Looking to talk to others in the less than 10% group that is dealing with weird sensations from protracted withdrawal

[[vo...]]

I'd really talk to others dealing with protracted withdrawal symptoms from benzos. I was on xanax for 40 years and I am paying dearly now with these new symptoms. I have so much to share, but I'd like to connect with others with the same unusual symptoms. I don't know how long I can handle living with these symptoms every day. I hope someone responds...please!

[[Cr...]]

Hello @[be...] Welcome to Benzo Buddies.

I'm glad you found this site but I am sorry to hear that you are still suffering so severely. I hope the support and information you receive can help you to continue working your way through this process.

How long has it been since you stopped Xanax and how quickly did you come off?

[[vo...]]

6 minutes ago, [[C...] said:

Hello @[be...] Welcome to Benzo Buddies.

I'm glad you found this site but I am sorry to hear that you are still suffering so severely. I hope the support and information you receive can help you to continue working your way through this process.

How long has it been since you stopped Xanax and how quickly did you come off?

 

[[vo...]]

Thanks Crono!  I was on xanax for 40 years!!! 6mg a day. If I had only know the pain I'd be suffering now, I don't think I would have ever continued to take them. I started tapering on 7/16/23 and was fully off of them 7/30/23. Knowing what I know now, I'm wondering if my body could handle tapering off that quickly. I developed akathasia within weeks after that and ever since, I've developed one strange symptom after another - vibrations throughout my body, itch spots all over my body, feeling someone was holding a match to my skin, all over my skin, skin feels like bugs are crawling on it, clothing touching my skin - I just want to rip it off....and so many more than what I just listed. I just don't know how long I'll be able to deal with this without losing my mind. No one understands and since they can't physically see something wrong with me, they think it can't be as bad as I say. If they only knew how horrible it is every single day.

[[Cr...]]

You got off of 6mgs of Xanax in 2 weeks? Physically that is closer to a cold turkey than it is to an actual taper.

@[be...] why did you come off so fast? Were you forced to? And was it done with support from a doctor?

I see you are interested in The Long Haulers group. We generally consider a minimum of 18 months in recovery as a suitable timeframe to consider seeking support there. You are not even 1 year into recovery so it is too soon to consider yourself as being in protracted withdrawal. 

The Withdrawal Support, Use, & Recovery forum (where this thread is now) is a good place for someone like you to start out and connect with others about what you are going through.

[[vo...]]

I had started hearing and seeing things that weren't real, a couple of weeks before. It scared me and me and my daughter really believed it was being caused by long term usage, so I wanted off of xanax badly. I worked with a psychiatrist and I believe he had me tapering at a slower pace, but I was determined to get off of them so I accelerated the tapering. I had no idea I would wind up with protracted withdrawal. I never knew what could happen if you taper so quickly. Ok, thanks for the info on the long haulers group. I'll stay within this forum for the time being. I'm hoping some of these symptoms will start to subside. No one should live with this.

[[...]]

Hi @[be...], that doesn't sound like protracted wd, and the symptoms you mention seem quite familiar. My son (23 y/o) is also seeing and hearing things that aren't real at times, mainly when he's physically stressed (during intense workout) or when he's tired. It can be quite scary but this symptom has diminished in frequency and duration (less than a minute atm while it could last for an hour or more 6 months ago, when it would pop up at any given moment). I think this started for him at around 11 months, when he used to see really scary things, now they are milder and sometimes even friendly which I take to mean that his anxiety is calming down.

You will find that you must expect the unexpected in this process, the weirdest symptoms show up and disappear at any time. 

 

[[So...]]

Hi, I just wanted to comment and let you know I am a couple weeks shy of 1 year off of a ct from benzos as well (July 16th) & I am having a lot of similar symptoms as you are still too... totally not uncommon to still be severe at this time frame after long time usage and CT.

 

Hang in there, it will get better, it can just take awhile.  I see a lot of good things happening for people in their second and third years.  Here for ya if you need someone to talk to ❤️

[[vo...]]

[[...]]

8 hours ago, [[b...] said:

Thanks Crono!  I was on xanax for 40 years!!! 6mg a day. If I had only know the pain I'd be suffering now, I don't think I would have ever continued to take them. I started tapering on 7/16/23 and was fully off of them 7/30/23. Knowing what I know now, I'm wondering if my body could handle tapering off that quickly. I developed akathasia within weeks after that and ever since, I've developed one strange symptom after another - vibrations throughout my body, itch spots all over my body, feeling someone was holding a match to my skin, all over my skin, skin feels like bugs are crawling on it, clothing touching my skin - I just want to rip it off....and so many more than what I just listed. I just don't know how long I'll be able to deal with this without losing my mind. No one understands and since they can't physically see something wrong with me, they think it can't be as bad as I say. If they only knew how horrible it is every single day.

I have been of  3years still suffering. I'm thinking this won't get better.  Xx

[[Br...]]

2 hours ago, [[b...] said:

These are all classic sensory symptoms that I have been tracking and then discovered on the Benzodiazepine Information Coalition's website. Here's how they have them listed: Sensory symptoms: tinnitus, tingling, numbness, deep or burning pain in limbs, feeling of inner trembling or vibration, strange skin sensations.

There are a lot more symptoms that I haven't even included that are also listed on their website. These are just the most unusual ones. I believe it's my body's way of telling me it's trying to recover from years of benzo abuse.

Welcome to BenzoBuddies @[be...] - As you've learned, the symptoms you describe are common withdrawal symptoms.  You've probably seen  The Ashton Manual Ch. III list of withdrawal symptoms on the BIC site.  It's a pretty thorough list but doesn't include all symptoms.   It's good to remind yourself that these miserable symptoms are a sign of healing taking place and that over time they will ease up and fade away.

[[So...]]

I just wanted to hop on here and mention too, I see you are taking ambien as well... no rush to get off of that at all but you may want to look into tapering in the future, as ambien acts on the same receptors as benzos do.  

I know @[Pa...] was taking ambien in withdrawal too, not sure what the general rule of thumb is but i do know that is one of the few drugs that may significantly impact benzo wd, I sure wouldn't want you to taper anything else that isn't giving you issues in this severe state, but maybe something to think about in the future

 

[[vo...]]

Soapybits, I completely agree with you, but I'm between a rock and a hard place. The only relief from these horrible sensations I get is when I take my Ambien at night. As much as I hate nighttime, I look forward to taking that pill to get the symptoms to subside. I went for four months because of the withdrawal from Xanax, getting about 10 hours of sleep a week. Now with the Ambien, I get 2 - 3 hours a night. It keeps me sane. I just can't win. UGH  (Also, I changed my user name to something more positive - the more positive I can be about this situation, the better the mindset I will have) :-) 

[[So...]]

@[vo...] no no, dont take that the wrong way at all please, I don't want to make you think that you have to get off the ambien right now- I totally understand I am on other drugs too I haven't been able to get off of!  I just meant in the future when you have a little more even ground you can get some members advice on it who are more familiar w ambien   totally understand being between a rock and a hard place.

 

Almost wondering if there is a way to split the ambien dose up more throughout the day so it is consistent in your body and you could rule out any interdose wd, but I don't feel qualified to try and figure that out beyond that idea since I have never been on ambien and not sure the of the typical protocol.

 

So glad you are attempting to be more positive!! I try too, its super hard and cant always be done but i always advocate for being as positive as possible where you can be- and not beating yourself up when you can't be

 

 

[[vo...]]

@[So...] I didn't take what you said the wrong way . I appreciate your support. I thought about this whole thing last night and I'm really angry that doctors have known about the potential consequences of benzos for years now and continued to prescribe them. The least they could have done is warned us of the potential consequences that we are now dealing with.

[[So...]]

Oh I know, I have anger, too.  It is okay to have those emotions from time to time, but try to not let them consume you.  

 

I may get flack for this- but a lot of doctors are simply uneducated on the matter.  I have had a lot of anger at my doctor, but in reality he is an 80 year old man who truly thought he was just helping my anxiety, I believe.  

 

I think the majority of the problem lies way higher up in the Healthcare system.  Pharma definitely knows the risks, they even have it in their labels now, and yet we are still not given informed consent for any of these drugs.  I truly think a simple paper requiring a signature at the bottom would suffice, and I am not one who thinks the drugs should be outlawed.  But just like with any exploratory treatment or surgery, we should be informed of the worst case scenario, even if it is unlikely.  

 

Anyways, try to not direct your anger at the wrong people.  I am planning on writing my doctor a letter when I am better.  I don't think it will change much, since he is very old and probably retiring soon (one could hope he would finally retire) but I would just like to let him know what happened in a calm sensible manner.  And I am sure he would not believe me until I am healed, until then it will be "my mental illness".  

 

I have a feeling there will be a large outbreak of protracted wd in my area as well when he retires, since he is the only doctor in the vicinity who will prescribe benzos and he prescribes them a LOT.  So I am also hoping I can heal enough to support my community when that time comes

[[Pa...]]

23 hours ago, [[v...] said:

I went for four months because of the withdrawal from Xanax, getting about 10 hours of sleep a week. Now with the Ambien, I get 2 - 3 hours a night.

Our stories are similar, I held out for months after my Klonopin cold turkey, then gave in and started taking Ambien.  I remember counting the hours until bedtime but like you, I only got 2 or 3 hours of sleep. 

Here is what I discovered though, the Ambien wasn't helping me, it was actually keeping me from recovering because once I stopped it, I was fully recovered in days. The inner trembling stopped, the anxiety vanished along with the dark thoughts and I could sit on my sofa in peace.  It took me a couple of weeks to get my sleep back but I didn't really mind that because I felt so much better.

  I have no idea when I actually recovered from my Klonopin cold turkey, it may have been months before but by continuing to take the Ambien, I was keeping myself sick.  

I don't know if the same is true for you, but I hope you can part with the Ambien at some point because that short half life is pretty much a cold turkey withdrawal each and every day.