PetuniasMom

My daughter started on 2.5mg of midodrine three times a day. It helped her to not be dizzy and stopped the near passing out by increasing her standing blood pressure - but that's all it did for her; her doctor suggested doubling it to see if it would help with other symptoms as well, I was concerned about increasing her blood pressure too high and he still wanted to try it, he said it may or may not increase it, and when we did increase the dosage it did not push her bp readings any higher. It also did not help any more than the 2.5mg, we don't think.

So as we bump along waiting for her autonomic testing appointment, I have a few questions not for the doctors, but for you all... 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS. 2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS? 3. Does your heart rate increase when you eat? By alot? 4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL 5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep? 6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process?? 8. Tachycardia - how high is too high? *sigh* I think thats it. I hope its okay to put my questions out like that. I know they are questions for the doctor doing her testing, but I just need to get my head around a few things and be organized before that appointment. Thank you all for any answers...

I want to say thank you to each of you that answered my post. What an amazing group of people, tooer such an outpouring o support and information to a total stranger. I think i was overwhelmed when I read all of the replies, and truly didn't know what to say other than thank you...I needed to hear all of it. And I'm off to start another post with some questions....

Not too sure how to ask what is on my mind... we are now on the right track as far as medical appointments and a referral to an autonomic clinic. Until then, my daughter is in the care of an awesome cardiologist, I feel fortunate, and looked after to the best of his ability. The problem I am having tonight, is dealing with it all. How do I tell my daughter that there is no magic pill... that she may not go back to school in September....that she may feel this way for a very long time. I think she is expecting that this referral to the clinic will be a "finally" for her - "finally, someone who knows how to fix me..." But, that isnt the case, is it. I know that we can manage symptoms to the point of feeling much better, with the right medication and the assistance of the proper doctors. I guess I am just tonight reeling from the fact that my high-achieving, intelligent, athletic, got-the-world-by-the-tail daughter who very badly wants her life back, may not have her life-as-she-knew-it back ever. She may not be able to have a summer job, even next year...and what about her dream of going to University, she is struggling in a way she has never struggled before with brain fog issues, let alone the fact that she can't go to school right now, and will she even be well enough to leave home for further education? Is she disabled? Her quality of life has changed so drastically - how do I tell her, and help her deal with the loss...when we see all the things her friends are doing, and what they accomplish in a day, or where they go in a day compared to what my daughter is able to manage - we are happy if she has a shower and completes an hour of schoolwork in between Gatorades and blood pressure medication I am so sad for her, and I don't know what to do. I am trying to stay positive, because I know she will take her cues from me, but man, sometimes it is just so hard.

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

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.

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...

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.

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.

I noticed your post was at the end of March, and I was wondering if you would mind if I ask how your son is doing now, and if the larger doses of Midodrine is still controlling the tummy pain? My daughter is in constant pain that increases and decreases but never goes away, as well as feeling nauseous 24/7. We are waiting months probably for our first consult with an autonomic clinic, and I am just looking for anything that might help....

Wow...I cannot believe the level of support and encouragement I have received with just this one post. Each and every one of you has said something that has helped me, I want to print this thread and read it over and over today! Thank you so much. I did look up Dr. Morilo, and will definitely ask to be referred to him as well. And yes, from everything I am reading I see that the 8 hour drive to Cleveland would be worth it, and I will make some calls on Monday. I will be ever thankful to the paediatric GI specialist in Kingston that first checked her postural vitals. There is so much information you all have given me in your replies that I want to digest and reply to - the timing of symptoms, hers are very bad from the time she wakes up until about 1pm and then sort of manageable from there until about 5pm, and then downhill to unbelieveably awful starting around 9pm ~ and the morning was worse when she was getting up and having a hot shower to try to get her day going. I am off to read, read, read some more, and may reply to some of you personally if nobody minds? And again, thank you for taking the time to answer me, I feel much, much better today, and hopeful that someday my daughter will have her life back.

I'm wondering if maybe I have this all wrong. To keep a long story short, a paediatric abdo-enterologist had determined that my daughters symptoms were not GI related,and sent her for a tilt table test, based on his assessment of her entire condition. The wait for that test was 9 months. She was instead seen by a cardiologist who felt that the tilt table test was not neccessary, and based on her postural vitals determined that she had an autonomic dysfunction. Her heart rate is up at least 30 beats per minute when she stands up from laying down, and her blood pressure is low, and does not make a big jump when she stands up...among other funny things. He described the symathetic vs parasympathetic nervous system to us, and said he was referring her to the autonomic clinic. He prescribed midodrine, and we are to be in touch weekly to see how the dosage is working. The GI doctor who initially made the suggestion of the tilt table test said he was not surprised by the diagnosis of an autonomic dysfunction, and said he had nothing to offer us as far as her tummy symptoms other than a referral the the Cleveland University Autonomic Testing Center. (we are 8 hours from Cleveland, and in Canada....he was offering that as opposed to wait times here.) The GI doctor has been great and the cardiologist was helpful... Appointment today to see her family doctor and let him know about what the 2 specialists had to say, and he was "on the fence" with the diagnosis and would be very surprised if what she had was a "true dysautonomia", and that low blood pressure was common with teenage girls. So I guess my questions are, what is a "true dysautonomia"? What is the difference between POTS and Dysautonomia? Could she have an autonomic system mess up as far as her digestive system and her heart, and not have POTS or dysautonomia? Was I wrong in my understanding of what the Cardiologist told me? He said "call it what you want, but her autonomic system is not functioning correctly". Is that different than Dysautonomia? I was very discouraged after the appointment, and I really felt like he thought I was crazy or something. ...am I? Thank you for listening...