POTS (postural orthostatic tachycardia syndrome) and benzos

Hi everyone,

I've been reading a bunch of posts lately, here on BB about POTS.

It seems that a few of us have been diagnosed with this while w/d-ing from benzos.

I'd really appreciate if you could chime in and share your experiences regarding that, or if you could PM me if you'd rather keep this more private.

It would be (I think) a learning experience for all of us, and possibly a new w/d symptom to add to the already long list. Not to mention we might "revolutionize" the medical world and have them look at benzo w/d as a possible cause for POTS.

Thank you.

Amy

Hi Amy, I have no doubt that my POTs which was very bad in early cold turkey withdrawal, was benzo related. Had never experienced anything like it before & it eventually cleared up, only to come back in a milder form after my taper withdrawal.

I also found clonidine pretty much controlled the sx, this time round, (was not offered the med during the original withdrawal).

It has now pretty much gone again & I am sorry you have to endure this debilitating condition.

Thanks ihope.

I'm taking a bunch of meds and i have just started figuring out that they're only making me worse. I've started reducing them gradually and certain things are getting better, but I have a long way to go. W/d from ativan was a walk in the park compared to what I am experiencing now.

Hopefully once my tapers are complete (I'm trying to go meds free) I'll start seeing some improvement in my condition.

I haven't tried clonidine as I'm hypotensive, so that would only make things worse for me. Plus, I've been having nasty side effects to almost all the drugs I've tried for my condition...which makes me think that it's my body's way of rejecting something it doesn't actually need.

My symptoms improved to some extent only to get worse once I started reducing the klonopin. Makes one wonder...

Amy

Clonidine is a paradoxical med & more complex as it acts on the NMDA receptors to relieve glutamate toxicity which I think was a significant contributor to my sx.  I have been mildly hypotensive all my life & in withdrawal the hypotension was so extreme that on one occasion, my doctor thought I must be on a strong opiate for it to be so low.

For me, the clonidine has acted to keep my BP low/normal with no extreme swings, but I appreciate that every one is different.

does the opioed lower pressure because you are in withdraw.  I was not tapered down ,but put on phenobarb .  This lowered my bloodpressure ,it ment that I was in withdraw.   

Hypotension is also a side effect of opiates/opioids. I was not on any opiates, the doctor just couldn't understand how my BP could be so low, but he didn't factor in benzo withdrawal.

 

When taken together will benzos, phenobarbital may also cause hypotension.

Thanks for sharing that. I will make a note of it and look into it. I doubt though that my doc will be willing to prescribe it for me.

I did have some nasty BP swings after being diagnosed and after I started taking meds for my POTS (short spikes - they never lasted more than a couple of minutes) and I've recently realized that they were from a combo of florinef, too much water and too much salt (I was in fact following my dr's direct orders - 4 liters of water and up to 10 g salt a day). Ever since I decreased my florinef along with my water and salt intake, my BP leveled off.

Amy

 

I'm glad your BP has stabilised somewhat, it's a most unpleasant condition.

I took some percocet for pain a while back, and I can attest to the fact that it lowers the BP. Now I take (rarely) tylenol with codeine and the only reason it doesn't affect my bp too much is the fact that it also contains caffeine.

I don't know much about phenobarbital as I've never taken it.

 

Indeed, those BP swings are horrific. Hopefully they are a thing of the past now. They were at their worst when my dr tried me on Lexapro - I had them around the clock for an entire week.

 

Ihope, I know we're all different, but still, how long did it take for your POTS to clear up after you finished your taper?

Amy, I'm pretty sure the clonidine has played a major role in treating the POTs as I hardly suffered it all during the taper & withdrawal. 

 

After my cold turkey, it was very bad for at least 6 months & started to ease after that & I was fine again at 12 months out.

Hi again Amy, thought you might be interested in this thorough review of POTs:-

 

The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

 

 

The author states that:-

Central sympatholytic medications are often useful and well tolerated in patients with the central hyperadrenergic form of POTS, but may not be as well tolerated in neuropathic POTS. Clonidine is an alpha 2 agonist that acts centrally to decrease sympathetic nervous system tone. Clonidine, at doses of 0.05 mg to 0.2 mg PO BID, can stabilize heart rate and blood pressure in patients with a large amount of postganglionic sympathetic involvement. Unfortunately, it can also cause drowsiness, fatigue and worsen the mental clouding of some patients. Methyldopa, a false neurotransmitter, is sometimes more successful in controlling symptoms in these patients at doses of 125 mg to 250 mg PO TID [39].

 

I have not had any drowsiness or fatigue from clonidine & unfortunately it wasn't effective at treating my withdrawal related insomnia, although that also cleared up fairly quickly this time.

Can you explain to me what kind of symptoms you are having?  I think I may be having something like this, but I am not sure.

 

Since I started withdrawaing I have a low heart.  In addition, now my blood pressure is lower.  It used to be normal or high normal on klonopin.  When I get up my heart pounds fast and hard.  I have headaches all the time.  It feels like my whole nervous system is out of wack.

Ihope,

thanks for the article. I don't have the hyperadrenergic POTS, but rather the hypovolemic one - according to my specialist, so I think that's why he never suggested clonidine. I had my supine and standing norepi levels 4 times already and they are not at all elevated.

Waterpolo,

to the best of my knowledge, most POTS patients suffer from an elevated heart rate (hence the T for tachycardia). Also, POTS has to do with the autonomic nervous system - the one responsible for the "automatic" functions of the body - heart rate, blood pressure, breathing, digestion not with the central nervous system.

What exactly makes you think you have POTS?

I don't mind sharing, but I can assure you that listing my symptoms here won't help you - most my symptoms are not exactly typical for POTS - even my dr admits to this, but he can't really point me in the right direction either.

You might try something drs call a poor man's tilt table test -check your blood pressure and heart rate after 10 min of lying down, then stand and recheck your vitals immediately upon standing, then at 1, 3, 5, and 10 min while standing. An increase in heart rate of 30 bpm or more without any significant changes in blood pressure might be indicative of POTS. It’s not an easy to diagnose disorder, and it takes a lot of testing - a real tilt table test though is the golden standard for diagnosing this.

Hope this helps.

Amy

Ok, it seems that it's not possible to tell whether your condition is independent of withdrawals or may even be helped by benzos. Makes it tircky. I hope you continue to improve.

Do any of you guys find yourself feeling foggy and out of it when your walking . This symptom of feeling out of it seems to come on alot when I'm in motion.

Lynn,

I'm not familiar with what you're describing, but I imagine it's quite uncomfortable. Try checking your blood pressure when you are standing - it might be that it's on the low side, thus the foggy feeling when you're upright. I've read about others - including Ihope - see the previous posts here listing low BP as a w/d symptom.

Blessings,

Amy

I have that really bad the foggy feeling its ruff as amy said check when standing.