the dose but not much else.
My consultant referred me to the 2015 guidelines set by the Heart Rhythm Society and told me to refer doctors to this if I am ever hospitalised. I've been admitted to the ER 8 times in a year. I've passed out 7 times in 2 months. This is on top of the daily awful episodes I have.
I am unable to work at the moment and have to use crutches to walk for stability and support. I drink as much as my stomach can handle (same goes for eating salt) but due to gastro issues from the EDS and SIBO this is really difficult and I frequently end up vomiting.
I'm also having horrendous headaches and migraines. I take Sumitriptan for this but have enquired about being put on a preventative medicine. Ivabradine has been suggested along with Pizotifen. Has anyone had experience with these?
I've read a great deal on saline infusions for pots. Though this all seems to be in the states. All my ER admissions have rectified themselves with saline and antiemetics but I don't know where to start in trying to argue for this treatment on a regular basis. For some reasons the Heart Rhythm guidelines state this should not be done but this seems more to do with the risk of the PICC line than anything else and there have been no studies to disprove it's effects.
Has anyone else raised saline treatment with their consultant and how has it been reacted to? I'm desperate to get my life back after 15 years of misdiagnosis and I'm now so sick I can barely function.
Anyone's help would be greatly appreciated. Thank you and I hope your days are as good as can be right now. Love xx