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Scotty81

Has anyone tried midodrine and got fatigued?

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My daughter has POTS, and she tried Florinef, but it gave her terrible insomnia. She has recently tried midodrine (2.5 mg, 3 times/day), but it is causing her excessive sleepiness throughout the day. She was tired prior to starting the midodrine, but with it, her fatigue has gotten worse and her energy level has plummeted. She actually started with half of a 2.5 mg tablet to minimize any potential side effects, since she has been sensitive to some medications in the past. But, she still had the excessive sleepiness on the lower dose. Some have said that this drug ends up producing oxytocin, which ends up producing these unwanted side effects.

Has anyone also had these symptoms? Without actually giving medical advice, is there anything that anyone has done to successfully reduce these side effects? I have read that some people don't think this is a known side effect of midodrine, but I have also seen other forums where people have noted this effect.  Also, if you couldn’t tolerate midodrine for any reason, can you share what medications have worked for you?  We are aware that beta blockers may also be used, but her doctor said that they would not be appropriate since her HR is not typically in the 140-170 bpm range, and during her tilt table test it only reached 120 bpm. Also, she has low blood pressure (80's to 90's over 50's to 60's), some tachycardia and during her tilt table test, her blood pressure remained constant but her heart rate increases.  I realize that all POTS patients are different, so what works for one person might not work for another. But, I’m hoping to at least understand what other people's experience has been.  

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I am on Midodrine, which I haven't experienced any fatigue. I am on a pretty aggressive dose d/t poor Orthostatic Hypotension Dysautonomia (OHD). I also take Florinef and Mestinon. I also do a lot of homeopathic remedies. I found Vitamin B helps combat fatigue for me. It is very true what works for one person may not work for another. It has been trial and error to find the right combination to control the symptoms. I worked with my Neurologist at Cleveland Clinic, GI specialist, Dietician, Endocrinologist and a good homeopathic health specialist over the course of 6 years and continue to do so. It is definitely a work in progress. Good luck.

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So sorry that your daughter is suffering!  I have daughters, also, and we are still figuring out what works, what doesn't and how their bp/hr responds to things.  Just brainstorming out loud, but has your daughter, by chance, tried the Florinef and the Midodrine together.  One medication might react one way by itself, but differently if put with another (a pediatric anesthesiologist told me that one time).  My oldest has trouble with very low bp and high hr.  Her neurologist just put her on propanolol (a beta blocker) to bring her heart rate down, so we have had to adjust her Florinef to balance the two, also trying to settle her sympathetic response.  Still working on that...  Her hr runs about 105 sitting down, but when she stands up, it jumps to about 130.  He's one of the country's best autonomic neurologists and he said that having a resting hr of 105 was too high.  Makes the heart work to hard to get the blood where it needs to go.  My point being, your daughter's hr doesn't have to be sky high to benefit from treatment.  That's probably why she's so tired,  I'm sure that's why my daughter is so tired.  Her body is working so hard. 

She tried midodrine a couple of months ago and it helped get her up and around in the morning, but she had to stop it because it was increasing her migraines too much.  It didn't make her sleepy, actually had the more normal affect of giving her some energy.  But, that doesn't help if you have a migraine every time you turn around. 

I hope your daughter finds some relief soon.  As always, keep well hyrdrated, lots of electrolyte water, salt... I'm sure you know the drill. :unsure:

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