Potsies Posted March 4, 2019 Report Share Posted March 4, 2019 Hey every one! Last week I finally saw a doctor (cardiologist) who knew a little about POTS! He admitted that he doesn't know a lot and that I probably know more about the condition than him, but he was very kind and actually listened to me and said he would do everything he can to help me, including personally calling the POTS specialist himself to see if he can move me up the waiting list. In the mean time he prescribed me 2.5 mg of Midodrine, 3 times a day. I have normal blood pressure, usually around 117/80, lowest its ever been is 105/70. On Midodrine the systolic pretty much stays the same but the diastolic increases to around 90. Even though I have normal blood pressure, I still get very dizzy and feel faint when standing. The Midodrine made me less dizzy (aka the world no longer spins), but that's about it in terms of positive effects. I've been taking it as prescribed, but noticed some very concerning side effects, not including the common scalp tingling and goosebumps. While on Midodrine my heart rate has actually been a bit higher, and I notice it more than before the medication. I can feel my heart pounding against my chest, and I am more out of breath. My vision also gets very blurry and I feel a sense of dissociation, like I'm disconnected from my environment. I get shaky, more lightheaded, and my veins in my legs and hands become HUGE. They become really blue and prominent. Never in my life have my veins been that visible, it's quite scary looking! Even my boyfriend and roommates pointed it out. When the Midodrine wears off, all these symptoms go away. My question is, Midodrine is a vasoconstrictor, yet it makes my veins really large and blue? Isn't large, visible veins a sign of dilation? Why would Midodrine cause this? Does my reaction towards Midodrine hint at what type of POTS I might have? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 4, 2019 Report Share Posted March 4, 2019 Curious, did you start taking the midodrine 3x a day right off the bat? My specialist had me wean on it. Even now I only take it as needed. I can take it up to 3x a day but only when I know when I am going to be on my feet. Did they warn you that you aren't suppose to lay down while it is in your system as well? The only side effect I ever get is the scalp tingling. It is weird but harmless. I have been taking it for about a year and a half now. Quote Link to comment Share on other sites More sharing options...
Potsies Posted March 4, 2019 Author Report Share Posted March 4, 2019 8 minutes ago, StayAtHomeMom said: Curious, did you start taking the midodrine 3x a day right off the bat? My specialist had me wean on it. Even now I only take it as needed. I can take it up to 3x a day but only when I know when I am going to be on my feet. Did they warn you that you aren't suppose to lay down while it is in your system as well? The only side effect I ever get is the scalp tingling. It is weird but harmless. I have been taking it for about a year and a half now. The first day I took it I didn't feel any different. Then the 2nd day onwards I started feeling awful. I was told not to lie down on it and I haven't. Every time I've taken it I've been mostly on my feet, which has been very difficult as it makes me so out of breath and lightheaded! Its very strange. I can't find any information on Midodrine causing these kinds of side effects, but I know its the Midodrine cause I didn't take it for a day and my heart rate was actually lower off it. Midodrine has been causing a heart rate of 140 when standing, when normally mine is between 120-130. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 4, 2019 Report Share Posted March 4, 2019 Hmmm... odd. I haven't noticed that but I also take a beta blocker. Maybe you need to take something else with it to help. Quote Link to comment Share on other sites More sharing options...
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