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POTS/Dysautonomia Support Group


[7d...]

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[7d...]

I know there is a lot of us here on benzos that suffer from POTS (Postural Orthostatic Tachycardia) http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

or Dysautonomia

http://en.wikipedia.org/wiki/Dysautonomia

 

Some of us have had POTS caused by benzos, some of us went on benzos for POTS, there are so many posts around the board that are older about it that I thought it would be nice for us to have one place to talk about it.

 

 

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[7d...]

I myself am starting to believe that I may have suffered from POTS for a few years now but that it gradually worsened now that I think about things. I'm beginning to believe that POTS is what caused my body to no longer tolerate even a few glasses of wine and sent me into a 2 week long alcohol binge because my heart rate was out of control and I kept drinking trying to slow it down. It never did slow down, I went to rehab and they loaded me up with benzos hard, while in rehab I noticed that my heart was always racing, I always felt dizzy even when sitting up, the only time my heart rate was semi normal was laying down... kind of like it is right now.

 

I had originally thought that my body was addicted to the benzos and when I got out of rehab I was prescribed Klonopin because my heart rate was out of control when I would move around and I couldn't sleep (both characteristics of POTS, and benzo w/d). That started my lovely benzo journey, which a lot of you know has not been fun for me, in fact it's made things way worse. I'm pretty much bedridden and I do indeed have POTS. I worry that it may never go away if it was caused before benzos. If it was caused by alcoholism/benzos there is a good chance of it going away eventually once my brain heals. I can only do my best to get off benzos and wait to see what happens.  This process of getting off benzos will also be harder because POTS symptoms and benzo symptoms completely mimic each other as far as w/d goes.

 

Hopefully others who have POTS or have have recovered from POTS will post here so we can support one another.

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[7d...]

I don't have it, but way to go,on your new thread!

Hope you will get lots of new replies and discussions here...

 

Thanks Mom, I hope so, I know it's very common among us benzo sufferers.

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[7d...]

Coasterguy02879 developed POTS while tapering off of valium.

You might want to connect with him because he is seeing improvements.

http://www.benzobuddies.org/forum/index.php?topic=101319.msg1302039#msg1302039

 

I have been! He freaking rocks seriously, such an awesome person! He was one of the first people I watched on youtube once I got into this mess!

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I got pots after being off benzos for 12 months. I think I had it at the beginning of wd though. Im 80% better now.
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[7d...]

I got pots after being off benzos for 12 months. I think I had it at the beginning of wd though. Im 80% better now.

 

Good to know! Did you fight through it and push yourself to still be active and try and do as much normal stuff as possible? I know laying around only makes it worse but sometimes it's so hard not to just lay around when you feel so fatigued doing normal stuff.

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Yay! This is great that you started this thread. Even though I haven't been diagnosed with POTS I'm convinced I have it. Can't wait to hear how others are doing. Jenny
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[7d...]

Yay! This is great that you started this thread. Even though I haven't been diagnosed with POTS I'm convinced I have it. Can't wait to hear how others are doing. Jenny

 

It has been hard some days, better other days for me, today just taking a shower was enough to exhaust me!!!

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I have been there! I remember when just getting out of bed was a struggle, and then I would get dizzy and feel like I was gonna black out. No fun!
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I have been there! I remember when just getting out of bed was a struggle, and then I would get dizzy and feel like I was gonna black out. No fun!

 

Here Here me too Jenny, even to this day every time I stand up about 15 seconds later I get dizziness, burning head and face, brief pupil dilation (about 15 secs in both eyes before they return to normal ) and have to lean forward to stop myself passing out .. been like that for 10 years now ... interestingly I find it better to come up from lying down than I do from a sitting position .. it does get a bit tedious to have it every time but have learned to deal with it ... it used to cause many blackouts falls and faints now it causes a lot fewer because of how I manage and anticipate it ..

 

T

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Hi

 

It did develop whilst on Zolpidem and No it hasn't got any better it still affects me everytime I get up from a sitting position ... its also worse at certain times of the day ..

 

T

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I am so sorry! I hope it gets better for you. I thought it was suppose to go away if you developed it while on benzos??
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[7d...]

I am so sorry! I hope it gets better for you. I thought it was suppose to go away if you developed it while on benzos??

 

It looks like Thundercats c/t'ed though or am I wrong?

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Hi

 

Yes I did CT from a high dose of Clonazepam given for RLS and PLMS as I developed a paradoxical reaction to the drug.. it may improve over time I am hoping so, it has become a daily companion along with a few other symptoms, dizziness, medication sensitivity, flu like feeling etc even after over 5 years off .. symptoms are a lot less than several years ago where I had everything and more, well over 60 symptoms so I am hoping that these last few will go aswell ..

 

T

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  • 5 months later...

I was never diagnosed but have dysautonomia symptoms. I would experience off and on fatigue and once I wore a 21 day heart monitor and it recorded events where my heart rate would go from 80 bpm sitting down to like 120+ by just standing up. I've never fainted but had moments where I felt like I might.

 

It seems to come and go though. Is this consistent with other people's experience?

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  • 1 month later...
This is the one thing that is limiting me so much. It's maddening. I just got over feeling lightheaded upon standing so I decided to push it and go for a walk and it revv'd me up something awful. Can't even go for a simple walk anymore.
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I agree lui, this is my most debilitating sx . I get dizzy constantly and have trouble getting a deep breath of air. I've heard it can take years for it to go away which really scares me.
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  • 2 months later...
Sleep apnea to go with that side of POTS, anyone? My friend has episodes of tachycardia and apnea while sleeping/ resting. She was on K for several yrs and c/t'd. My c/t ambien has me on a beta-blocker which does its job, but leaves me with no reserve energy.
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  • 1 month later...
I was recently referred to a Cardiologist who said it was probable that I had Dysautonomia/POTS and prescribed me a beta blocker (haven't taken it yet though). I'm extremely relieved that I found a doctor who who is taking my symptoms seriously. POTS is what landed me on benzos in the first place. My doctor thought I just had "severe anxiety." I'm looking forward to eventually getting off the benzos and treating the real source of my problems.
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  • 3 months later...

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