Xanax or Other Benzo Withdrawal SUCCESS Stories, Please.

2Cor.12:19

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Hello - I've had ME/CFS for 33 years and have been on Xanax 4 x daily for the last 21 years. I've never had to increase the dose and assumed I would need it for life.

Over the past 10 years I've developed a number of chronic new conditions: Idiopathic Polyneuropathy, tinnitis, dry mouth/eyes, POTS, vertigo, chronic constipation, blurred vision, and occasional vertigo. And I still have low grade anxiety and muscle tension.

Since I rarely have panic attacks anymore, I just assumed all these newer conditions are being caused the ME/CFS.

But after spending some time on the Benzodiazepine Information Coalition and Benzo Buddies websites plus reading The Ashton Manual : https://www.benzoinfo.com/ashtonmanual/ and Dr. Stuart Shipko's "Xanax Withdrawal" (available on Amazon Kindle), I've decided I want to get off. I've already developed a plan to "dry taper" super slowly over the next year.

There's an enlightening article at BIC called "How Benzodiazepines Mimic Chronic Illness and What To Do About It" https://www.benzoinfo.com/2018/04/2...imic-chronic-illness-and-what-to-do-about-it/

I've read a ton of discouraging "horror" stories, but I've also read a lot of success stories. I know it won't be easy even going slowly, and so would like to hear some positive success stories from other ME/CFS patients. Our illness makes coming off benzos even more "complicated" and I really need the encouragement from this community.

There's been a great discussion going on about benzos here at https://forums.phoenixrising.me/threads/benzodiazapines.76226/ . I've appreciated all the feedback there.

Thank you so much!
 
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Sing

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I was on a very low dose of a benzo and got off it by very slowly tapering off. This medication had been helpful to me for sleep and pain but after awhile it started to cause a bit of depression. Just the edge of that depression told me I didn’t want to proceed with it, and at the same time—as it happened—my doctor wanted to get his patients off these medications. So, we were in sync and I imagine that helped reinforce the taper that I did successfully.
 

2Cor.12:19

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I was on a very low dose of a benzo and got off it by very slowly tapering off. This medication had been helpful to me for sleep and pain but after awhile it started to cause a bit of depression. Just the edge of that depression told me I didn’t want to proceed with it, and at the same time—as it happened—my doctor wanted to get his patients off these medications. So, we were in sync and I imagine that helped reinforce the taper that I did successfully.
@Sing - that’s great! May I ask how long you took it and if you took it more than once a day?
 
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I came off of Benzos and SSRI's at roughly the same time. I was in the US and, ...dispirited, to say the least, about having to continue begging for financial assistance to pay for my medications.

I used St. John's Wort as an herbal replacement for the SSRI, but found nothing to help with the Benzo withdrawal. I had found Professor Ashton online and was convinced that overcoming this was possible, and after years of harassment and being treated like some sort of flawed human being that wanted to be dependent on drugs, I jumped in.

I tapered off as best I could, but it was still too abrupt and I experienced severe and protracted withdrawal symptoms. Severe depersonalization was the most difficult, but within about a year, year and a half, I was somewhat stable. Then I quit the St. John's Wort and the next stage began.

It was three years before I stopped experiencing depersonalization and a few more before I felt completely past the withdrawal, but I noticed that I was having a much easier time managing my mental state. With the SSRIs it was very easy to miss a dose, or three, and become much less stable. Now with my brain regulating itself, I became far more stable emotionally.

I also experienced a reversal of hair loss and a strengthening of my nails that was unmistakable, along with a worsening of ME/CFS. :( I believe @Hip has pointed out that some SSRI's actually have antiviral properties, and of course, Clonazepam has long been noted to help with this illness.

I was hoping that getting off of pharmaceuticals would prove to be a solution to this illness. But unfortunately, for me it wasn't.

I have, however, gotten far better with herbal antiviral/antiretrovirals and would never go back. :D
 
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@2Cor.12:19
It's defiitely possible to get off these drugs, but there's no quick, easy way, and all ways are littered with the shattered emotional and mental remains of those who tried to taper off too fast, or without sufficient info and/or patience.


At Xanax 4x a day for the last 21 years, the goal of tapering off in 1 year is wildly optimistic an could lead to some spectacularly dismal outcomes. Your brain and nervous system have been completely redecorated, remodeled, and rewired, your GABAa receptors have been obliterated, and it's going to take time, and a pretty fair amount of it, to get off the Xanax without shocking the monkey pretty badly.

You might want to read some Peter Breggin, who's been an accute critic of the psychopharmacological industry for several decades. I dont know that he has a distinct plan for getting off this shite, but he has a lot of infor, and the more of that you have going in to this, the better your chances of success.

One of Breggin's maxims, and I keep meaning to stitch it into a sampler so I can post it everywhere it's appropriate, is: "The most dangerous thing an adult can do is walk into a psychiatrist's office".

You can get off this crap, it's just that there's no easy-peasy-lemon-squeasy way. Not after the equivalent of 60 mgs of Valium a day for 21 years. Be patient with yourself, read everything you can get your hands on, memorize C.H. Ashton's Manual, try to find a taper specialist, know that it's tough but possible, and again, be gentle with yourself.

We'll all be here for you.
 
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I was able to give up ativan last year for 5 months. I had decreased dose from 1mg a day at bedtime to 1/4 mg over a year. I stopped at 1/4mg and it was fine, no taper from there and no withdrawal symptoms during those 5 months, also no improvement in ME symptoms so I don’t feel like ativan is causing them. But my sleep got bad again after the 5 month period, and I went back on 1/4mg for 6 months. And recently am up at at 1/2 to 3/4mg.
 

2Cor.12:19

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I came off of Benzos and SSRI's at roughly the same time.

I also experienced a reversal of hair loss and a strengthening of my nails that was unmistakable, along with a worsening of ME/CFS. :(

I was hoping that getting off of pharmaceuticals would prove to be a solution to this illness. But unfortunately, for me it wasn't.

:D
@IThinkImTurningJapanese Thank you for sharing your experience. It's very encouraging! I was on Prozac long before the Xanax, for just a couple of years and the withdrawal was awful - lots of brain zaps. I'm glad I didn't stay on it because I can't even imagine how hard it would be to go off an SSRI and Benzo at the same time! Yikes! Congratulations on your success!

I'm sorry your ME/CFS got worse - I fear that will happen to me too. But hey, if I get some of my hair back that would be a plus! :)
 

2Cor.12:19

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@YippeeKi YOW !! Too funny! I've never been under the care of a psychiatrist. When I first developed severe panic disorder and was started on xanax in the ER I was given that option see one but said "No thanks". Instead I followed with my cardiologist and bought Edmund Bourne's Anxiety and Phobia Workbook. I customized the CBT to fit my beliefs and learned some valuable anxiety coping skills - I'm sure I'll be digging the book out again to brush up on them!

Fortunately, my starting taper dose of Xanax is much less that the equivalent of 60 mgs. Valium - pr Ashton.
My total daily Xanax consumption is .6875 = to a little more than 10 mg Valium - .125; -.125; .-125.- .3125
Step one is to get all 4 doses the same @.125 ea.

Thanks so much for the moral support!
 

Hip

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I've read a ton of discouraging "horror" stories, but I've also read a lot of success stories. I know it won't be easy even going slowly, and so would like to hear some positive success stories from other ME/CFS patients.
There was a very good survey organized by Cort many years ago, which examined how people coped with benzodiazepine withdrawal. It turns out that there is a large variation in responses, with some people having no difficulty in just abruptly stopping benzos, yet others having nightmare stories of needing to taper incredibly slowly over 6 months or longer, and getting side effects all the way through.

So it really is the luck of the draw whether stopping will be easy or hard.
 

2Cor.12:19

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I don't know how valid the following information is, but maybe the article could be useful for you: Supplements Accelerate Benzodiazepine Withdrawal - A Case Report and Biochemical Rationale.
@PatJ - Thank you! This will be definitely be helpful! I was encourage by this part too since my tinnitus has been NONSTOP for over 10 years and has gotten increasingly louder along with the development of other new symptoms.

"The individual had been on 1 mg/day Xanax for two years, a moderate dose but a long duration. As a result, he had been presenting increased anxiety, personality changes, and ringing in the ears (tinnitus), all side effects likely due to long-term alprazolam use. "
 

2Cor.12:19

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I was able to give up ativan last year for 5 months. I had decreased dose from 1mg a day at bedtime to 1/4 mg over a year. I stopped at 1/4mg and it was fine, no taper from there and no withdrawal symptoms during those 5 months, also no improvement in ME symptoms so I don’t feel like ativan is causing them. But my sleep got bad again after the 5 month period, and I went back on 1/4mg for 6 months. And recently am up at at 1/2 to 3/4mg.
@Silencio - It's good to hear you came off it relatively easily the first time. Have you ever tried CBD oil for sleep? My husband got off Trazodone for insomnia after being on it for 15 years because CBD oil works even better. He takes 150 mg full spectrum capsules. I'll probably develop insomnia going off xanax and plan to give CBD a try when I get to that point.
 

2Cor.12:19

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There was a very good survey organized by Cort many years ago, which examined how people coped with benzodiazepine withdrawal. It turns out that there is a large variation in responses, with some people having no difficulty in just abruptly stopping benzos, yet others having nightmare stories of needing to taper incredibly slowly over 6 months or longer, and getting side effects all the way through.

So it really is the luck of the draw whether stopping will be easy or hard.
@Hip Golly, I don't know how I missed that one! Thank you so much! Yes, I know it's a total crapshoot.
 
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Fortunately, my starting taper dose of Xanax is much less that the equivalent of 60 mgs. Valium - pr Ashton.
My total daily Xanax consumption is .6875 = to a little more than 10 mg Valium - .125; -.125; .-125.- .3125
Step one is to get all 4 doses the same @.125 ea.
Sorry for the misunderstanding. I based the 60 mg's of Valium equivalency on your post, i.e. Xanax 4 times a day, and assumed that you would have been taking 1 mg Xanax 4 times a day.

Too funny! I've never been under the care of a psychiatrist.
I quoted Breggin's statment re " .... the most dangerous thing ..." to underline his strong and determined opposition, as a medical professional, to the wholesale prescribing of these dangerous and potentially lethal drugs, not because I assumed that you'd been prescribed Xanax by a psychiatrist. The disturbing fact is that everyone from dentists to gastroenterologists hands out these prescriptions, along with antidepressants, like party favors. Ditto ER's.

You clearly are going about this the right way, and yes, I'm betting that you get your hair back, too, as an additional bonus !!!