Almost 13 months out, still struggling a bit - wanted to get a pulse from you guys.

[[se...]]

 

So, nearly 13 months have passed since I underwent a rapid detox from a decade-long Klonopin regimen, where I was taking about 3-4mg daily. Thankfully, many severe symptoms like tinnitus, light sensitivity, extremity numbness and night sweats have completely vanished, which is a massive relief. However, I'm still grappling with very debilitating issues including intense agoraphobia, random adrenaline surges without any apparent anxiety triggers, a persistent sense of disconnection/lightheadedness, and disturbing jolts of what feels like electricity coursing through my body just as I'm drifting off to sleep.

Before benzo withdrawal, I thrived in social settings and considered myself an extrovert. Now, the simple thought of driving spikes my anxiety, rendering me housebound and unable to visit close friends or even run simple errands. It's hellishly isolating for someone who once found joy in being out and about. As I'm sure it goes without saying, I'm not working and am deeply concerned about my future employability if my condition doesn't improve.

I've toyed with the idea of starting SSRIs or Buspar, but I've read that a nervous system sensitized by benzos might react poorly to those types of medications, leaving me feeling trapped and without options. My current therapist (of which there have been many), seems unable to grasp the nuances of benzo withdrawal and seems to treat my situation as he would treat a typical patient with anxiety.

One of my greatest fears is that I've plateaued in my recovery, facing a future where this is as good as it gets. The thought terrifies me to my core and leaves me worried that I will one day end my life over this.

I'm reaching out to you guys for your thoughts: is it realistic to hope for further improvement? Discussing this with my family often leads to dismissal, as if my condition is being overplayed for sympathy or some other insane thing. It's incredibly frustrating and lonely to confront this issue alone.

It's also worth noting that my anxiety was only ever mild to moderate before benzos. I never struggled with leaving the house, driving, sleep disturbances or adrenaline surges before rapidly tapering at the detox facility.

While I have seen significant progress since the early days of withdrawal, I'm far from feeling 'normal.' Any insights or shared experiences would be greatly appreciated.

 

[[Re...]]

Hello @[se...] and Welcome to BenzoBuddies!

I see you are suffering and I am so sorry to see that. I am myself after a rapid taper from the same amount of alprazolam. Just like you, I was on the medication for 12 years. 

It is very encouraging to see that some of your several symptoms have disappeared and you have seen improvement! It, however, might take some time for the CNS to restore these changes. The things you describe are not uncommon, and continue to resolve with time, completely. The issues you describe could have been mine exactly. 

I see people with the same problems here after a rapid taper slowly returning to their daily activities. I don't think it is possible to plateau recovery, change happens all the time, even when you really don't see it/feel it. 

I know it is hard to describe our issues to others and therapists, they will most likely never understand completely what we are going through. Being patient here is key, I am in the same shoes and decided not to push it, rather wait a litte until my system settles - it is too stressful, anyway. 

I personally decided not to take an antidepressant or medication to facilitate my own recovery. It is just my personal decision, but adding another psychiatric drug to my sensitized system would destabilize me more and I am trying to avoid that. Some people here experienced difficulties when starting new psychiatric medication. Others do benefit from them, it is all very individual. Important thing is to start with a very very small dose if you try any, and search the forum before. 

I do believe we recover seanxrod, don't feel discouraged, you are getting there!

 

[[se...]]

Thanks so much for the encouragement.

Symptoms like tinnitus being completely eradicated must be a sign that the GABA system is, to an extent, coming back online right? Otherwise I'd imagine perceptual symptoms like that would remain at the initial intensity.
I'm going to try some exposure therapy by maybe driving around the neighborhood to see if that can usher in some mental toughness.

I'm just really banking on some of these issues (particularly intense adrenaline) slowly fading out over the next year or so.

I've just read so many full-blown horror stories of people claiming they're 10-12 years out from their jump, still suffering...if that's the case I am not going to willingly live out my life in this state for that long.

Maybe I'll be one of the "lucky ones". I just want to get back to my life.

[[Ma...]]

@[se...] I can relate to just about everything you mentioned.

I haven’t seen my friends for 17+ months and I, too, was a very social person. Extremely so. I did have my 2 closest over before Christmas but my entire system lit up brighter than the tree-it was excruciating 😣.

My exposure therapy is getting my hair cut & making doctors appointments-something I could not do for over a year. Also waking into shops and the like. I don’t even recognize who I am most of the time but tell myself: Nobody knows what’s going on in your benzo-brain, benzo-mind so fake it. Just fake it-oh, and pray you don’t pass out <!>.
 

The adrenaline surges suck especially before and during sleep . I am so exhausted that every damn night I’m just like, SERIOUSLY? AGAIN? My memory is so shot, it’s like a surprise somehow. Or denial. I don’t know. But, persevere I do, as do you.

I finally found an amazing Dr with whom I have an appointment with 1 week from today. Mayo trained, 1 of 2 in country invited for fellowship at NIH, a DO, expertise in psychopharmacology and works at FDA. I might try a pharmaceutical, doubtful, but I am desperate to live my life again. And I.Am.Exhausted.

I have suggested this to many here and that is to get a gene test. It will tell you exactly what meds are correct for you and your unique system. Me? I can’t metabolize SSRI’s or Remeron. 
 

Hang in there, keep pushing it and be patient. Feel to DM me anytime.

Edited March 2 by [Ma...]

[[se...]]

@[Ma...] I really appreciate the detailed reply. Yes going out is arduous and unbelievably stressful - it kills me that I'm in this state and unable to travel around my area the way that I used to. Given that my symptoms have reduced in severity greatly, I'm holding onto hope that the remaining issues will resolve within the next year or so (maybe longer, but let's hope not). I'm sorry that you got left with such a challenging withdrawal as well.

In terms of doctors, I have been to maybe 30 in the past year and none of them have been remotely  helpful as they don't have literacy when it comes to benzodiazepines. They just claim I'm anxious despite the effort I go through to explain that these are new and very specific symptoms that I've developed during and directly after my rapid taper. It doesn't exactly take a genius to connect the dots and see that new issues are almost certainly coming from abruptly stopping such a high dose of Klonopin after being on it for so long.

As far as other medications go, I would basically try anything that isn't GABA-related if it meant that I could more closely resemble a functional person. I'm scared to try SSRIs since people say that it revs them up initially (and sometimes until they stop taking them), causing all sorts of new anxiety and nervous system problems.

Wish there was something we could do other than sit in misery wanting to die. Even cancer patients have options.

[[Ma...]]

@[se...] If 1 more Dr. tells me I have anxiety I may be arrested for my behavior. I have had anxiety since very young childhood and this ain’t that. It’s a stress response unlike anything I could phantom. Like my cells vibrate, my muscles tighten, my air hunger, just an entire collapse of the system.

Yes, SSRI’s do rev you up-probably the last thing you need. A member here told me about Trileptal, that I may try in the smallest microdose possible. Like a crumble. Google it. 
Ashton mentioned Doxepin which has a really safe profile in regards to side effects and is really effective in extremely small doses for sleep-maybe do some research on that too. Alas, my gene test says that’s not good for me. Boo.

I’m also thinking about the supplement side like 5 HTP, ugh, my brain-I have a list to ask new dr. Speaking of which, I only found her by going a different route-I called hospitals including The National Rehabilitation Hospital here. I explained my situation and asked for referrals as they’re research institutions and many go through them as opposed to 1 individual trying to make a living. Many of the doctors have PhD’s, PsyD’s and see very small numbers of private clients outside of their clinical work. Does that make sense? Maybe you can try a similar approach?

Wishing you a peaceful, restful nights sleep 😴!!

Edited March 3 by [Ma...]

[[Re...]]

On 01/03/2024 at 19:48, [[s...] said:

So, nearly 13 months have passed since I underwent a rapid detox from a decade-long Klonopin regimen, where I was taking about 3-4mg daily. Thankfully, many severe symptoms like tinnitus, light sensitivity, extremity numbness and night sweats have completely vanished, which is a massive relief. However, I'm still grappling with very debilitating issues including intense agoraphobia, random adrenaline surges without any apparent anxiety triggers, a persistent sense of disconnection/lightheadedness, and disturbing jolts of what feels like electricity coursing through my body just as I'm drifting off to sleep.

Before benzo withdrawal, I thrived in social settings and considered myself an extrovert. Now, the simple thought of driving spikes my anxiety, rendering me housebound and unable to visit close friends or even run simple errands. It's hellishly isolating for someone who once found joy in being out and about. As I'm sure it goes without saying, I'm not working and am deeply concerned about my future employability if my condition doesn't improve.

I've toyed with the idea of starting SSRIs or Buspar, but I've read that a nervous system sensitized by benzos might react poorly to those types of medications, leaving me feeling trapped and without options. My current therapist (of which there have been many), seems unable to grasp the nuances of benzo withdrawal and seems to treat my situation as he would treat a typical patient with anxiety.

One of my greatest fears is that I've plateaued in my recovery, facing a future where this is as good as it gets. The thought terrifies me to my core and leaves me worried that I will one day end my life over this.

I'm reaching out to you guys for your thoughts: is it realistic to hope for further improvement? Discussing this with my family often leads to dismissal, as if my condition is being overplayed for sympathy or some other insane thing. It's incredibly frustrating and lonely to confront this issue alone.

It's also worth noting that my anxiety was only ever mild to moderate before benzos. I never struggled with leaving the house, driving, sleep disturbances or adrenaline surges before rapidly tapering at the detox facility.

While I have seen significant progress since the early days of withdrawal, I'm far from feeling 'normal.' Any insights or shared experiences would be greatly appreciated.

It sounds like you are on a good trajectory, honestly. You are healing quickly for a CT. 13 months off after a CT is not a long time to be as healed as you are describing. I would be money that you will be even more healed at 18 months. Just hang in there. You are smart to not take any other pharmaceuticals. Clean diet can be helpful for people -- eliminate inflammatory foods, caffeine, sugar, the typical offenders, etc. Usually, the more people try to fix the withdrawal symptoms the worse they get. This was my experience. Have you considered speaking with a benzo withdrawal coach? It might be helpful. Or going to a withdrawal group like Angela Peacock's for support? Dan Landauer would be good to talk to for coaching -- he was CTd in detox. Not sure if he does groups, you can check. Super nice guy. He healed. Listen, I am in the same boat as you. I hear what you are saying about your fears and overall experience.

[[Ra...]]

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

I,m scared to try SSRIs since people say that it revs them up initially (and sometimes until they stop taking them), causing all sorts of new anxiety and nervous system problems.

Wish there was something we could do other than sit in misery wanting to die. Even cancer patients have options.

@[se...] i suggest you never ever try ssri, i am here Beacuse of ssri,s.

SSRI,s ruined my life. 

[[se...]]

17 hours ago, [[R...] said:

It sounds like you are on a good trajectory, honestly. You are healing quickly for a CT. 13 months off after a CT is not a long time to be as healed as you are describing. I would be money that you will be even more healed at 18 months. Just hang in there. You are smart to not take any other pharmaceuticals. Clean diet can be helpful for people -- eliminate inflammatory foods, caffeine, sugar, the typical offenders, etc. Usually, the more people try to fix the withdrawal symptoms the worse they get. This was my experience. Have you considered speaking with a benzo withdrawal coach? It might be helpful. Or going to a withdrawal group like Angela Peacock's for support? Dan Landauer would be good to talk to for coaching -- he was CTd in detox. Not sure if he does groups, you can check. Super nice guy. He healed. Listen, I am in the same boat as you. I hear what you are saying about your fears and overall experience.

This was lovely to read and legitimately provided me with some extra hope, so thank you. In many ways, I am absolutely lucky, as I often read about people on this forum who are fully stuck with perceptual issues like tinnitus, light sensitivity and limb-numbness as long-term symptoms, whereas my perceptual symptoms (mostly) stopped around the 6-7 month mark. I mainly feel very raw all the time and deal with stark contrasts in my overall stability from day to day. The sleep-jolts in particular are killing me and I worry greatly if that will stay long-term, since I can't really plan out my week like a normal person due to not knowing whether or not I'll get sleep on a given night (although sleep has vastly improved otherwise). I'll keep holding on to my optimism and see if things continue to improve over the course of this year.

I just hate feeling like I'm wasting some of the best years of my life right now, stagnant...I'm 30 years old, soon to be 31. I really don't want to wait until I'm in my mid to late 30s to be able to move forward with my life, get a job, etc.

Thank you again, seriously.

[[se...]]

15 hours ago, [[R...] said:

@[se...] i suggest you never ever try ssri, i am here Beacuse of ssri,s.

SSRI,s ruined my life. 

Oh believe me, the last thing I want to do is further complicate my brain chemistry with more exogenous substances. The problem is, I'm desperate for relief and just want to be get back to functioning in society, like most anyone here. I went from being out and about constantly, to being a full-blown agoraphobe who's unemployed. It's hurtful in a way that is impossible to relay with words. I have gotten so desperate that I've considered reinstating at a very low dose long term (probably forever), but I can't shake the fact that eventually, tolerance will build again and I'd be right back to where I am now, debatably worse since every subsequent withdrawal gets harder for most. I only hope that my situation doesn't transpire in a way where that's the only option left.

[[Ra...]]

4 hours ago, [[s...] said:

Oh believe me, the last thing I want to do is further complicate my brain chemistry with more exogenous substances. The problem is, I'm desperate for relief and just want to be get back to functioning in society, like most anyone here. I went from being out and about constantly, to being a full-blown agoraphobe who's unemployed. It's hurtful in a way that is impossible to relay with words. I have gotten so desperate that I've considered reinstating at a very low dose long term (probably forever), but I can't shake the fact that eventually, tolerance will build again and I'd be right back to where I am now, debatably worse since every subsequent withdrawal gets harder for most. I only hope that my situation doesn't transpire in a way where that's the only option left.

@[se...] so sorry for your sufferings. Seanxford every person is different and have diferent brain chemistry. Ssri once safe my life back in 2018.

Now I am just 23,this time Ssri totaly ruin my life. Maybe that is my badluck. Ssri gave me internal akathisia as a side effect.i don't know whether i will ever cure or not.i aslo want to enjoy my life, going back to university,spending time with friends and family, watching tv, reading books which was my hobby.but akathisia ruin everything i am totally bed bound. I am taking benzo for akathisia.I don't know when tolerance hit.

Please don't reinstate benzo again,be patient and wait more for healing. 

If you realy want to try ssri then plz do proper research and gene testing then take that poison. Everyone have different experiences, Maybe ssri does not working for me but it might work for you. 

Best wishes

[[Re...]]

6 hours ago, [[s...] said:

This was lovely to read and legitimately provided me with some extra hope, so thank you. In many ways, I am absolutely lucky, as I often read about people on this forum who are fully stuck with perceptual issues like tinnitus, light sensitivity and limb-numbness as long-term symptoms, whereas my perceptual symptoms (mostly) stopped around the 6-7 month mark. I mainly feel very raw all the time and deal with stark contrasts in my overall stability from day to day. The sleep-jolts in particular are killing me and I worry greatly if that will stay long-term, since I can't really plan out my week like a normal person due to not knowing whether or not I'll get sleep on a given night (although sleep has vastly improved otherwise). I'll keep holding on to my optimism and see if things continue to improve over the course of this year.

I just hate feeling like I'm wasting some of the best years of my life right now, stagnant...I'm 30 years old, soon to be 31. I really don't want to wait until I'm in my mid to late 30s to be able to move forward with my life, get a job, etc.

Thank you again, seriously.

I don't think anyone is "lucky" per se in this. Maybe some are more "fortunate" than others, but that term is subjective.

We all feel like we are wasting some of the best years of our lives in this state. No matter what age we are. Younger or older. The 60 and 70-year-olds on these forums feel like they are spending their golden years in drug withdrawal. The 20-year-olds feel like they are wasting their youth. I don't know if what we think we should be doing is indeed what is real. Maybe life just happens and time is an illusion. This sounds woo-woo, I know but it has been the only way I can make sense of this.

Maybe you are meant to advocate for change. Maybe I am. Maybe some of us are given unpleasant life assignments to fulfill to help other people. The issues with psych meds are urgent. The medical system is polydrugging little kids. Psych meds are responsible for so much violence in this country. If we didn't have this experience we would not be awake to this literal psych med crisis brewing just under the surface of society.

Have you taken time to research these drugs more? If you have not, I highly suggest you educate yourself because the prescription harm movement needs soldiers armed with wisdom and knowledge to pull others out of the fire and stop those who are about to get in it unknowingly.

Maybe this time is some sore of spiritual arrival. Some of the biggest names in history have gone through horrific suffering. We just never know what purpose could come out of this cursed chaos.

I think of Viktor Frankl. He was put in concentration camps at 37 years old during the Holocaust. He spent three years there. He lost his father, brother, mother, and wife. He lost his life work and had to try to reconstruct it. That was all taken from him. He wrote Man’s Search for Meaning in nine days. It became an international bestseller. Still today, decades later, it is a bestselling book. Now if he didn't go through the three years in a camp the book would not have been written to change millions of people's lives. Out of the 39 books he wrote that one he wrote after the camp became the most popular.

I am not comparing us to holocaust survivors. We do not even begin to know their pain or suffering and what they endured. (Although akathisia was induced during the Holocaust as a form of torture.) We are enduring our own top-line trauma just like those who experience war do or survive an airplane crash. It is different and it is ours. We did not choose this, it chose us. All most of us did was follow doctors' directions.

I am not saying things are meant to be I just question why some people are given greater suffering. Maybe there is something you can do to channel your suffering. Maybe it isn't all for waste. I do not know. Nobody can say for sure why things happen as they do. Perhaps we are all just at the hands of the human condition and life on life's terms.

Maybe you can start working to change this system from your living room. If you haven't listened to Dr. Mark Horowitz, do it. If you haven't seen Medicating Normal, do it. If you haven't read Robert Whitaker's book, do it. Check out Dr. Josef Witt-Doerring's information. Watch Dr. Jenn, Angela Peacock, Matt Marin, and Melissa Boutilier's videos. It will protect you as much as it will educate you. It worries me that you think that maybe drugs might be your only option if you do not heal on an expected timeline. That is like saying I am allergic to peanuts but if I get hungry and there is no other food around, I am going to eat them.

Start to speak up for those of us who are sicker than others and cannot tell our stories. Write an article for Mad in America. Start a YouTube if you can to tell people what you are going through.

Make people hear you, hear us. Make waves.

In other words, there are many things you can do with your time if you can do them and your physical symptoms are such that it allows for that. It seems you might be in this place.

This could change the trajectory of your life if you let it. Some people become nurses or functional doctors, psych med withdrawal coaches, and more to implement much-needed systemic change and save other people from harm.

If Victor Frankl can pick up the pieces of his life and move forward then so can we. 

 

 

 

Edited March 4 by [Re...]

[[se...]]

5 hours ago, [[R...] said:

I don't think anyone is "lucky" per se in this. Maybe some are more "fortunate" than others, but that term is subjective.

We all feel like we are wasting some of the best years of our lives in this state. No matter what age we are. Younger or older. The 60 and 70-year-olds on these forums feel like they are spending their golden years in drug withdrawal. The 20-year-olds feel like they are wasting their youth. I don't know if what we think we should be doing is indeed what is real. Maybe life just happens and time is an illusion. This sounds woo-woo, I know but it has been the only way I can make sense of this.

Maybe you are meant to advocate for change. Maybe I am. Maybe some of us are given unpleasant life assignments to fulfill to help other people. The issues with psych meds are urgent. The medical system is polydrugging little kids. Psych meds are responsible for so much violence in this country. If we didn't have this experience we would not be awake to this literal psych med crisis brewing just under the surface of society.

Have you taken time to research these drugs more? If you have not, I highly suggest you educate yourself because the prescription harm movement needs soldiers armed with wisdom and knowledge to pull others out of the fire and stop those who are about to get in it unknowingly.

Maybe this time is some sore of spiritual arrival. Some of the biggest names in history have gone through horrific suffering. We just never know what purpose could come out of this cursed chaos.

I think of Viktor Frankl. He was put in concentration camps at 37 years old during the Holocaust. He spent three years there. He lost his father, brother, mother, and wife. He lost his life work and had to try to reconstruct it. That was all taken from him. He wrote Man’s Search for Meaning in nine days. It became an international bestseller. Still today, decades later, it is a bestselling book. Now if he didn't go through the three years in a camp the book would not have been written to change millions of people's lives. Out of the 39 books he wrote that one he wrote after the camp became the most popular.

I am not comparing us to holocaust survivors. We do not even begin to know their pain or suffering and what they endured. (Although akathisia was induced during the Holocaust as a form of torture.) We are enduring our own top-line trauma just like those who experience war do or survive an airplane crash. It is different and it is ours. We did not choose this, it chose us. All most of us did was follow doctors' directions.

I am not saying things are meant to be I just question why some people are given greater suffering. Maybe there is something you can do to channel your suffering. Maybe it isn't all for waste. I do not know. Nobody can say for sure why things happen as they do. Perhaps we are all just at the hands of the human condition and life on life's terms.

Maybe you can start working to change this system from your living room. If you haven't listened to Dr. Mark Horowitz, do it. If you haven't seen Medicating Normal, do it. If you haven't read Robert Whitaker's book, do it. Check out Dr. Josef Witt-Doerring's information. Watch Dr. Jenn, Angela Peacock, Matt Marin, and Melissa Boutilier's videos. It will protect you as much as it will educate you. It worries me that you think that maybe drugs might be your only option if you do not heal on an expected timeline. That is like saying I am allergic to peanuts but if I get hungry and there is no other food around, I am going to eat them.

Start to speak up for those of us who are sicker than others and cannot tell our stories. Write an article for Mad in America. Start a YouTube if you can to tell people what you are going through.

Make people hear you, hear us. Make waves.

In other words, there are many things you can do with your time if you can do them and your physical symptoms are such that it allows for that. It seems you might be in this place.

This could change the trajectory of your life if you let it. Some people become nurses or functional doctors, psych med withdrawal coaches, and more to implement much-needed systemic change and save other people from harm.

If Victor Frankl can pick up the pieces of his life and move forward then so can we. 

@[Re...] A very thought out reply. I I can't dispute anything I've read so far.

Unfortunately I am fatally aware of the mechanisms by which benzos work, as well as the resulting adaptations our bodies go through due to the presence of the drug. In fact, my girlfriend and a couple of my close friends have mentioned that I may have gotten too obsessive and hyper-aware of benzo related pharmacology and that I should really slow down. To an extent, I agree with them...at least in terms of not putting any further stress on my mental health. 

I've heard of about half of those names you mentioned, the others I'll have to look into.

I also agree that maybe some of us have been put in this position to eventually help guide others/bring aware to these issues, however I feel as though I'd only be able to help in a meaningful capacity once my own personal suffering has been reduced from where I am now - I'm essentially just surviving most days with no certainty of what the next day will be like.

Thankfully, after spending some time reading on BB, I see my healing as a legitimate possibility. I will will admit, though, that I get pretty wigged out when I see people 10-12 years out claiming they're still struggling or barely healing - I'm assuming these are either worst-case-scenario outliers or people who might be mistaking other health issues for benzo issues. I can't blame them for the latter though, this whole ordeal is legitimately traumatizing.