What is your treatment? How well controlled are your symptoms?

[molly0]

My daughter Julie's dysautonomia is being treated with Midodrine, Florinef, Ritalin, and IV hydration therapy through her PICC.  Her symptoms become dramatically worse every evening as her Midodrine wears off.

My dysautonomia is closer to a mild POTS, and is well controlled with Florinef.  My faints are down to about 2x per year, with only mild symptoms in between.

What is everyone else being treated with?

[Leng]

I take Midodrine 4x daily.

[Leng]

I have Neurocardiogenic Syncope.

[Kestra]

I have mild autonomic dysfunction (Hyperadrenergic Sensitivity/Inappropriate Sinus Tachycardia) associated with my CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia).

I can't take Midodrine or Florinef due to my arrhythmia, but my symptoms are somewhat well controlled with Sectral.

[dolfnlvr]

My dysautonomia is diagnosed as vasovagal syndrome (aka neurocardiogenic syncope).  When on the tilt table it took <11 minutes for me to pass out and my heart rate plummeted to 11 beats/min.  This was in 1993 or 4.  The doctor prescribed a small dose of Norpace aka dysopyramide to regulate my heart rhythm and prevent the bradycardia.  This succeeded in preventing fainting spells.  Thank goodness, because their next step was going to be a pacemaker (at 19 this sounded like a death sentence).

After about a year, I stopped taking the Norpace.  There was a lot of talk about the dangers associated with the drug, and since I was told that the syncope was benign (as long as I didn't smack my head on the way down) I thought that the tradeoff might be too much.  

Later in life I was diagnosed with PVC's and SVT.  I was given a small dose of Prozac and Metoprolol to depress the sensations and it seems to work.  Unfortunately, the beta blocker lowers my BP and Heart Rate and therefore make me more prone to fainting then I have been for years.  

All in all my situation has improved as the years have progressed.  I was able to carry and have children naturally and I usually faint due to stress, trauma or after the adrenaline rush of some sort of "event" like one that would require me to carry out first aid, etc.  When my kids get hurt I take very good care of them...then I pass out :-).

Have a good day all..

[halbashes]

I've tried many different medication cocktails over the years.  My current treatment includes: Toprol XL, Theophylline, Ritalin, Prozac, and supplemental oxygen.

This treatment has reduced my fainting episodes from about 4x per week, to more like 2x per month.  I still have some symptoms in between times, but with the fainting under better control my life is feeling much more predictable.

[molly0]

How do you deal with the falloff effect of the Midodrine?

[molly0]

I guess I'm lucky, my POTS never esculated to the point of needing a pacemaker.  I'm easily controlled by the Florinef, and a high salt diet.  I used to take Atenolol in combination with Florinef, but I don't even need the Atenolol anymore.

My daughter hasn't been so lucky.  A pacemaker has been brought up to her about a half dozen times, but she wants no part of it.  The cardiologist suggested that she have an implantable loop recorder first to be sure she needed the pacemaker, but she wouldn't agree to that either.

Two years ago she finally agreed to a PICC line.  The hydration therapy has made her symptoms much more manageable, but I am sure the pacemaker will come up again at some point.  What are the dangers of Norpace?  Is it a good alternative to a pacemaker?

[molly0]

Your dysautonomia sounds a lot like my daughter Julie's.  Do you have seizures or nausea with your episodes?

[dolfnlvr]

For information about disopyramide see the following link.  http://www.rxlist.com/cgi/generic/disopyr_ad.htm

I had to be hospitalized for the first 3 days of treatment to make sure that none of the serious side effects would occur without immediate assistance.  Honestly, I had NO IDEA how serious it was when I was going through it.

[Leslie613]

When I was first diagnosed they just recommended a lot of salt for my neurocardiogenic syncope and IST.  Then that wasn't really working so they tried Florinef, but it made me feel AWFUL, so I just went onto Atenolol to slow down my heart and to try to prevent the PAC's I occasionally have.  Once I got to college the stress of everything made the syncope a lot worse.  I never actually pass out, but the sensations I get when the blood starts to pool (pulse irregularities, palpitations, lightheadedness, weird chest sensations) makes me freak out, and the adrenaline rush turns into a panic attack.  I was constantly weak and fatigued, waking up in the morning meant instant tachycardia, and my sleep was being disturbed from the anxiety so I told my doctors that I wanted to try an SSRI.  So now I take a low dose of Prozac along with the atenolol and now I'm doing much better.

[halbashes]

Yes, I have both fainting and nausea/vomiting.  After fainting episodes, I occasionally have seizures/seizure-like activity.  Prior to my Neurocardiogenic Syncope diagnosis, I was treated with anti-seizure medication.  Since my seizures only occur in response to dysautonomia, the anti-seizure medication was basically useless.

[Leng]

I used to take Midodrine only 3x daily.  Now I take 4x daily.  My Midodrine wears off at bed time, so I just go to bed.

[mandymoo]

Hi!  I have POTS and Neurally Mediated Hypotension.  I'm taking Florinef, Lyrica, Norpace, Prozac, Ritalin, and hydration through my PICC.  I've had dysautonomia symptoms for the past 13 years.  My symptom control has varied over the years, but I've recently gone 4 months without a fainting episode.  While I've been doing pretty well, I'm still not able to work.  I get tired very easily, and struggle with my independence.