Hyperadrenergic Dysautonomia

[JennieHJO]

I was diagnosed with dysautonomia about 25 years ago, and am seeking a newer, different treatment than the one that was prescribed 25 yrs ago. 

I have a rare type: Hyperadrenergic Dyautonomia. This means that my body releases too much adrenaline all during the day and night. Supposedly, only 10% of us have this kind, and it’s the hardest kind to treat. 
 

If anyone has any information that might help me, I’d really appreciate your sharing. 

[Pistol]

Hello @JennieHJO! I also have hyperadrenergic POTS, it runs in 3 generations of females in my family.  became extremely symptomatic in 2009 and disabled in 2013. I have been successfully treated by my autonomic specialist and cardiologist as well as my PCP. What has helped me medication wise are Carvelidol ( beta blocker, for tachycardia and PVC's ), Diltiazem ( calcium channel blocker, dilates blood vessels and therefore preventing many adrenaline related symptoms ), Ritalin for brain fog, Escitalopram ( Lexapro ) to help balance neurotransmitters and - most importantly - IV fluids twice a week. Since I am refractory to most treatments as well as highly sensitive to meds, and my body does not retain fluid taken in by mouth, the IV fluids have made the greatest difference in the treatment of my symptoms. My two sisters also get IV fluids as treatment. 

I tried Clonidine, Pyridostigmine, several beta blockers, Amlodipine, Guanfacine and Midodrine - none of them were effective. What I am taking now is helping. I no longer take seizures or pass out from the excessive vasoconstriction caused by the high adrenaline levels, so I am improved, but I am severely limited in what I can do on a daily basis. 

Here is an article on hyperadrenergic POTS from our Information Resource site: