Benzodiazepines And Pots

[lynnie22]

Because of insomnia, I have been taking ativan for a long time. The sleep study people at MAYO suggested there might be a relationship between my orthostatic intolerance and taking ativan. Does anyone have any thoughts about that? I have been trying to cut down but it is not easy.

I'd be interested to hear what you think or your own experiences.

[Guest Alex]

Lynnie,

a while ago I posted something similar- 2 topics - only I had no dr to back up my suspicions. I believe my POTS was due to ativan w/d. Since I posted that and possibly opened a can of worms on the forum, I communicated with a bunch of people withdrawing from benzos and a lot of them complained about orthostatic intolerance. To have this confirmed by specialists from MAYO sounds pretty interesting to say the least.

Cutting down from ativan about a year ago, and from klonopin more recently have been the most challenging (to say the least experiences) I've had.

I am determined to try to wean myself off all meds and see if I can get to any conclusion, but I have to take it easy as 1.5 years on low dose benzos have really done a number on me and I'm having a pretty hard time right now. I've also been looking for a new dr as the one I've seen so far hasn't exactly been very helpful....but that is another story.

One thing I know - I will not ever touch another med that has the potential to mess with my brain - be it a benzo, an anti depressant, a sleeping pill, an SSRI, SNRI etc - I've had horrible reactions or withdrawal problems from most these types of meds and while they may seem to help, for me they have done more harm than good, so, lesson learned.

I'd be really interested to hear more about what the MAYO people had to say, if you'd be willing to share that.

(if you search the forum you should be able to find the 2 threads - for some reason I can't copy paste or I'd provide you with the links - one is called Benzodiazepines for POTS, another is POTS benzodiazepines - beta blockers possible connection)

Best,

Alex

[lynnie22]

WOW....thank you for responding. I will try to find the threads....not great at it, but sounds really interesting.

And thanks for your info about you, although sorry you're having a tough time, but it sure is tough.

Well here's my MAYO experience in a nutshell. I went there having no idea what was wrong with me, just that I was out of breath and my heart raced whenever I walked at all and I was exhausted. Never took my ativan use into account, although it has been there for too many years....stopping or even cutting down is really, really hard. At MAYO, besides getting diagnosed with POTS, I was sent to the sleep study clinic where the psychologist in charge and the cardiologist who diagnosed me felt that there might be a strong relationship between the two, not ativan as cause, but certainly as playing a role in CNS dysfunction. They didn't go into detail, unfortunately, as I don't think there has been enough research on this, but he said that my sleep spindles whatever they are, were moving very rapidly while I slept, caused by benzos, which also was impacting my oxygen level.

I'd be curious to hear more about the responses you got when you posted about benzos.

And eager to hear other comments and thoughts.

[Angela]

why were you taking ativan in the first place.?

[Guest Alex]

panic attack/nightmares combo

[HopeSprings]

Wow, I'm amazed Mayo is making this connection. It's refreshing to hear that Doctors are willing to consider medication as a possible player here. Are they suggesting you come off the Ativan? Maybe once you're off and your body heals, you'll feel better. I hope so!

Alex - you may have opened a can of worms, but that's ok - we should be able to talk about our personal experiences and you never know who might benefit from hearing about it. Since we don't know what causes this, we should be open to looking at all possibilities. If the symptoms came after starting a medication or during withdrawal, it's logical to take a closer look at that. And I feel the same as you - after really bad experiences with both benzos and SSRIs, I will never take another brain drug again. I think there's something genetically different about us that makes us more sensitive or more susceptible to these responses - but that's a whole other conversation.

[Angela]

Maybe a cause for some but not in my case, I was med free and had been my whole life when pots hit.

[angelloz]

hello,

i am currently trying to get off of Ativan....yes horrible...may I ask what does you were taking??

Angelloz

[Guest Alex]

Thanks Naomi, I am still trying to figure things out, but I have no dr in my corner for now so it might take a while.

For what it's worth - those of you trying to come off benzos - look for the Ashton manual, it's available for free online. Also, most importantly, do try to get a dr to help you...preferably a benzo wise dr (they are as rare as Lyme literate drs) so that you can withdraw with as little discomfort as possible.

Angelloz, I was on no more than 1 mg ativan a day, but for the most time I took 0.5 mg daily. It was prescribed to me as needed, but I got hooked quite fast and I started taking it daily at 0.5 - 1 mg depending on the day. When I got diagnosed with POTS I was a couple of days from my last ativan, and my dr thought I needed klonopin - 1 mg a day (which I believe is equivalent to 2 mg ativan).

Alex

[lynnie22]

This is all really interesting. it was prescribed Ativan by a neurologist for insomnia. Years ago. I had insomnia for years before, but ativan was a whole other experience. I used to take 1 milligram, now I take between 2-21/2, plus ambien. Hard to admit, but true. You keep building up an immunity and have to increase the dose. I tried to stop all at once and didn't sleep for a week. It just kept getting worse. I don't know the correlation between ativan and POTS but the people at MAYO did think there might be one. And I wouldn't be surprised.I have been unsuccessful at getting off the drug, but am trying, a tiny bit at a time. I was sent to a sleep study center by MAYO here, and they had me buy a blue light to use in the AM, although it never helped me sleep better. I think the only way to get off is to cut down by 1/8 every two weeks, from what I've learned. There are no doctors that I have found who are even interested in helping you withdraw.

I'll be thrilled to be benzo free at some point.