Why is the second year harder than the first?

[Guest [...]]

I haven't posted in a very long not feeling that I could positively contribute to a discussion on healing..........but, here's where I am at now.........

 

In my first year, I felt that I had experienced healing, could quantify improvements and be certain that I was healing with time.  Now, I am not so sure.  My thoughts have gone in other directions than, "we all heal". 

Like Tweed and Sundance, all my symptoms are all neuromuscular in origin with the intense pain cycles specifically tethered to sleep and hormone cycles.  And, not a single physician I have approached and worked with has understood the exact origin of this pain.  I have searched the globe for answers: John Hopkins, University of Arizona physicians currently studying iatrogenic benzodiazepine injury, McLean Hospital in MA, Mayo Clinic, several top physicians in LA and Chicago and several others in the US and in Canada.  I've thoroughly exhausted both the traditional medical model and holistic providers focused on methylation, genetic testing, liver pathway issue, cellular wall dysfunction, nutrition, nutritional deficiency and a whole host of other esoteric and fringe "diseases" or sensitivities or metabolic/genetic weaknesses and sex hormone irregularities that may elucidate the origin of this pain.  Nothing. 

 

I've thoroughly explored immune response or lack of, rheumatology, pheochromocytoma, and other HPA axis dysregulation and dysfunction issues and, though two physicians believed that HPA axis dysfunction to be the possible origin of my pain, neither could accurately capture through blood work or imaging or repeatedly quantify and expose the exact nature of the pain cycle and how to repair the injury.  And, all the suggestions to mitigate this "unacceptable and unheard of" pain in the absence of the origin have been pharmacological: Lyrica,gabapentin, CBD, LD naltrexon, depakote, ketamine, beta blockers, methocarbamol for starters.  With the exception of the advice from one pharmacologist, who suggested a nerve root simulator given my less than optimal liver enzyme response (a known genetic issue), all roads have pointed to polypharmacy. 

 

I am exhausted from the effort that began in 2012 with my first attempt at a direct withdrawal from klonopin with many "mistakes" and CNS injuries along the way from misguided but well intentioned physicians in the traditional medical model with an entirely poor understanding of the mechanism of injury for those of us genetically predisposed or vulnerable to this class of drugs.  All along I hoped that once off the CNS and endocrine disrupting drugs that my body would be able to find a way back to homeostasis and wellness.  Maybe that's down the pipline in time and the answer is in the future, and I certainly hope that to be the case, but my belief has waned and I add my voice to those questioning a "healthy" future post benzo withdrawal for those highly symptomatic during a ridiculously slow micro taper off a small dose of benzodiazepine.

 

Ss

 

I am so happy to see you back. I wondered how you were getting on and I actually assumed you were thriving.

 

I can relate to every word of your post. When I first went into this journey I was relatively enthusiastic and optimistic about my healing. As time has gone by and the months have passed OFF the drug after a long slow micro taper, I also question whether I will actually heal now. I see others cold turkeying multiple drugs after DECADES of use healing already or even already healed. Yet I am getting worse after short term daily use of a low dose of Valium and a slow micro taper. I no longer believe in slow tapering for some of us. I believe slow tapering fucked me up even more. I believe it sensitised my already broken CNS even more and actually caused way more damage and also exposed my body to a toxic drug for far too long. I think this “slow taper is the only way” is bullshit. For some of us the drugs are the problem. It doesn’t seem to matter what we do, we are fucked either way. I am worse than so many cold turkeys I have seen yet I tapered so slow? How does that make sense?

 

The truth is nobody knows the answer to any of this. Nobody knows what these drugs even do to our bodies long term. Nobody knows anything. It’s all speculation.

 

All I can say is, most people do seem to improve over time, even severe cases. For some it seems to take a very very long time and I fear that will be the case for me judging on my horrific prolonged experience so far. I am not negative, I am not talking myself into protracted withdrawal, I am being realistic based on my experience since being off the drug. It has been pure HELL. I have remained positive throughout my whole taper and withdrawal yet I am only getting worse. This is nothing to do with mindset. It’s to do with severe severe damage to my entire nervous system from these evil drugs. I know my story must be very triggering to many starting this journey Because to be honest I would be scared as hell reading about somebody who did EVERYTHING right in terms of taper, diet, no alcohol etc yet is only getting worse as time goes by. But sadly this is my reality and I can’t hide from everyone. I have literally tried so hard to keep positive but I also question the “everyone heals” now. I’m not so sure. How can we know that if we don’t even know what the drugs have done? It’s all speculation so I just don’t know anymore.

 

I pray that we all begin to heal and feel better soon. That’s all we can hope for. At least we have each other in the meantime.. ❤️

 

Tweed, so good to connect again.    I've silently kept in touch reading your blog reports and desperately waited for your days to improve and to NOT be my experience........

 

I agree with your comments regarding slow micro tapering for those of us highly sensitized simply prolonging the unwanted exposure to a cns toxic agent.  That definitely was my experience post rapid removal and subsequent reinstatement. I also believe that sharing this harsh reality is vital for the small percentage of us experiencing this extreme response.  I vividly recall when I first arrived on BB feeling immensely alone and afraid to share how horrid my symptoms actually were/are given the paucity of people relating to "electrocution when sleeping, with menstrual cycles, during the liminal stage of sleep etc" all the while doing all the purportedly correct things.  For a percentage of us, doing the "right taper technique, diet, exercise/no exercise, meditation, etc" will only mitigate the pain enough to get off the drug.  Then, off is an entirely separate situation and fresh kind of Hell.........

 

Tweed, I am thankful for your candid sharing of your experience and know that it is not done from a lack of mental positivity.  You have over and over demonstrated your courageous and positive mindset accepting of all the suffering required for you to remove valium from your body. 

 

I have people in my face to face life that have stopped and started benzos repeatedly at doses significantly higher than what I was on and with other pysch medications in the mix over an extended period of time all without injury and the long term disability and suffering I have experienced.  They simply hurt for a few weeks then felt good and moved on with their lives.  Science simply does not understand why, at this point. 

 

I'm also clinging to those ahead that report substantial and noticeable improvements down the road and pray that we all will experience similarly.  Until then, irrespective of mindset, I'll continue slithering through each day with a myriad of muscle and bone mangling pain that simply is off the medical communities radar.............

 

sending much love and compassion, Tweed and everyone else suffering this extensively

[Guest [...]]

I haven't posted in a very long not feeling that I could positively contribute to a discussion on healing..........but, here's where I am at now.........

 

In my first year, I felt that I had experienced healing, could quantify improvements and be certain that I was healing with time.  Now, I am not so sure.  My thoughts have gone in other directions than, "we all heal". 

Like Tweed and Sundance, all my symptoms are all neuromuscular in origin with the intense pain cycles specifically tethered to sleep and hormone cycles.  And, not a single physician I have approached and worked with has understood the exact origin of this pain.  I have searched the globe for answers: John Hopkins, University of Arizona physicians currently studying iatrogenic benzodiazepine injury, McLean Hospital in MA, Mayo Clinic, several top physicians in LA and Chicago and several others in the US and in Canada.  I've thoroughly exhausted both the traditional medical model and holistic providers focused on methylation, genetic testing, liver pathway issue, cellular wall dysfunction, nutrition, nutritional deficiency and a whole host of other esoteric and fringe "diseases" or sensitivities or metabolic/genetic weaknesses and sex hormone irregularities that may elucidate the origin of this pain.  Nothing. 

 

I've thoroughly explored immune response or lack of, rheumatology, pheochromocytoma, and other HPA axis dysregulation and dysfunction issues and, though two physicians believed that HPA axis dysfunction to be the possible origin of my pain, neither could accurately capture through blood work or imaging or repeatedly quantify and expose the exact nature of the pain cycle and how to repair the injury.  And, all the suggestions to mitigate this "unacceptable and unheard of" pain in the absence of the origin have been pharmacological: Lyrica,gabapentin, CBD, LD naltrexon, depakote, ketamine, beta blockers, methocarbamol for starters.  With the exception of the advice from one pharmacologist, who suggested a nerve root simulator given my less than optimal liver enzyme response (a known genetic issue), all roads have pointed to polypharmacy. 

 

I am exhausted from the effort that began in 2012 with my first attempt at a direct withdrawal from klonopin with many "mistakes" and CNS injuries along the way from misguided but well intentioned physicians in the traditional medical model with an entirely poor understanding of the mechanism of injury for those of us genetically predisposed or vulnerable to this class of drugs.  All along I hoped that once off the CNS and endocrine disrupting drugs that my body would be able to find a way back to homeostasis and wellness.  Maybe that's down the pipline in time and the answer is in the future, and I certainly hope that to be the case, but my belief has waned and I add my voice to those questioning a "healthy" future post benzo withdrawal for those highly symptomatic during a ridiculously slow micro taper off a small dose of benzodiazepine.

 

Ss

 

I am so happy to see you back. I wondered how you were getting on and I actually assumed you were thriving.

 

I can relate to every word of your post. When I first went into this journey I was relatively enthusiastic and optimistic about my healing. As time has gone by and the months have passed OFF the drug after a long slow micro taper, I also question whether I will actually heal now. I see others cold turkeying multiple drugs after DECADES of use healing already or even already healed. Yet I am getting worse after short term daily use of a low dose of Valium and a slow micro taper. I no longer believe in slow tapering for some of us. I believe slow tapering fucked me up even more. I believe it sensitised my already broken CNS even more and actually caused way more damage and also exposed my body to a toxic drug for far too long. I think this “slow taper is the only way” is bullshit. For some of us the drugs are the problem. It doesn’t seem to matter what we do, we are fucked either way. I am worse than so many cold turkeys I have seen yet I tapered so slow? How does that make sense?

 

The truth is nobody knows the answer to any of this. Nobody knows what these drugs even do to our bodies long term. Nobody knows anything. It’s all speculation.

 

All I can say is, most people do seem to improve over time, even severe cases. For some it seems to take a very very long time and I fear that will be the case for me judging on my horrific prolonged experience so far. I am not negative, I am not talking myself into protracted withdrawal, I am being realistic based on my experience since being off the drug. It has been pure HELL. I have remained positive throughout my whole taper and withdrawal yet I am only getting worse. This is nothing to do with mindset. It’s to do with severe severe damage to my entire nervous system from these evil drugs. I know my story must be very triggering to many starting this journey Because to be honest I would be scared as hell reading about somebody who did EVERYTHING right in terms of taper, diet, no alcohol etc yet is only getting worse as time goes by. But sadly this is my reality and I can’t hide from everyone. I have literally tried so hard to keep positive but I also question the “everyone heals” now. I’m not so sure. How can we know that if we don’t even know what the drugs have done? It’s all speculation so I just don’t know anymore.

 

I pray that we all begin to heal and feel better soon. That’s all we can hope for. At least we have each other in the meantime.. ❤️

 

Tweed, so good to connect again.    I've silently kept in touch reading your blog reports and desperately waited for your days to improve and to NOT be my experience........

 

I agree with your comments regarding slow micro tapering for those of us highly sensitized simply prolonging the unwanted exposure to a cns toxic agent.  That definitely was my experience post rapid removal and subsequent reinstatement. I also believe that sharing this harsh reality is vital for the small percentage of us experiencing this extreme response.  I vividly recall when I first arrived on BB feeling immensely alone and afraid to share how horrid my symptoms actually were/are given the paucity of people relating to "electrocution when sleeping, with menstrual cycles, during the liminal stage of sleep etc" all the while doing all the purportedly correct things.  For a percentage of us, doing the "right taper technique, diet, exercise/no exercise, meditation, etc" will only mitigate the pain enough to get off the drug.  Then, off is an entirely separate situation and fresh kind of Hell.........

 

Tweed, I am thankful for your candid sharing of your experience and know that it is not done from a lack of mental positivity.  You have over and over demonstrated your courageous and positive mindset accepting of all the suffering required for you to remove valium from your body. 

 

I have people in my face to face life that have stopped and started benzos repeatedly at doses significantly higher than what I was on and with other pysch medications in the mix over an extended period of time all without injury and the long term disability and suffering I have experienced.  They simply hurt for a few weeks then felt good and moved on with their lives.  Science simply does not understand why, at this point. 

 

I'm also clinging to those ahead that report substantial and noticeable improvements down the road and pray that we all will experience similarly.  Until then, irrespective of mindset, I'll continue slithering through each day with a myriad of muscle and bone mangling pain that simply is off the medical communities radar.............

 

sending much love and compassion, Tweed and everyone else suffering this extensively

 

So much love for you and this post, you truly understand. Thank you. I also cling onto hope from those further along than me.. it’s very specific what I cling onto now though. I am now triggered by the stories that used to give me hope. It’s crazy how this changes even in our own journeys.

 

I am happy for those healing quickly but it also hurts so bad when I know how much I am suffering. Why me? I keep asking this question.

 

Are you still able to work part time etc? Did you hear back from James Wright?

 

Love to you friend, so good to hear from you again, although I wish it was better news of course 💖

 

Tweed, several weeks ago I had to stop all but the writing portion of my job where I can be at home and navigate around my torturous mornings.  I'm thankful that I had that as an option.......

 

I have not heard back from Dr. Wright.  Thanks for asking and reminding me to follow up with a second inquiry.  I will let you know when and if he replys......

 

[[...]]

The only true healing root to the gaba receptor repair over time so eventually the glutamate will be regulated. While during this painful and long process, the best we can do is to protect the brain from damage by lowering the glutame level, such  as not eating glutamate high food, avoid harmful chemicals, avoid stress, and most importantly avoid alcohol which can Kindle the brain just like reinstating benzo

[[le...]]

The glutamate theory really makes sense. I keep thinking why when I have tried everything various therapies nothing helps just getting worse, yet they obviously work so well for lot of other people and they recover lot quicker. Does give me hope other feel like this as hard to stay positive at times. Does seem we do all recover at different rates and what works well for one person doesn't for another which makes you there is some reason for it.

[[le...]]

Was reading an archived post that said said celexa lowers the amount of glutamate in your brain so when you come off it tends to raise so can make you feel lot worse and everything is out of litter. Having come off celexa would explain why I feel like life not worth living last week or so  So Sundance post about excess of glutamate seems to really resonate

[[Ma...]]

As we've all heard a thousand times, healing is not linear. I'm at 2.5 years and yes, I feel way lousier than I did at the top of all this, but it's not my first rodeo, so I know it's my pattern. Just because you feel worse, doesn't mean you're not better. Yeah, weird one, but fact. How you feel is not a reflection of where you are in the process. And this stuff can turn on a dime. I've now been around long enough to say that I've seen it. It's pointless to preach, but it's worth saying, because from personal experience and watching the progression of others, I have only one piece of advice that I have seen make a real difference: don't drink. That's mine. I'm not a big drinker anyway, but it hits the same receptors and slows healing down massively. I can't believe how much better I feel having that piece this time around. The advice I've been given, which makes perfect sense if you think about it, is don't add anything that helps. If weed helps, stop using it. If Magnesium helps, well, I wouldn't. Anything that carries some of the burden for you (helps), hinders. Sure, we all want to feel better, but more than that, we all want to put this behind us. So yeah, we grit our teeth, we bear down, we educate ourselves as to what is withdrawal, and we bravely put one foot in front of the other. The good part is, I don't have to figure this out. I just have to follow that simple plan till I feel like myself again, however long that takes.

[[le...]]

Just out of interest did you try magnesium? Bit wary trying things but exploring the excess glutamate theory, and says it can help expell any excess glutamate in the brain which is acssociated with OCD symptoms?

[[tr...]]

Marina..

[[Do...]]

Marina, Your post had some good advice and that is to stay away from alcohol.  But many people may be lacking in minerals and other vitamins where it is necessary that they supplement.  I had to because I was so mal-nourished from the c/t.  I was careful and used liquid supplements so I could use the lowest possible dosage. 

 

I found magnesium to be the only thing to help with the severe muscle cramping.  It saved me.  The cramping was excruciating.  I don't think I needed to stop taking magnesium because it provided some relief.  That's crazy.  You are telling people that if something is reducing sxs, stop doing it.

 

If exercise works for you, keep doing it.  If eating a certain type of diet reduces sxs, keep doing that too.  Do what works.  Everyone is so different.  We have to find our way without being fearful of drinking a cup of tea.

 

 

 

[[Pt...]]

I think it depends on the individual.

 

Some supplements hit the gaba receptors which seem to help symptoms initially but then come back to bite u later on.

 

I agree with marina in basically staying away from everything unnatural and even natural things that causse my symptoms to rev up. Who knows what’s in supplements. For all I know they’re manufactured with even less regulation and oversight than prescription drugs.

[[le...]]

Would you advise staying away from supplements then. Must say anything J've tried so far seems rev up symptoms. Does depress me a bit when reading about people who have improved withing a year even though I'm obviously glad for them. Sometimes wonder had I been able to taper might been different story.

[[Aj...]]

Glial cell activation.