And Another Midodrine Question :)

[kclynn]

My son is on Midodrine for a couple weeks now. It is helping some (not as much as I wish but that is another post). Sure can tell when it is almost time for another dose.

Dose the Midodrine have an cumulative effect or is it strickly dose to dose. And if you can't get out of bed in time for your first dose do you just adjust your doses that day? I know he shouldn't take it later than 6 and is supposed to take 4 doses. Would it hurt if he got up late to only take 3 that day.

This morning he is in bed with nausea from pushing too hard the lat couple days. I know he shouldn't lay down when taking the medicine so what to do?

[Christy_D]

We just skip doses when my son is to sick to get up. The doctor said only give it to him if he is upright, so somedays that wasn't even possible for any doses. After giving him a dose one day, he decided he needed to lay down and he got chest pains. So when I give it to him I ask if he is going to be remaining upright.

[Sarah4444]

I am unable to remain upright all day without lying down to rest and get blood back in my head on and off throughout the day, and some days I feel quite unwell and have to lie down quite a bit. I take the midodrine at regular intervals and check my blood pressure once in a while. I haven't seen any evidence of supine hypertension yet, and without it, it's harder on me when I do manage to get up and move around. When doctors say not to lie down, I'm not sure they really appreciate the realities of having POTS.

[mwise]

I take Midodrine 5mg 3xday spacing it between 4-5 hours apart with Mestinon 60mg 3xday in between. I have taken Midodrine at later times even after 6pm if I know I am going to be up late or out at a movie to help sustain me upright. I know when Midodrine is peaking about 21/2hours in to the dose with itchy head, goose bumps, skin crawling and urinary frequency. I also know when it is wearing off and have never experienced any cumulative effects. I take it even if I am lying down, but awake. I didn't see any difference and still have the same side effects.

Without Midodrine, I could hardly walk and did very little activities when just on Mestinon. I pretty much stayed at home and was couch bound. When Midodrine was added, I began to be able to walk longer distances without a rollator walker or a wheelchair, started to do more little chores around the house, actually grocery shop (pick down times at stores) and returned to work. I do have a desk job, but have to walk some distance to restrooms and other areas in the office.

I do salt load through out the day and wear support stockings along with taking vitamins and supplements.

I would do what ever works best for your son. Good luck.

[Godsgal]

I take mine 3 times a day and if I start the day late, I usually don't take the last one. I don't lay down on this. I did try to sleep once sitting up and my heart did the craziest things! Never again will I do that!

[Rachel]

Midodrine doesn't have a cumulative effect. It is short acting, and is pretty well out of your system after 4 hours. It won't hurt to push doses to later on in the day based on when your son gets up.

I take my midodrine when I wake up. I then take it every 3 1/2 - 4 hours until I go to bed. I go to bed at 8pm, but don't fall asleep until after midnight. Even though I'm in bed, I usually do take an evening dose that will wear off around 10 or 11pm. I need the midodrine even if I just have my head and shoulders propped up in bed.

Midodrine doesn't cause an increase in supine blood pressure for everyone. You can have your son lie down after he has taken midodrine and check his blood pressure to see if it causes a problem for him or not.

Rachel

[kclynn]

I don't take his BP anymore because he has a hypersensitive pain reaction to BP cuff. I will take it if I truly think some symptom would require that I know. His arm turns bright red and the pain and tingling are intense.

Anyway, he did complain of pressure in his chest when he tried to lay down after he started taking it a couple weeks ago. Otherwise, I don't know if it is problem for him.