Blood Pressure & Midodrine

[PetuniasMom]

My 14 year old daughter has been taking 2.5mg of Midodrine 3 times a day for 10 days now. We have no official diagnosis other than "autonomic dysfunction", and are waiting for a referrral to a specialist. She has other symptoms, and her GI doctor is also certain that her tummy problems are autonomic. So to make a long story short, this morning I am not sure whether to give her her Midodrine. Usually she takes her pill half an hour or so before she gets out of bed. Today she wandered out to see me, not feeling good and just a little dizzy. She sat down and we did her bp - 120/68 & hr was 105. Waited 15 minutes, and made her stand up for 4 minutes. (That did not make her happy- feels awful when she stands, but not dizzy or lightheaded at the moment). I could not get a bp on her left arm, so using her right arm, it was 128/79 & 85 hr. She is grumpy and not cooperative today, so I can't do it again, and will try after her shower.

My question I guess is do I give her the midodrine? I don't seem to need to increase her standing bp right now...and if I do, she will be running high...right? Or am I confused about how midodrine works? I don't think midodrine has a cumulative effect, is that right? I know 105 is a high heart rate for just standing up and looking out the window. I wonder what would have happened if I made her stand for 4 more minutes, would her bp have dropped like it used to? Does she have to have constant, consistent symptoms for a diagnosis of dysautonomia or POTS? What if she is having a "good day" on the day she goes for her autonomic testing?

Also, she started metoclopramide yesterday - only 2 doses, 1 at lunch and 1 at supper - with no change in symptoms at all.

I swear, I am so confused.

[mwise]

Hi PetuniasMom,

I am a nurse for 30+ years and have Orthostatic Hypotension Dysautonomia-Autonomic Neuropathy. I was diagnosed from having an abnormal Tilt Table Test and QSART Test along with some abnormal labs. I am taking both Midodrine 5mg 3xday & Mestinon 60mg 3xday. I take the Midodrine in-between the Mestinon. I take it 7am-12pm-5pm and adjust the times based upon what I am doing for the day. If I know I am going to be out later in the evening, I may take them later & spread the dosage time farther apart.

You should always take the blood pressure in the same arm & same time daily. Blood pressure can vary with activity such as walking, time of day, which arm is used, eating, drinking, etc...I would recommend you give her the medication as prescribed. Midodrine does not stay in the system. It usually peaks in 2-21/2 hours. That is when I get the side effects itchy head, urinary frequency, goose bumps & skin crawling. The benefits of being able to walk and do activities out way the side effects.

Hope this helps

[bruc]

If you dont have a blood pressure problem will midodrine still help with dysautonomia symptoms?

[Sarah4444]

My symptoms do not always correlate with my blood pressure. My bp can be normal but I'll still feel awful. I take my doses of midodrine at regular intervals, not based on bp measurements, but do random checks once in a while just see make sure I'm not hypertensive. Often when I feel bad I will have the distinct postural tachycardia without any substantial bp change, other times by bp goes up when I stand, other times it goes down...it's too complicated to try to match the med dose to such unpredictable observations.

[mwise]

Bruc & Sarah,

Midodrine is used in patients which have symptoms of low blood pressure when standing and in people whose daily activities are severely affected by Dysautonomia even after other treatments are used (e.g. support stockings, salt loading, increasing fluid intake). It acts on the blood vessels to raise blood pressure. For me being able to walk and do simple activities of daily living (e.g. brushing teeth, combing hair, washing face at sink) again is what Midodrine and Mestinon has done for me. Like I shared in a previous post, the benefits out way the side effects. I have read many posts that some individuals can't tolerate Midodrine, Mestinon or even Florinef, or use them alone or in combination and some no medications and do other treatments such as supplements, therapy, etc...It has been trial & error for me. I do the medications along with other treatment modalities and supplements. Thanks to this great group of knowledgeable & loving persons,

I have found some normalcy in life.

[PetuniasMom]

Thank you...Sarah, thats the way things seem to be going here, with symptoms not always correlating to blood pressure...which I guess I was surprised to see, for some reason. And she is still experiencing the postural tachycardia, although not to the same degree as before, and it does vary. And, she still feels better laying down... So, thank you for your post - I was happy to see someone describe what I couldn't put into words.

mwise, thank you for your input too, your experience and knowledge is very valuable! I do understand midodrine and how it works then, and it was a blessing when she first started taking it as the dizziness and the lightheadedness were interefering with her daily activities as well. My question then would be, her bp today right now is 126/80, standing up, not doing any activity etc. Her heart rate is 105. So, she is due for her midodrine now. Question is, she does not seem to be experiencing the drop in bp today.... so, do I still give it to her? It will increase her bp, right? I haven't given it to her today, and I do know that I should follow medication instructions exactly. But I am just a bit worried. I dont want to put her in a state where her bp is too high... but, maybe giving her the midodrine would lower her heart rate, because her bp would increase?

Sorry for being so confusing. I just wish I could do the right thing, and make my daughter feel better once and for all.

[mwise]

Hi PetuniasMom,

Midodrine is excreted from the body through urine. By the time you give the next dose, the previous dose is most likely out of the body. I would recommend to give her the medication as prescribed the 2.5mg as the next dose of Midodrine will keep the blood pressure in the 120s/80s. I am believing the medication is holding her blood pressure at a normal rate which is a good thing. If you are not sure you are comfortable giving her the full dose than does the 2.5mg have a line on it?

You could cut the dose in half to 1.25mg. I have 2.5mg tablets (I am on 5mg and take 2 tablets 3xday) with line on them. They can be cut in half which would take them down to 1.25mg.

[PetuniasMom]

Yes, I understand that the midodrine does not remain in the body, and has a peak time, and that if taken on a regular schedule it would keep her bp at a good level...however, my questions today came from the fact that she did not take any midodrine at all today...

[mwise]

Hi PetuniasMom,

I am going to throw out a few other things-you did say she was grumpy and not cooperative-was she just not feeling her normal self? She could have or be coming down with a virus that could cause her blood pressure to run normal. There are so many variables out there that can affect the blood pressure whether being meds, activity, eating, drinking, etc...My only suggestion would be to monitor her blood pressure daily with same arm and same time of day. Make sure she is resting for a least 15 minutes before you take it, than have her stand for 3 minutes to see what it is. I believe you should take it lying, sitting than standing for 3 minutes without the Midodrine. If it is staying in the 100s+/70s+ than she may not need to be taking Midodrine unless she is truly symptomatic. I would share these findings with her physician and see what he/she has to say about it.

How wonderful if your daughter could be off Midodrine.

[ramakentesh]

blood pressure measurements are pretty much irrelevant in terms of how a POTS patient feels.

[icesktr189]

I used to not take my midodrine because my bp would sometimes go up to 140/90. It didnt always do it, but somedays it would. My cardiologist told me that she would rather me have a slightly higher bp than be in bed all day long. When you are constantly inactive, it actually takes years off your life. If you daughter is feeling good without it one day, then dont give it to her. But if she feels dizzy and lightheaded, give her the dose. You want to occasionally monitor how high it goes, but the stroke range isnt until you hit 200/100 or something close like that.

Dont get too caught up in monitoring bp's because unless you have a fairly decent one, its not always accurate. Also, I find that if my blood pressure has dropped really low, it will sky rocket right after from my tachycardia and adrenaline surges.

Just go with how she feels, and not so much her blood pressure reading. I have had normal readings before, but not enough blood flow to my brain so I was still very dizzy and lightheaded. The midodrine really helped me with that. Also 2.5 mg is a pretty small dose. The highest is 10 mg. Good luck I know how much of a pain in the butt it is trying to work through meds!

[ramakentesh]

Blood pressure would be meaningful if it was the same in all parts of the body in POTS.

In POTS there can be vasoconstriction or vasodilation in various areas of the body. You can have peripheral vasoconstriction and even overall hypertension and still have reduced blood flow to the brain and effectively symptoms of hypotension.

[kclynn]

Petunias mom, I wonder how your daughter is doing? We started Midodrine at 10 mg 4x a day. Seemed to be working, then a couple bad weeks, then steady improvement to where my son is doing better. Long way to go, but he is up everyday and functional for a little to a lot of the day, much more than he was. The on call Cardiologist we called the first week said he should have had a more immediate response but I think that was not right. It took time for him and our experience is good.

I would say stay with the midodrine. We did also start florinef at the same time. Our experience is that effectiveness of everything with POTS is judged over time, not day to day (unless there was some truly serious side effect). Also, for my son, everthing is delayed. So if my son got up grumpy and irratible then maybe it was because he over did the day before. This is getting clearer for us to decipher though since his symptoms are much more stable over all. During the winter when he couldn't even stand up or think and had constant seizures there was never any time we could say we did X and it resulted in Y.

[PetuniasMom]

Ramakentesh - thank you. I needed to hear what you had to say about blood pressure. I have been struggling for a week, wondering yet again if we are on the right path to getting my daughter well, due to the fact that her blood pressure is not only low, but sometimes high, and the fact that her symptoms do not always seem to corrospond with her blood pressure...which sarah4 helped me to understand as well. What a great resource you all are.

KCMom, thank you for asking me how my daughter is doing. Those words brought tears to my eyes.

Lets see...the midodrine, I wasnt sure what to do because while it seems to hold off the dizzy and lightheadedness, I have been concerned lately because sometimes her blood pressure is high, or higher than it should be when she is due for her next dose, ie 126/80 - do I give her the pill? And then, sometimes I wonder what would it do if we bumped up to 5mg of midodrine - would it help with sending blood to her digestive system and/or her brain? Or would it just put her blood pressure higher at the high times - does that question make sense?

Dani, that is what we are going through... I am trying to understand how the medication affects her day, and while it gets her up and around, she isnt always dizzy or lightheaded without it ~ does that make sense?

And then when I think about it, yes, like your son, she has been functioning too for anywhere from a little to a lot of the day. And I guess i struggle with that too...I am constantly 'at' her - how do you feel, does your head hurt, is your tummy sore...what do you mean you "dont feel good", explain, put it into words for me, use a scale of 1 to 10....and she tries to answer me, but her head hurts all the time on varying degreees, and her tummy pain is so bad sometimes it puts her to bed, yet she is still eating and drinking normally because nothing really makes it better or worse. When she is having a bad day, or a bad time through the day, I can see it aallll over her face, and in her body language, and hear it in her voice. I go for the blood pressure machine, and - normal readings. Which I guess in my mind means I can't figure the reason for her feeling so awful, which in the end means I cannot make her feel better.

On top of that, life moves on...there is 3 weeks left of school before exams, and we are starting some home support this week so she can maybe turn in enough school work so she can get her credits and have the stress of that lifted. Her friends, while most of them have stayed in contact, have moved forward - summer jobs, outings, etc that she simply isnt able to participate in. She was determined she was going to play baseball this year, but 20 minutes on the field (tried twice), brought on exercise intolerance symptoms. So that experience drained her physically, and emotionally as well.

We are waiting for our referral this week, which has been made to a neurology department; who knows what the wait time will be...and if they cannot help her, I will have to ask for a referral to a clinic in Hamilton, and then depending on the wait time, I will have to make the decision to go to Cleveland.

Anyways sorry to all for the ramble, so much is going on in my mind with her symptoms and trying to figure out what to do, and nobody really understands. Nice to vent for a few minutes this morning. I have a huge appreciation for this board.

[PetuniasMom]

blood pressure measurements are pretty much irrelevant in terms of how a POTS patient feels.

Thank you!! I needed to hear those exact words, just like that.

[kjd111]

I will second the blood pressure measurement not always correlating with how they feel comment. I remember many visits to our endo last year as we were sorting things out, where he would do the blood pressure lying, sitting and standing and there really wasn't too much drop compared to where my daughter had been before as he had started her on a whole host of things to keep it up. BUT, she was really struggling - thus the reason we were there. We just had a 'checkup' type visit where her blood pressure definitely dropped again on standing, which it hasn't done in a while (i think to 80/60) but she's had a couple week run here where she's been ok - for her.

My daughter is also on midodrine and my advice to you, unless your daughter has really bad reactions to it, is to stick it out if you can. The trick is to try to be consistent with the meds, so her body can try to adjust.

[yogini]

blood pressure measurements are pretty much irrelevant in terms of how a POTS patient feels.

That's not correct - it's a lot more complicated. The hard part about our treatment is that our vital signs (HR and BP) might look "normal" even though we are feeling horrible.

HR and BP are an important indication of how we're feeling and how to treat ourselves. When my BP is low, I salt load and put on compression hose and feel a lot better. This treatment works when my HR is high and my BP is normal. That's because in some people with POTS, even if your BP is normal, it helps to take BP boosting meds. If your heart is beating too fast to maintain a normal BP, taking midodrine or florinef can take the burden off the heart and lower your HR.

I think, the question is whether the midodrine is helping - are her overall symptoms better when she is taking it? You can also consider other meds, such as beta blockers, if you don't think the midodrine is helping. I guess you will have more info when you see a specialist. Hang in there the meanwhile!

Edited May 23, 2011 by yogini