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Pots Caused By Benzo W/d -- Need Advice!!


Hoosierfan
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Hi all -- haven't posted here in awhile b/c I've been going through a particularly nasty case of w/d from Ativan -- oh lord. I'm in for the long haul (probably another 6 to 12 months) with it. So, I've been hanging out on a website called "benzobuddies" for folks who are tapering and off of benzos and dealing with withdrawal like me.

So this question is not for me but for one of my "buddies." She has developed POTs after tapering off of several years use of Xanax. She is pretty much bedbound -- any movement or stress causes tachycardia, and she even can have it laying down. She also gets a "jolt" first thing in the morning.

She never had any tachycardia before being on the benzos, so it is assumed that it will resolve with time as her withdrawal resolves, but that may take awhile (if you didn't know typical benzo w/d can last 6 to 18 months and for some folks up to 3 yrs).

So the question is this: first, is the tachycardia harmful (meaning, does she NEED a med to manage it until her w/d is over). And second, assuming that question is "no, it just feels horrible", do you have any suggestions for how she might manage it? She's reluctant to start a med if it isn't needed b/c she is sensitive to side effects, so any "natural" suggestions would be helpful. I've sent her the "what helps" link already. I recall there was a POTsie on here awhile back who mentioned she was going to manage hers "naturally" but I can't recall who it was.

And, if anyone has experienced something similar (i.e. drug w/d induced POTs) would love to hear it.

Thanks!!!! Hoosierfan

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I went through it - it's awful - and yup, can last years. It's possible that Klonopin triggered my illness, but I can't say for sure. I personally wouldn't add more drugs to an already benzo battered brain - I'd let it heal. I'm not aware of any natural ways to deal with it - but maybe others know. I hope your buddy feels better with time.

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Please be aware that natural things (I'm talking supplements, pills, ect) can be just as dangerous as chemicals. Many POTS patients respond very badly to melatonin for example.

I have not had her experience, but she should get cardio work-up to rule out anything dangerous and TTT to confirm POTS. If that's the case, from what I've read, been told, researched, the tachycardia in-and-of-itself isn't harmful...but she needs a work-up.

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What's her blood pressure like, and is she staying adequately hydrated? A lot of people swear by electrolyte drinks, or at least water with a bit of salt in it. This is more aimed at the folks whose blood pressure tends to be low rather than high. If that's the case, it's probably one of the low-risk things to try.

I was on that forum for a few months when going through gabapentin withdrawal **** a year ago. She has my sympathy.

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I went through it - it's awful - and yup, can last years. It's possible that Klonopin triggered my illness, but I can't say for sure. I personally wouldn't add more drugs to an already benzo battered brain - I'd let it heal. I'm not aware of any natural ways to deal with it - but maybe others know. I hope your buddy feels better with time.

Naomi, I'm sorry you went through benzo w/d. I know everyone is different, but how long did it take you to recover?? I was put on a baby dose of Klonopin for about 6 months and then Ativan (stupidly....docs don't get it), so I kindled and am now in a long w/d process. 7 months in for me and I'll probably be pretty sick for a year, maybe 2 by the time it is all done. Ugh. But, I know it will get better.

Thanks for the feedback everybody, keep it coming!!

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Look up darkness therapy for the insomnia, by the way. It's a drug-free method of getting your body to produce its own melatonin at appropriate levels, by working with what colours of light you're exposed to. It's also done well in trials for rapid cycling bipolar disorder, randomly.

My POTS got a lot more noticeable after the gabapentin withdrawal, now you mention it, but then I also had gallbladder surgery at around the same time. No wonder I had such a bad year of it in 2012.

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It's a long story and a really confusing issue for me. I never really recovered. Some symptoms went away within a few months (like itching all over my body which felt like bugs crawling on me), some lessened over months or years, but remained to a lesser degree, but most never went away. That was 15 years ago. Either I was simultaneously sickened with some other illness (some of my Doctors think CFS) or that medication caused damage to my health. I think this only happens to a small minority of people so don't worry, plus I went cold turkey, which I think contributed to my outcome. Hang in there.

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I'm not going to say that I'm seeing a pattern here, but I raised this exact question a while back - did my benzo use and subsequent withdrawal trigger my POTS? (you can search the forum for my post).

I've asked the opinion of several drs and got mixed answers, most of them said no, but these are the drs who told me klonopin is safe to take long term, so.....no further comments here. I've also communicated with a bunch of people withdrawing from benzos that complain about symptoms that are 'too similar' to mine, so I can't help but wonder who has it right?!

The truth is probably somewhere in between.

While I did have some episodic tachy episodes prior to benzos, I HAD NEVER HAD postural issues until I stopped (gradually) taking ativan - several poor man's ttt's done in several dr's offices (pre as well as post taking ativan) showed no evidence of POTS, yet last January a few days after my last ativan I had a real ttt that was positive for POTS.

To add insult to injury, after being diagnosed with POTS, after all the pain and suffering from the ativan withdrawal, I was prescribed yet another benzo - klonopin - and all I can say is that my life has never been the same ever since. I weaned myself off it last month and things are ...let's just say hectic for the time being. I won't get into details with the number and/or intensity of symptoms I'm dealing with on a daily basis as i don't want to discourage anyone that is benefiting from benzos, but my POTS is definitely acting up lately (and I'm still taking my POTS meds- the same meds that helped me a while back).

No dr i've seen in the past couple of months can make any sense of what is going on with me, but things are anything but pretty...jeez, I've been on benzos for 18 months, I wouldn't expect anything else.

In terms of advice - I know first hand what it means to have your heart racing and to be willing to do anything to get some relief, but I'd say that your 'buddy' needs to try to give herself some time before trying any more meds or supplements/herb as her whole body is still readjusting to the no-benzo state - as you probably well know.

CBT - cognitive behavioral therapy is supposed to help A LOT, also relaxation techniques (breathing - try looking up Buteyko breathing), guided mindfulness meditation - John Kabat Zinn, aromatherapy, yoga, stretching exercises, any hobby that can prove some distraction and refocus her attention; also, a big yes to staying properly hydrated and eating healthy.

The other thing - for her own peace of mind she might want to see a cardiologist and make sure her heart is OK - an ECG, some blood work, a stress test, maybe an echo look like the right choices, but I'd say that a TTT may be premature at this point. (Can she try a poor man's ttt at home to see what happens?)

My heart goes out to you, Hoosierfan and to your virtual friend - I'm going through benzo withdrawal right now, unfortunately for me for the 2nd time around, and like i said before, POTS is a walk in the park compared to this.

It is not my intention to scare anyone: Altruism, please don't panic, I've been where you are and at that point I just swallowed the pills (with a lot of water of course, to help increase my blood volume ;) )and made what felt like the right choice for me. Naomi, I'm so sorry to hear that you've been through this for so long, Batik, those gaba receptors sure have a mind of their own and I'm sorry your problems got worse after withdrawing.

Please feel free to PM me if you think I can help in any way.

Alex

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You said that your friend is bedbound and that any stress or movement causes tachycardia. That's not necessarily POTS if the tachycardia isn't only triggered by orthostatic changes. The withdraw could be causing some other form of tachycardia and that should be determined by a cardiologist. Assuming its POTS is not safe.

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I agree with Katybug. Also taying in bed could make it worse. In fact, being in bed or a long time can cause POTS, for example, in elderly people, people recovering from surgery, etc. though that kind of POTS usually goes away quickly after practicing being upright again,

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In my own case my symptoms started about 2 years before being put on ativan and it actually helps my dysautonomia and POTS/MCAS......which is strange and I have never had to change my dose to get more effect.......I completely crashed after having a hysterectomy/ appendectomy....so maybe it really comes down to any kind of trauma or upset to the ANS system .....I actually found the ups and downs of trying all of the SSRI/SNRI meds right after my hysterectomy probably made matters much worse also... and I have found recently it isn't so great trying to come off the Florinef either after almost 3 years :( ....to be honest sometimes I wish I didn't try any of these meds....I don't think any of them are necessarily good long term....(I have a friend who became very disabled after trialling cymbalta and lyrica).....so who really knows?..... I just want to get better no matter what the cost ;)

Bren

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I was never on meds or benzos prior to pots. I only started klonopin generic after a really horrible flare last year when I was still undx'd but my primary thought I was possibly having simple complex siezures, whereas Klonopin is also used to treat siezures. I have had pots symptoms leading up to flares on and off for some years prior to klonopin. and I am certain I wouldn't be functioning at the level I am currently if I didn't take it.

But, sorry for your friend who is going thru such aweful withdrawals.

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I was never on benzos prior to POTS either (I'm on 2mg of Klonopin per night), and it has helped my symptoms immensely. No more adrenaline rushes and my insomnia is gone. I believe the extra/normal sleep has also helped my body to finally begin healing, which has improved my neuropathy in conjunction with acupuncture and supplements.

I know this is a touchy subject, but my neurologist has no concerns about me being on the Klonopin for as long as necessary, so long as it's helping me to live a normal life. While I don't love the idea of being on benzos because they are so polarizing (opinion wise) I do have faith in my doctor and can't deny that the Klonopin has helped give me my life back.

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Cmac,

I've been on 0.5 - 1 mg ativan as needed for about 4 months, then I started needing it on a daily basis in order to prevent daily panic attacks, to be able to sleep, to be able to function (prior to that I only had a few episodes of tachycardia at rest). I've taken ativan for 6 months altogether - rapid tapering included. Sleep had never been a problem to me before, I was highly functional and I also did not have - to the best of my knowledge - postural tachycardia prior to that (I had several poor man's versions of the ttt performed by different drs to confirm that).

Everyone's experiences with drugs are different though - 'one man's trash is another man's treasure' is true even in respect to meds.

Alex

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cmac,

I was on Lexapro for 2 weeks (samples from doc) and then due to an insurance issue, they couldn't fill my prescription so I couldn't take for 5 days. By day 2 I was in the urgent care thinking there was something seriously wrong with me. They aske dif I stopped taking any meds and I told them about the Lexapro. They said that I was withdrawing and it is common. If you google Lexapro withdraw you can find all kinds of info on it. When I got my script, I was better in 24 hours. When I had to stop taking it, I had to wean off carfully and slowly.

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