Just going to say it.

Withdrawal causes severe illness and damage in some ppl and they never recover.

 

Receptors upregulate very quickly - receptor dysregulation is not the problem.

 

A lot of p develope Mast  Cell Activation and other immune system and autoimmune illnesses as a result of withdrawal.

 

Some ppl develop something indistinguishable from ME/CFS.

 

Calling these things WD is wrong and gives a false impression that that will miraculously disappear without treatment or at all.

 

 

Withdrawal causes severe illness and damage in some ppl and they never recover.

 

Receptors upregulate very quickly - receptor dysregulation is not the problem.

 

A lot of p develope Mast  Cell Activation and other immune system and autoimmune illnesses as a result of withdrawal.

 

Some ppl develop something indistinguishable from ME/CFS.

 

Calling these things WD is wrong and gives a false impression that that will miraculously disappear without treatment or at all.

 

I am sorry this has happened to you. 

Withdrawal causes severe illness and damage in some ppl and they never recover.

 

Receptors upregulate very quickly - receptor dysregulation is not the problem.

 

A lot of p develope Mast  Cell Activation and other immune system and autoimmune illnesses as a result of withdrawal.

 

Some ppl develop something indistinguishable from ME/CFS.

 

Calling these things WD is wrong and gives a false impression that that will miraculously disappear without treatment or at all.

Well I agree that downregulation of GABA_A receptors isn't the cause of these symptoms. Otherwise setbacks couldn't exist. How can someone who was otherwise fine get thrown into acute benzodiazepine discontinuation syndrome by intense physical excercise? He can't, GABA_A receptors won't just spontaneously downregulate themselves. However, we know that tribulin, which is excreted during acute stress and intense physical activity acts as BZD-site inverse agonist (much like antibiotics). In some cases the problem may be un-coupling of BZD-sites from GABA_A receptors, but the problems appear to be elsewhere, maybe upregulation of benzodiazepine-insensitive α4 and α6 subunit containing GABA_A receptors (which might lead to normally GABA_A PAM neurosteroids acting paradoxically as GABA_A NAMs). Most likely it's HPA-axis dysregulation, and most of all upregulation and sensitization of glutamate receptors. My conjecture is that all of this leads to some form of autonomic dysregulation, a positive feedback loop, which can hardly unlatch on its own.

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

 

Thats not strange thats logical. First the adrenal glands react to stress with a huge release of cortisol. With time and chronic stress, they cannot produce this high amount anymore and the result are weak adrenal glands. And then the levels of cortisol, DHEA and all the other hormones which are produced from this organ are very very low. Normally depression is related to low cortisol, not high cortisol. Thats the kind of depression which comes with fatigue.

I try to avoid unusual diagnoses. It just makes me worried, and Dr. Google has only made it worse. After 5 years of suffering, I think my inner stress and anxiety create a lot of problems. And I have read articles; "Ongoing, chronic stress can cause or exacerbate many serious health problems."

 

According to a report by the American Psychological Association, "long-term stress weakens the responses of your immune system. That's because stress decreases the body's lymphocytes, the white blood cells, that help fight off infection."

 

Dr. Laderoute has published the new immunosenescence (immune aging) paradigm, where it has been suggested that "stress can induce immunosenescence. And that causes many chronic illnessess."

 

 

Withdrawal causes severe illness and damage in some ppl and they never recover.

 

Receptors upregulate very quickly - receptor dysregulation is not the problem.

 

A lot of p develope Mast  Cell Activation and other immune system and autoimmune illnesses as a result of withdrawal.

 

Some ppl develop something indistinguishable from ME/CFS.

 

Calling these things WD is wrong and gives a false impression that that will miraculously disappear without treatment or at all.

Well I agree that downregulation of GABA_A receptors isn't the cause of these symptoms. Otherwise setbacks couldn't exist. How can someone who was otherwise fine get thrown into acute benzodiazepine discontinuation syndrome by intense physical excercise? He can't, GABA_A receptors won't just spontaneously downregulate themselves. However, we know that tribulin, which is excreted during acute stress and intense physical activity acts as BZD-site inverse agonist (much like antibiotics). In some cases the problem may be un-coupling of BZD-sites from GABA_A receptors, but the problems appear to be elsewhere, maybe upregulation of benzodiazepine-insensitive α4 and α6 subunit containing GABA_A receptors (which might lead to normally GABA_A PAM neurosteroids acting paradoxically as GABA_A NAMs). Most likely it's HPA-axis dysregulation, and most of all upregulation and sensitization of glutamate receptors. My conjecture is that all of this leads to some form of autonomic dysregulation, a positive feedback loop, which can hardly unlatch on its own.

 

Interesting; I’ve been exploring the HPA axis aspect and hyperstimulation as a cause for ongoing symptoms. I’ve been off 13 years.

I don’t think it has to be a feedback loop though; I believe there is a way out using cognitive behavioral therapy, reprogramming the brain. Practicing mindfulness and deep relaxation is also key to bringing the hyperstimulation down.

The brain has a capacity for changing and adapting i.e neuroplasticity. I’m hopeful this work will produce positive results over time.

I should add that I’m much better now than previous years; I’m able to function despite lingering symptoms.

 

Yes, I think what’s being said and discussed here relevant.

 

I’m not sure how much choice there is when someone is constantly stressed due to circumstances they can’t control, however Pedro. Like for instance financial hardship, fairly difficult for someone exceptionally strained to pull out of stress feedback loops and apply cognitive behavioral therapy in some cases I think. I’m not suggesting it isn’t worth trying and applying cbt, or pursuing and undergoing effective trauma therapy say, I just feel like therapy on its own doesn’t necessarily solve things.

 

This is a valuable topic, I wanted to reply so I could find it again more easily and read new replies.

 

Thank you for posting, Ajusta.

Can this affect the respiratory center? I constantly forget to breathe, and even more stress in the body.

Some references to back up some of the statements here would be nice.

Some references to back up some of the statements here would be nice.

MnemonicLife is a biochemist and he did a lot of reading on GABA side of things:

http://www.benzobuddies.org/forum/index.php?action=profile;u=36882;area=showposts;start=0

But recently many of us came to believe it's more about glutamate receptors, than GABA_A receptors, given that GABA_A receptor downregulation hypothesis cannot explain the mecanism of setbacks. And besides some people who were given antibiotics develop symptoms similar to benzodiazepine withdrawal, despte never taking benzos, and antibiotics being inverse agonists aren't going to cause downregulation of GABA_A receptors (quite the contrary, in fact).

http://pubmed.ncbi.nlm.nih.gov/18924138/

http://pubmed.ncbi.nlm.nih.gov/17510319/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5766724/

http://www.pnas.org/content/98/6/3483

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175508/

following. 

I’m sorry but I would not be taking the advice of an addict that was on up to 16mg of Xanax a day. Anyone here can tell you they’re a biochemist.

What advice? He has linked to many papers on GABA_A receptors, which you can read for yourself. He simply quoted parts of them.

Some references to back up some of the statements here would be nice.

MnemonicLife is a biochemist and he did a lot of reading on GABA side of things:

http://www.benzobuddies.org/forum/index.php?action=profile;u=36882;area=showposts;start=0

But recently many of us came to believe it's more about glutamate receptors, than GABA_A receptors, given that GABA_A receptor downregulation hypothesis cannot explain the mecanism of setbacks. And besides some people who were given antibiotics develop symptoms similar to benzodiazepine withdrawal, despte never taking benzos, and antibiotics being inverse agonists aren't going to cause downregulation of GABA_A receptors (quite the contrary, in fact).

http://pubmed.ncbi.nlm.nih.gov/18924138/

http://pubmed.ncbi.nlm.nih.gov/17510319/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5766724/

http://www.pnas.org/content/98/6/3483

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175508/

I’m sorry but I would not be taking the advice of an addict that was on up to 16mg of Xanax a day. Anyone here can tell you they’re a biochemist.

 

That counts out the rest of the BenzoBuddies population, all of us having been on benzodiazepines or we would not be here.

 

 

I find it odd that MnemonicLife cold turkeyed off of many years of high doses of X, made 70 posts, most to various research websites, and then disappeared a few months after going C/t in 2015, and hasn't been back since. I'm sure I'm not the only one wondering how he's doing 5 years later after his C/T of massive doses of X. Heck, he rarely ever posted about his experience at all.

 

I don't know if MnemonicLife was an addict, but I've met at least one poster on this board who has developed an addiction to Valium, and has  stated in a post they were buying it illegally off the internet, and has more than doubled the dose presribed by their doctor (and is likely worried what the doctor would do if they found out), so this person came here for help because they realize rtheir V use is spiralling out-of-control.  They came for tapering advice. But when they couldn't handle the taper, they turned to rescue doses, and it's been a drain educating them, but I see others as well as myself trying, and I think they are starting to get it, because members are getting through to them. Though V isn't usually the choice for addiction, while X (Xany Bars as they call them on the street) is.

 

I just don't think we should dismiss someone because they developed an addiction. Before I tapered off of over 20 years of prescribed opiate use for chronic intractable pain (I did so because of a great MD who did RFA to end my pain), I found a forum for opiate W/D and it was a mix of people like me wanting to get off of prescribed opiates and addicts who were tired of the rehab Merry-go-Round who wanted to finally get their lives back without relying on Methadone or Suboxone. That forum was a great source of help to me. Many off the addicts started off with prescription pain medicine, and things spiraled downwards after. They didn't start as addicts, and possibly MnemonicLife didn't either. If someone can link to his story where he states this, than I have a source for the comment.

 

My point is we should help anybody who finds their way here, whether dependent or addicted. Some of the addicts have reached the end of their rope, are getting no help from so-called 'rehab', if they have the discipline and drive to taper we should help them, but realize some will be resistant and possibly give up.

 

 

 

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

 

I have been diagnosed with mastocytosis caused by withdrawal.

That and the severe muscle contracture has caused severe degeneration through my spine that I didn’t have last year. My skull has collapsed on to my neck, I have Craniocervical Instability. It is pressing on my brainstem. My jaw is ducked because of it.The twisting  and dystonia has caused scar tissue to build up around my surgery site which has caused my spinal cord to tether.

 

I need to have fusion surgery through my whole neck and my skull fixed to it with rods and my spinal cord untethered. They don’t do this on the uk. I need to raise £200k to go to Spain for surgery to literally save my life. To stop me being internally decapitated.

 

I can!t have surgery because no drugs work properly bow.

 

So Translator, as I have told you before quoting Ashton and telling me this is WD is ******* insulting.

 

You are not supposed to respond to my posts.

 

 

Edit: Profanity Removed:

 

 

 

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

 

I have been diagnosed with mastocytosis caused by withdrawal.

That and the severe muscle contracture has caused severe degeneration through my spine that I didn’t have last year. My skull has collapsed on to my neck, I have Craniocervical Instability. It is pressing on my brainstem. My jaw is ducked because of it.The twisting  and dystonia has caused scar tissue to build up around my surgery site which has caused my spinal cord to tether.

 

I need to have fusion surgery through my whole neck and my skull fixed to it with rods and my spinal cord untethered. They don’t do this on the uk. I need to raise £200k to go to Spain for surgery to literally save my life. To stop me being internally decapitated.

 

I can!t have surgery because no drugs work properly bow.

 

So Translator, as I have told you before quoting Ashton and telling me this is WD is insulting.

 

You are not supposed to respond to my posts.

 

 

Ajusta. Had I written your name, or mentioned you? NO. Just Ashtons manual. Everything is not about you, I discussed with others.

 

"Telling me this is WD is ******* insulting." I have no clue what you are talking about. Please, calm down!

 

 

I've never questioned your problems, so I don't understand why you are writing this.

 

Am I told to avoid you? No, it’s the opposite, and we have discussed that before. You had written in my blog. Don't you remember the message from a moderator? You called me a bitch. Thanks, and enough about that. 

 

 

 

Edit: Profanity Removed:

 

This post scares the living life out of me.  Now I’m praying harder for healing tonight. I sound like a religious zealot - I’m not.  Just a desperate girl at the end of her rope of patience 12 months since  jumping.  1 month in tolerance w/d.  God I wish I’d never set eyes on any benzo.

Another interesting paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2975185/

This post scares the living life out of me.  Now I’m praying harder for healing tonight. I sound like a religious zealot - I’m not.  Just a desperate girl at the end of her rope of patience 12 months since  jumping.  1 month in tolerance w/d.  God I wish I’d never set eyes on any benzo.

 

Bess55,

 

If what you read here scares you I would strongly suggest you avoid it. The OP has other health issues and I have seen nothing that supports with research the claim that mastocytosis is caused by benzo withdrawal.

 

I also have cervical spine issues, I was fused from C5-7 in 2009 due to nerve damage at that level. I have a very bad shoulder due to a severely torn rotator cuff and failed first surgery. While these things are difficult to deal with, withdrawal had no part in them and withdrawal did not affect them in any way. 

 

I healed completely and totally even while having these other problems. 

 

pianogirl 

I think what is important here is to understand that some patients are left in terrible situations after coming off the drugs.  Whether there are other health related issues or not, staying on the drugs might have been the better option in certain cases.  For those who cannot recover, compassion is paramount, because the despair felt when there is no hope is really quite unbearable.  The focus should be on the unbearable situation of the opening poster and nothing else.  I doubt many of us here would have strength to cope in the same situation, because it is an extreme situation.

What Fiona (lookingforward) has said is very important. That’s not my opinion, it’s factual. There are people whose lives are more severely damaged for lengthier periods of time and these drugs have played a role, period.

 

The majority, it seems, recover. We have no way of knowing really, though, because all there is for us is this website and maybe a Facebook/some Facebook groups.

 

Eventually there will have to be more acceptance, support and validation for those of us who were impacted more significantly than many others. Ajusta is one of these, and isn’t it this forum itself who says that doctors are necessary and play a role, that we should not discard them (entirely) or be against them? I doubt Ajusta is lying about what her doctor said.

 

Which doctors, where are we supposed to believe, and when should we believe them? To completely sideline the issue that there are people maimed by these drugs who do no spring back into well-adjusted, full-health is a crime.

 

After seeing these boards long enough, anyone should have a better idea of what benzodiazepines are capable of, and they have given them to children now. No one knows the full mechanistic capacities of these pills, let alone the true impact they have when we assume they have done no damage.

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

 

Ditched benzos (see date in sig)

 

Cortisol test: 7/30/2020 @ 3:49pm

 

AM Range:  6.2 - 19.4

PM Range: 2.3 - 11.9

 

MY RESULTS: 6.5 ug/dL

Ashtons manual:

 

Many factors affect the immune system. One of these is stress, with increased output of the stress hormone, cortisol, which inhibits immune responses. Another factor is depression, also related to stress and associated with increased cortisol secretion. Increased cortisol levels can reduce resistance to infection and also cause flare-ups of incipient infection. Benzodiazepine withdrawal can clearly be stressful but, strangely, in patients that I have tested, blood cortisol concentrations have been low.

 

I have been diagnosed with mastocytosis caused by withdrawal.

That and the severe muscle contracture has caused severe degeneration through my spine that I didn’t have last year. My skull has collapsed on to my neck, I have Craniocervical Instability. It is pressing on my brainstem. My jaw is ducked because of it.The twisting  and dystonia has caused scar tissue to build up around my surgery site which has caused my spinal cord to tether.

 

I need to have fusion surgery through my whole neck and my skull fixed to it with rods and my spinal cord untethered. They don’t do this on the uk. I need to raise £200k to go to Spain for surgery to literally save my life. To stop me being internally decapitated.

 

I can!t have surgery because no drugs work properly bow.

 

So Translator, as I have told you before quoting Ashton and telling me this is WD is insulting.

 

You are not supposed to respond to my posts.

 

 

Ajusta. Had I written your name, or mentioned you? NO. Just Ashtons manual. Everything is not about you, I discussed with others.

 

"Telling me this is WD is ******* insulting." I have no clue what you are talking about. Please, calm down!

 

Am I told to avoid you? No, it’s the opposite, and we have discussed that before. You had written in my blog. Don't you remember the message from a moderator? You called me a bitch. Thanks, and enough about that. 

 

 

 

Edit: Profanity Removed:

 

You were told not to respond to my posts.

I think what is important here is to understand that some patients are left in terrible situations after coming off the drugs.  Whether there are other health related issues or not, staying on the drugs might have been the better option in certain cases.  For those who cannot recover, compassion is paramount, because the despair felt when there is no hope is really quite unbearable.  The focus should be on the unbearable situation of the opening poster and nothing else.  I doubt many of us here would have strength to cope in the same situation, because it is an extreme situation.

 

YES.

 

I do not understand why arguments take place. When someone tells me that he or she is suffering non stop I know it is not helpful to respond with a statement about what I think his or her agony is. In fact, this will only make the agony worse. The first emotion which leads to a real understanding and to solutions is: Try to put yourself into the position of the other person and believe that what she or he is telling is the truth. The truth in his or her world of agony. It is as simple as that. First step listen, next step try to feel what the other one feels, then try to understand the setting in which the person is living in. In the end it is clear that with our personal setting, in life, and our mind set can never be the frame for another person.

I have survived a severe trauma and PTSD and had to learn that people told me my agony would come from this or that, cause they were convinced they knew what I had to do and each time this happened, I was re traumatized in these years. I learned a lot about what it takes for another person to just stand by my side, looking at my agony, believing my personal truth and not running away, not arguing with me about what I should do - just BE with me. It takes a lot, because it is simply sharing suffering and this means pain for the other one, staying with a person in agony.

 

And I learned that the best thing someone could do to help me, was to be there and to encourage me to find my personal way to cope. Like "I get it, it is not fair, its unbelievable - and I will not leave. I will be at your side until you have found a way to cope - and you are wonderful no matter how big your pain is".

 

I would love this kind of handling pain and agony here on the board. We are in a virtual community, no one can come around and bring cookies or hug someone, which makes it more complicated. Instead of fighting about words and labels it is more wise to accept that there is pain we cannot ease - but we can be here and not go away. Thats a lot.