side effects midodrine

[iamom]

My 14 year old daughter was diagnosed with POTS in January, 2010 and began taking metoprolol as well as increased electrolyte based fluids and salt.  In addition she maintained 30 minutes of aerobic exercise 5-7 days a week most weeks since diagnosis.  In July, 2010, despite compliance to treatment, she was not improving as we expected and we began to be concerned about her ability to start school and extracurricular activities.  She started midodrine in July, 2010 beginning with 2.5 mg dose three times a day progressing to 7.5 mg three times a day until  early August.  After a few days of midodrine she began to have periodic twitching, jerking movements like motor tics.

We discontinued the midodrine in early August for 10 days because of concern about the motor issues. The twitching movements disappeared and initially her POTS symptoms were not increased.  However, her POTS symptoms
worsened after approximately 10 days and we re-started midodrine again beginning with 2.5 mg three times a day.
The motor tic movements (twitches) have once again appeared.

Has anyone else experienced twitchy/jerky movements with midodrine?
Thanks for any thoughts you might share!

[iamom]

A tardy thank you for your reply.   I know Midodrine is very helpful to many folks with POTS.  We recently contacted the FDA to make sure it stays available for all those that it helps.  

Unfortunately, my daughter continued to have what appeared to be a bad reaction to the medication and we discontinued it under her doctor's direction.  She is doing better now.

We appreciate this forum and the willingness of others to share their experience.    

[globalhiking]

Hi there,

I'm not sure I can be of much help, beside saying that usually Midodrine does not cause muscle twitching or tics.
This is a link to a list of side effects -

http://www.rxlist.com/proamatine-drug.htm

Does your daughter take other meds? Some drugs, like Florinef, can cause low Potassium that can in turn cause twitching and spasms.

Have you talked to your doctor?

Sorry if I'm not of much help.

BTW- It is great that your daughter is able to exercise on a regular basis. It might not cure her POTS, but at least it prevent any worsening from inactivity.
There are a few mums on this forum with POTSy children. Hopefully they will see your post and chime in :-)

Good luck and keep us posted

:-)