Does anyone else have problems with Midodrine?

[molly0]

My 19 year old daughter has severe dysautonomia.  She is taking Midodrine, Florinef, Ritalin, and daily hydration therapy through her PICC line.  Despite her treatment, she is still ill quite often.

She is a smart, and very artistic young lady.  She rarely complains, but I worry about her becoming depressed.  She barely made it through high school, but I know she wants to go to college.  She is also on social security because her illness prevents her from working.

She has been doing better since we started on the Midodrine, but faints almost immediately as it's wearing off.  Does anyone else have that problem with Midodrine?

[molly0]

halbashes:
I mentioned the idea of taking college courses over the Internet to my daughter, and she is beyond excited!  Thank you so much for the great idea!

As for the IV hydration therapy, Julie has been using a PICC for the past two years.  She starts up her IV every morning while she takes her medication, and we no longer have to worry about her not being able to keep her medication down.  It was that simple!

dolfnlvr:
Julie's heart rhythm remains normal during her episodes, but her heart rate does not.  She has episodes of Inappropriate Sinus Tachycardia, and Sinus Bradycardia.  We would like her to have a pacemaker (our son has one), but her doctors don't believe it's necessary in her case.

I've never heard of Norspace, but I will bring it up to her specialist at our next appointment.  Thank you for the link.

[dolfnlvr]

Can I assume that these two cases of dysautonomia are not directly linked to cardiac symptoms?  The reason I ask is because one of the things that happens to me when my vagal nerve decides to act up is that my heart rate drops DRAMATICALLY which bottoms out my BP which causes my faint.  This is why I was originally put on Norpace...to correct the heart rhythm effects.  Had that not worked, they had suggested that I consider a pacemaker.  This was intended to keep my heart rate from dropping far enough to pass out.  Is this no longer an option?  Or...was this discounted.  

You have to understand.  I was in on the first clinical trials of the tilt table testing for this disorder.  Many of the treatments that were offered then have changed, and thankfully I am not in the same life disrupting situation as the two of you experience.  Therefore, I have not been as clear on the advancement of treatment.  There is a website from the UK that addresses these issues and has several links you may want to visit as well.  Here it is....http://www.syncope.co.uk/

[halbashes]

I also have dysautonomia, and have had similar issues with Midodrine treatment in the past.  It works very well while it's working, but wears off much too quickly to be predictable.  Between that and unpleasant side effects, I ultimately decided to discontinue the Midodrine.

It's unfortunate, but severe cases of Autonomic Dysfunction always seem to baffle the doctors.  I try to keep up-to-date on new studies and treatment ideas.  Like your daughter, I receive SSI because I am unable to work.  Although I am trying to move beyond that with the help of local vocational services.

Has your daughter ever tried Internet based education?  I took both high school and college classes over the Internet.  It may not be a real classroom, but it's definitely a good option for students with chronic illnesses.

If I may ask, how is the IV hydration therapy working out for your daughter?  I've been considering it for myself lately, but I'm still not entirely sure about it.