Midodrine Anxiety

[imapumpkin]

Last week I had my latest appointment with my neuro POTS specialist. Because my biggest symptom continues to be fatigue, she gave me a prescription for Midodrine...the lowest dosage there is. The problem is I've read and heard so many stories about bad reactions to Midodrine and I am very chemically sensitive (as many POTS people are) so I'm having serious SERIOUS anxiety about starting the medication. My appointment was last Wednesday and I still haven't started it yet...I'm anxious about taking it when I'm home alone in case I have a bad reaction. I don't know what to do. I'm going to talk to my therapist about it later this week but for now I'm frustrated because yes, I would like to try something that could help me feel better and my doctor says it could improve my fatigue...but at the same time I've had such a bad experience with sensitivities to medicine that I'm freaking out about trying this one.

Has anyone else experienced anything like this?

[Mydoggielovesme2]

Oh Yes! I am going through this right now. I try not to take anything anymore due to reactions. I find since POTS, that even if I can tolerate something for a time, I usually end up having a reaction to it with in a few weeks....Then I got shingles this weekend, and Drs have prescribed 6 different meds. I am so miserable from the shingles that I am doing the meds, but I look at them and get so scared, it takes me sometimes up to an hr before I finally get the courage to swallow them. I'm just waiting for the hammer to fall. So you are not alone in your fears. But I also know that many on this forum have had great success with the midodrine. I wish you the best in whatever you decide to do.

[looneymom]

Hi Pumpkin,

My son takes a very unusual high dosage of midodrine. The cardiologist and I visited about this last week. My son continues to take the midodrine because of low blood pressure problems. Do you have low blood pressure? I am assuming that you might because of fatigue issues. I would encourage to try a very low dosage to see if it helps with your fatigue issues. About 6 weeks ago, the doctor had me cut my son's dosage in half. It was a big mistake because his blood pressure really dropped low and he was much more tired. New medications are scary to try, I will admit. However, if you are able to start with a small dosage, it will be much easier and quicker to wean off if it does cause you problems. Medication is trial and error. You never know what will help your health condition unless you are willing to try the medication.

[dkd]

From what I've read, it only stays in your system a few hours (some people take it three times per day), so if you get a bad reaction, it'll be over with in a few hours.

I take a relatively small dose - 2.5 mg twice per day. My cardiologist suggested that I up it to 5mg twice per day and I got the tingly scalp, chills, and felt cold. I told him that and he was ok with me leaving it at 2.5.

I guess, my point is just try it and see what happens. Good luck!

[Guest Alex]

I tried midodrine a while back but it turned out to be the wrong drug for me.

Most of the side effects were manageable for me, except for the hypertensive episodes. The highest dose I ever took was 30 mg a day (15 mg/10mg/5mg every 4 hours). One thing I liked about midodrine was its short half life - any side effects were short lived, but then any benefits you might get would be short lived as well (that's why people usually need to take several doses throughout the day).

The one thing my dr didn't warn me about (I learned it the hard way) was the fact that you shouldn't lie down (say for a nap) after taking it as it can increase your supine BP; also you shouldn't take it within 3 hours (I think) of going to sleep at night for the same reason.

I'd say start low (1/2 a pill or even 1/4 if you can), see how your body reacts to it and go from there.

Best of luck and keep us posted.

Alex

[Hope]

Hi Imapumpkin,

I'm on a low dose of midodrine also. I hate to take meds because I am so sensitive and was terrified to start taking the meds that I'm on when I started. In fact I'm terrified everytime they refill them because I'm afraid of getting a bad batch! Anyhow, I have had almost no problems with midodrine. I take a half a pill at a time of the 2.5mg and take another half as needed through the day. I have a ligament in my chest that swells for different reasons and when I take a whole midodrine, this will swell and cause me pain. So that's why I do half at a time. But other than that, I have had no adverse reaction to midodrine. Some days it's just not enough and my BP just hangs low and since I won't take any more I get stuck having a low day. I would not play around with your dose though without talking to your doctor. My doctor has approved what I do for me. I haven't changed to any other meds to boost my BP because I am so sensitive, I just don't want to deal with changing right now.

I hope you do well with it.

Hope

[targs66]

I'm also ridiculously oversensitive to medications. I take 1/4 or even 1/8 of the recommended dose of anything new so that I can gauge my reaction. I did this with midodrine and did okay. I did have some of the weird side effects (like chills) but they were very bearable. My only problem with it was that after a few hours of feeling quite energized, I felt really, really tired, like I had overdone it. I stopped taking it for that reason: almost felt like I was making myself too wiped out by the initial energized reaction. I'd say that's the same effect I get from too much caffeine, but the nice thing about midodrine is that it does leave your system quite fast. I'd suggest trying a very, very low dose and see how you do. Good luck!

[Relax86]

Also over sensitive to meds I waited 3-4 months before I decided to try this drug. I would have taken it way sooner if I had known how helpful it would be, It worked really well for me. Side effects were nothing compared to POTS sx that came with low BP. I only needed 2.5 twice a day. And it does leave the system pretty quickly....3.5 to 4 hours for me. Good luck