Is everyone with Hyper POTS on Clonidine?

[jamesldavis1]

And has it basically been a game changer for all of you?

 

How many of you have symptoms even while laying down, not the tachycardia, but chest pressure, migraine, or other.

[Lily]

Clonidine has knocked my sympathetic nervous system down to a comfortable level.  I do not feel nervous for no good reason, my heart rate and blood pressure are down, and I no longer have to pee every time I stand up.  Very nice.  Clonidine can't fix blood pooling, of course, but it makes a big difference to the sympathetic nervous system .

[SarahA33]

To answer your topic question, I'm not sure if all Hyper pots patients take clonidine. Medical Management and Rx's varies from person to person. There is a lot of literature on this site about "One size doesn't fit all" in relation to medication, etc. 

But, for myself, Clonidine has been a life saver for me. It has controlled my flushing, tremors, lowered my BP, made a small dent in my HR, helps me sleep again. I mentioned in another post that clonidine is similar to methyldopa, which are both in the same class, used for hyper patients typically.

Hi Lily! I found this article interesting about Clonidine and BV. http://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/clonidine-kataprex-nexiclone-duriclone/

I'd like more information, especially since one of my dr.s conferred with that entry! He did say from what he was aware, it was smaller levels contributing to expand in BV.. Have you ever heard of that?

[yogini]

Some people disagree, but Vanderbilt, one of the leading Dysautonomia centers, says the classification (hyper or not) doesn't matter so much for your treatment. No two people are alike and your doctor can figure out what's best for you based on your symptoms. 

I am not sure clonidine is prescribed as often as drugs like beta blockers, midorone, Florinef or SSRIs. 

https://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008

Edited September 12, 2016 by yogini

[Lily]

I didn't know Clonidine increases blood volume.  Interesting.  I was in initially prescribed Atenolol, which helped POTS a great deal but made me depressed.  No-motivation-depressed, not sad-depressed.  Next up was Methyldopa, which helped my ADHD (motivation! Yay!) but not POTS.  Clonidine helps my POTS but not ADHD.  I recently added Wellbutrin for ADHD, and I have motivation back.  Interestingly I am also a bit more relaxed mentally and less prone to thinking about work repeatedly.

[SarahA33]

Hi, Yogini, I'm perplexed by this, as a lot of others are also I think. I've had my diagnosis listed 2 ways: POTS w/  a hyperadrenergic component and Hyperadrenergic POTS.  This paper was published by Raj in 2015. (Satish R. Raj - Autonomic Dysfunction Center Vanderbilt University School of Medicine, Department of Medicine Vanderbilt University School of Medicine, Department of Pharmacology Vanderbilt University School of Medicine, Department of Cardiac Sciences, Libin Cardiovascular Institute of Alberta University of Calgary) as well as some of the other Vandy researchers. In this paper he clearly lists the various components and even that some overlap under "Pathophysiology of POTS, adding a section w/ a description for Naturopathic POTS, Hypovolemia and the Renin-Angiotensin-Aldosterone System in POTS, Central Hyperadrenergic POTS, Norepinephrine Transporter Deficiency, MSA, Deconditioning, Autoimmune/Antibodies. Since this is one of the newest articles from Vanderbilt, despite what their website says, I think this is the criteria I choose to follow. I follow up with my pots specialist at the end of the month, so I will definitely ask him his thoughts! Additionally, I've also seen paper's written by Dr. Grubb where he lists effective treatments for the "type" or "form" of POTS you have. Not sure how old those articles are, however. I will look for them and post. All the best!

http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html

Lily, that's so great to hear you've got your motivation back. I am tapering off my beta-blocker, propranolol, as I get a lot more benefits from a stronger dosage of Clonidine. It controls my tremor, night sweats, and flushing. It also helps the flight or fright reaction, which would make sense! I am too a bit more relaxed, and now a bonus side effect of a little blood volume!  Take care, Lily!

[Kris4444]

Clonidine made me very drowsy and I was having problems staying awake at work. I don't work anymore so if I had to, I might consider trying it again but in January I started on a beta blocker (nadolol) and it has really worked wonders for me, brought heart rate and bp down and gave me better tolerance to exercise/ride.

[Claire]

Wondering what your experience was getting off Clonidine, was it difficult?

[Kris4444]

I did not have a hard time getting off of it that I recall. I did start taking it again though. I use it before riding my horse and before exercise. It has greatly reduced my heart rate during those times.