Anyone take midodrine for POTS and still take a daily nap?

[Scotty81]

My 23-year old daughter was diagnosed with neuropathic POTS.  She tried Florinef, at 1/4 of the smallest dose, and she took it in the mornings, but she had terrible insomnia from it.  It also took about 2 weeks for those side effects to fully go away. 

 

Her doctor recently prescribed midodrine as an alternative.  (She is already doing the standard non-pharmacological treatments of increased salt, water, raising the bed, wearing compression stockings, etc.).    Midodrine's warnings on the drug say not to lie down after taking a dose.  My daughter is still suffering from fatigue (from POTS and other issues), so she is wondering how to fit in taking midodrine with an afternoon nap that she has to preserve what little energy she has.  

 

I saw somewhere that one person just avoids the afternoon dose (to avoid having their blood pressure increased while laying down).  While I understand the goal of avoiding this potentially dangerous side effect, my concern is that midodrine's benefits would be diminished if one skips an afternoon dose.  My daughter's blood pressure is typically around low 90's over low 60's.  On one hand, if her blood pressure increases while laying down, it might just rise to normal levels.  On the other hand, that's not something that we'd want to take a chance on.

 

Even though my daughter intends to start and increase her dosage slowly of midodrine, I wondered if anyone else has taken a nap while on this drug, and what their experiences have been.

 

Thanks in advance.

Scotty81

[yogini]

The best thing to is ask your dr and/or pharmacist, My understanding is that you can skip or delay the dose of midodrine in order to take a nap.  Skipping a dose shouldn't reduce the effectiveness of midodrine - I assume she isn't taking it at night anyway, and this should be no different,, Though not ideal, I think a lot of us also wind up taking naps with compression hose on or midodrine in our systems. 

[Katybug]

Can she arrange the timing of her doses and nap so the nap happens right at the end of the morning dose? Then she could take her second dose when she wakes up. Or some variation of that arrangement so she delay a dose by 1-2 hours while she naps at the end if the prior dose.

Or she could try napping with her upper body propped up significantly.  I used to have to sleep like that due to GI issues and it takes a few days but you can learn to adapt to sleeping like that.

[Clb75]

I have to take an afternoon nap, typically for an hour or two also. When I was on midodrine, it was prescribed three times a day, but I skipped the second dose so I could sleep. Since each dose is short acting, I figured it was a waste to take it while I was sleeping, and wanted to save the effects for when I was up and needed to move around. I took the last dose around 3:00ish, which lasted through the early evening but out of my system in time for bed. 

[Kaitlyn]

Scotty81 - first off sorry your daughter is dealing with all of this. Second I am not a physician so everything I am about to say is based purely on my personal experience.

my normal BP all of my life has also been 90/60. Resting for me while taking Midodrine was no problem. (By the way I had the same reaction to Florinef that your daughter had and other side effects as well). My BP never went crazy high on Midodrine. The other thing about Midodrine is that it is what's called a 'forgiving' drug (unlike Florinef that hangs around in your system for awhile). In other words you take it and it does its thing and it's gone. It takes about 45 minutes to work, peaks for about 2.5 hours and then starts to fade. So if she took it at say 8am, she could certainly rest  (I would think) from 1100 - 100 and take it again at 1 and then 430 or 500 for example. I was told not to take it after 600. 

My understanding is that the biggest concern is supine hypertension during sleep ... I took this to mean during the night. If she is having symptoms of hypertension at nap or night I would definitely speak to the dr about switching to a two dose schedule. Sleep is most important!! Especially if she is not having low BP symptoms during sleep where she needs that bump in BP.

for me the Midodrine barely bumped my BP and hypertension was not going to be an issue - that's why I am not on it anymore. It wasn't effective enough. I make homemade salt capsules and drink tons of electrolyte drinks, use compression, avoid heat, etc etc etc ... My BP has been very resistant.

I wish you and your daughter all the best ?

Kaitlyn

[shan1212]

I think this is a lot of trial and error, and of course something to discuss with your doctor. Personally, I have taken Midodrine and lain down or napped afterwards when I was particularly symptomatic. Without the Midodrine, I would have been in full-out episode mode with vomiting, diarrhea, rapid dehydration and possibly needing to go to the ER. So the Midodrine saved me from that, but it wasn't like I was going to zip out and run 5 miles. I was still fatigued and needing rest. I just try to prop my head up as much as possible. I monitor my BP with a home monitor to make sure I'm not suffering hypertension from it (I wish, haha). 

ETA: But yes, normally I lie down when my last dose has worn off, and wait until I get up to take my next dose. It is short-acting, and as far as I know you do not see more benefits from taking it at exactly the same time every day. This was I can double up when needed, and space it out when needed.

[yogini]

Supine hypotension is a concern even when taking a nap or even when lying down awake, but you should be able to manage it by timing doses. Also, for many POTS patients the BP is low enough, that even with midodrine you do not have hypotension.  This is why I have sometimes slept with midodrine in my system or compression hose on -- and have seen others post about this.  But it's very individual - so pls check with your dr.

[fanelall]

I used to be on Midodrine and I know its odd but I would nap in a chair. If I was really tired I would nap in bed with my pillows propping me up the best I could. That way I would never have to miss a dose. I know when I was in that stage of my POTS I couldn't miss a dose. It HAD to be every 4 hours otherwise I wouldn't be able to stand up. So napping in a chair or more upright protected me a little bit from pressures getting too high.

Allison