More doom and gloom on YouTube videos done by doctors and benzo coaches. Or just my interpretation????

[[La...]]

The one I was referring to in my earlier post is the shorter one -- maybe about a minute long -- and it was on YouTube last week (I believe) in a section called "Shorts". In my opinion, it was rather inappropriate to say something as heavy as that in a "short" video. It's not a bite-sized topic, and I don't think it should be addressed as such.

[[Ga...]]

Agreed….sure upset my apple cart!!!

[[re...]]

This is the Short video that several of us have mentioned. Listen to what he says:

Quote

"Can benzodiazepine withdrawal be permanent? The answer is YES. For some people they develop something called protracted benzodiazepine withdrawal, and this was recently added to the FDA labels a few years ago. For these people, it's not so much of a withdrawal problem. It's essentially brain damage. When they come off the medication, they develop all of these neurological symptoms, and even when they start the drug again, it doesn't go away. Sometimes this takes years to fully recover. But in general most people recover. "

Please notice that the doctor here conflates protracted withdrawal with permanent withdrawal. But they are not the same thing. And even if you choose to call it brain damage, brain damage can heal. It's not necessarily permanent.

Bottom line: there's really nothing new in this video, and certainly no evidence that anyone develops anything that could be called "permanent benzodiazepine withdrawal."

Edited September 18, 2023 by [re...]

[[re...]]

I've yet to see any evidence that any benzodiazepine withdrawal is permanent. Protracted? Certainly. My own recovery has been protracted. But permanent? No.

Edited September 18, 2023 by [re...]

[[La...]]

Thanks for posting that, redevan.

[[Ga...]]

Yes, thank you Redevan, I agree!   

[[Ki...]]

Yes Redevan Thanks for that post and I agree also. 

Can take ages/years but healing is happening albiet slower than we would like 

and we stress ourselves over maybe permanent

and that halts things somewhat and draws things out even more I have found.

Sometimes the symptoms we have after long term withdrawal, are often symptoms

that we were given the benzos for and  were camoflagued with the benzos

and never really fixed so flare again and we need to treat two things now,

which leads us down the rabbit hole of permanent damage Sadly

Edited September 19, 2023 by [Ki...]

[[Be...]]

This is interesting.  I think this doc knows what he's talking about.  I don't like to "bury my head in the sand."  I know mine is permanent.  There are a lot of studies about how there is an association between benzos and dementia.  I've been diagnosed with Memory Impairment and Amnesia and never had a problem with my cognitive functioning until I got off the benzo's.  I can't even work anymore and am on permanent disability from them. 

Edited September 19, 2023 by [Be...]

[[Em...]]

Hey gardenguru, I remember you from years ago.  
 

This is such an interesting and emotive topic. I know exactly what you mean. It seems like when you first enter this journey you cling onto these beliefs (possibly from reading things like the Ashton manual etc) that once off the drugs, the symptoms will dissipate within 6-18 months. And for many, they do. But as you start to go through this process for many years, like a lot of us do, you start to wonder how long can this actually go on for some of us? Those that seem to have so much more than just standard withdrawal that seems to improve over time with lots of windows and waves. There seems to be a category of people who go through so much more than that. They don’t have anything that resembles a window. Their symptoms are chronic and long lasting. They aren’t just in “withdrawal” because when they try to reinstate the drug to make the symptoms go away, they have serious adverse reactions and it makes the symptoms worse. They become hypersensitive to all medications, supplements, chemicals, even foods. This is nervous system damage. You then start to wonder… can it be permanent? When they say  “most people fully heal”, what does that mean? You start to analyse everything everyone is saying and read into it. I used to drive myself completely crazy analysing all of this so I do understand. 
 

My honest feelings on it are mixed. I think (and really hope) people do recover from the damage these drugs cause in time but for some people it can be an excruciatingly slow process. And one that often feels like it’s getting worse before it gets better. The body does always want to heal, no matter what we throw at it. I believe the people who have witnessed this process for many years over and over. It’s really hard to cultivate hope and belief when in the midst of it yourself. The suffering is so extreme and feels so deep rooted that it would be very difficult to have a robust and strong sense that you were going to be ok in the middle of the torture. Some of these videos like the one discussed in this thread, can be quite scary in the throes of it all. It creates panic and despair. 
 

How did you find the mould problem in your house? I used to be of the opinion that mould can’t cause all these problems (and I still don’t because I have symptoms that are definitely only from psych med damage alone) but now i think mould can truly be quite an issue for some people. Especially those of us who are compromised from the nervous system damage and multi system effects. I live in a house that has some black mould downstairs. And also some mild outbreaks of it upstairs in moisture creating rooms such as bathrooms. However that has been fixed by having good ventilation and air flow daily. The main issue in this house is downstairs - I think it may be rising damp. In which case, we would possibly need major works done. I am still too sick to physically do much at all so we have decided to move house to somewhere much newer without a damp problem. We are currently in the process of clearing the house out, getting rid of a lot of stuff, selling some furniture and other items and not sure what we will do with the rest as it may need to be cleaned or remediated. I’m not sure. It’s all a bit overwhelming when you’re so incredibly sick from benzos. I don’t know how anyone would do this alone. But I feel mould could be contributing towards my ill health as I have, like you, experienced an extremely severe and protracted in duration, reaction to these neurotoxins. In no way do I feel the mould caused all of my current problems, I just feel it may be contributing as it’s always a good idea to live in a healthy environment. The benzos are what started this complete and utter devastation for me. But I’ll be interested to hear how you get on with the remediation as I imagine this will involve quite a lot of work on your part and theirs. Let’s hope it helps our chronic symptoms to tackle the beast (mould)! 

Edited September 19, 2023 by [Em...]

[Guest [...]]

19 hours ago, [[B...] said:

This is interesting.  I think this doc knows what he's talking about.  I don't like to "bury my head in the sand."  I know mine is permanent.  There are a lot of studies about how there is an association between benzos and dementia.  I've been diagnosed with Memory Impairment and Amnesia and never had a problem with my cognitive functioning until I got off the benzo's.  I can't even work anymore and am on permanent disability from them. 

How do you know it’s permanent, @[Be...] ??

[[Ga...]]

Hi Becks, has anyone else in your family ever been diagnosed with dementia?

[[...]]

On 19/09/2023 at 09:41, [[E...] said:

Hey gardenguru, I remember you from years ago.  
 

This is such an interesting and emotive topic. I know exactly what you mean. It seems like when you first enter this journey you cling onto these beliefs (possibly from reading things like the Ashton manual etc) that once off the drugs, the symptoms will dissipate within 6-18 months. And for many, they do. But as you start to go through this process for many years, like a lot of us do, you start to wonder how long can this actually go on for some of us? Those that seem to have so much more than just standard withdrawal that seems to improve over time with lots of windows and waves. There seems to be a category of people who go through so much more than that. They don’t have anything that resembles a window. Their symptoms are chronic and long lasting. They aren’t just in “withdrawal” because when they try to reinstate the drug to make the symptoms go away, they have serious adverse reactions and it makes the symptoms worse. They become hypersensitive to all medications, supplements, chemicals, even foods. This is nervous system damage. You then start to wonder… can it be permanent? When they say  “most people fully heal”, what does that mean? You start to analyse everything everyone is saying and read into it. I used to drive myself completely crazy analysing all of this so I do understand. 
 

My honest feelings on it are mixed. I think (and really hope) people do recover from the damage these drugs cause in time but for some people it can be an excruciatingly slow process. And one that often feels like it’s getting worse before it gets better. The body does always want to heal, no matter what we throw at it. I believe the people who have witnessed this process for many years over and over. It’s really hard to cultivate hope and belief when in the midst of it yourself. The suffering is so extreme and feels so deep rooted that it would be very difficult to have a robust and strong sense that you were going to be ok in the middle of the torture. Some of these videos like the one discussed in this thread, can be quite scary in the throes of it all. It creates panic and despair. 
 

How did you find the mould problem in your house? I used to be of the opinion that mould can’t cause all these problems (and I still don’t because I have symptoms that are definitely only from psych med damage alone) but now i think mould can truly be quite an issue for some people. Especially those of us who are compromised from the nervous system damage and multi system effects. I live in a house that has some black mould downstairs. And also some mild outbreaks of it upstairs in moisture creating rooms such as bathrooms. However that has been fixed by having good ventilation and air flow daily. The main issue in this house is downstairs - I think it may be rising damp. In which case, we would possibly need major works done. I am still too sick to physically do much at all so we have decided to move house to somewhere much newer without a damp problem. We are currently in the process of clearing the house out, getting rid of a lot of stuff, selling some furniture and other items and not sure what we will do with the rest as it may need to be cleaned or remediated. I’m not sure. It’s all a bit overwhelming when you’re so incredibly sick from benzos. I don’t know how anyone would do this alone. But I feel mould could be contributing towards my ill health as I have, like you, experienced an extremely severe and protracted in duration, reaction to these neurotoxins. In no way do I feel the mould caused all of my current problems, I just feel it may be contributing as it’s always a good idea to live in a healthy environment. The benzos are what started this complete and utter devastation for me. But I’ll be interested to hear how you get on with the remediation as I imagine this will involve quite a lot of work on your part and theirs. Let’s hope it helps our chronic symptoms to tackle the beast (mould)! 

I agree with your first 2 papargraphs, I haven’t had anything that even resembles a window. Acute was so brutal for me and I had pacing akathisia for 14 months. I also tried a reinstatement and it made everything worse. Supplements and vitamins throw me into a tailspin. I am now just a little over 21 months off and while I am doing better than I was I am nowhere near recovered. I am hopeful that I will continue to get better but like Becksblue said, I also have to be realistic. Since I still have insomnia it is probably safe to say that sleep will not be coming back anytime soon. Since I still have jerks and twitches it is probably realistic to say that they are going to be around for a while. I understand that at this point I am no longer dealing with any kind of withdrawal, I am dealing with brain and cns damage probably caused because I was made to get off it cold turkey. I only took it for 2 months but that drug got its hooks in me really good. I think it’s f I had been allowed to do a taper I would probably be in a better place right now. I am hopeful that I will continue to heal but I also understand that I will probably never be as resilient as I was before this fiasco.

[[re...]]

@[...] At this point you're no longer dealing with withdrawal. You're dealing with recovery from the changes - or the damage, if you want to call it that - caused by the benzos. Recovery takes longer for some people than for others. It may be protracted. My recovery was protracted. It took several years. It is not realistic to think that you are permanently damaged if you can't prove it. In fact, it's self-defeating. The only reason I can think that anyone would want to insist the damage is permanent is if they're suing the doctor or drug company for damages, or maybe if they're trying to qualify for Social Security permanent disability payments. Otherwise, I don't see the point. Your damage may be permanent, or you may slowly recover from it. Since you can't know for sure which of these is true, you might as well believe the one you prefer.

[[...]]

@[re...] thanks for the positive talk. It is definitely needed some times. I always appreciate the fact that people that have healed, like yourself, come back to help those of us still in it. I honestly hope this does not last much longer. I just now if this goes on for years I will probably be traumatized for rest of my life.

[[re...]]

@[...] - As I said, my recovery was protracted. It took several years, which is a lot longer than most. Here's how I got through it:

Every morning when I got up, feeling horrible, I told myself "I'm a little better today then I was yesterday, and I'll be a little better tomorrow than I am today." I told myself that because I knew it was true, even if I couldn't necessarily feel the improvement every day. I'd think back to how I felt a month before, or a year before, and I could see I was a lot better than I was then. So I knew I had to be healing gradually, a little every day, and I had to keep reminding myself. It was important that I not forget what I knew to be a fact. That enabled me to hang on through the waves and rough patches. I knew I was healing, even though it was up and down.

The other thing I did was that I kept busy. I hung on to my job, even though there were many days when I didn't feel like going in, because the fact was that I felt better at work than at home. So I worked as much as I could, put in lots of overtime, and ended up making lots of money. I even got promoted during that time. I felt a whole lot better with an income than I knew I'd feel without one. It's amazing how much a paycheck can help one sleep at night.

So those were the two tactics that got me through - that plus the occasional cup of hot chocolate when I'd get the crazy blues. Hang in there, xray.

[[mi...]]

On 14/09/2023 at 14:33, [[G...] said:

I follow some of the doctors, psychiatrists, and benzo coaches on YouTube, and it seems that lately they mention longer and longer recovery times, and even speak to permanent brain damage.  This, of course, unnerves me as I am in my 42nd month post Valium taper, and, therefore, am more sensitive to these statements and projections than I would have been at 18 months.

Josef Witt-Doerring recently discussed permanent brain damage on two different videos, in one he says benzos can cause permanent brain damage and on the other he says there can be permanent brain damage, but most people recover in months to years.  And, I have noticed more and more benzo coaches discussing setbacks which can occur many years out for no apparent reason, or may be tied to stress, antibiotics, alcohol, or diet.   In my second year I was probably more positive about my full recovery, and was not worrying as much about setbacks and a permanent brain injury, and it never entered my mind that I would still be here on benzo buddies at 42 months!!!!

Maybe I am just being a bit paranoid and making more of this than I should, but it does appear that there are many new benzo coaches who are competing for clients, and wish to deliver the best news possible, yet have to admit that there are some bad outcomes out there in benzoland.

These are strictly my observations on a bad headache day!   My good news is that a substantial amount of mold has been found in my home’s attic and, thus, may be contributing to my sinus/head pain/jaw pain issues.  The company I have hired has a 4.8 rating out of 5, and treats both residential and commercial properties:  They have performed mold and mildew remediation in the Smithsonian, in assisted living homes, in hospitals, in private medical offices, and in residential properties on the market.  They only use EPA green products and their remedial treatment is multi-layered.   The owner of the company said he has seen mold contribute to all sorts of health issues, including headaches, sinus and throat issues, respiratory illnesses, and CNS issues.  If black mold is found it can cause even more severe and life threatening diseases.  My home does not have black mold, but does have two different mold varieties, one of which is known to cause excruciating headaches!

Ok, enough about me…..how is everyone else doing???

Hugs,

GG

 

Gardenguru, you read my mind. I've been thinking about posting about the same issue. We know the internet is full of information, good and bad but is becoming lately like television, full of commercials and mostly bad news. Most posting on you tube now with very few exceptions are looking to get money out of it.

Regarding benzos Dr Josep Witt-Doerring is the classic example. His videos are mostly full of horror stories now. I haven't seen any of his videos giving some kind of hope or positive outcome. I understand he can't give any advice online, but he could show stories of people that were able to overcome benzos like others do and there are many! I guess he can't because he doesn't have the experience or has been in the business long enough. Something that he is now good for are his fees. He charges shockingly excessive amount of money for treatments and consultation. It can be seen in his site.

On the other hand you have Dr's like Mark Horowitz or Jennifer leigh that give you at leasts some clues as of how to get out of this hell.

The bad part in all this is, I learned it after being some years in this battle, that there are not much we can do to fix it but just have a friendly and compassionate PD to get the pills from and wait for the ultimate healer: TIME

 

 

Edited September 20, 2023 by [mi...]

[[Be...]]

On 19/09/2023 at 19:15, [[G...] said:

Hi Becks, has anyone else in your family ever been diagnosed with dementia?

My uncle had early onset.  My dad had early onset.  He wasn't diagnosed with it, but I could tell.  He didn't speak much and then he started calling us kids by the wrong names  Obvious memory problems.  

[[Be...]]

On 19/09/2023 at 19:10, [[W...] said:

How do you know it’s permanent, @[Be...] ??

I've been suffering for about 12 years now and my cognition is getting worse.  How can it not be permanent if I'm getting worse and not better.  I had a seizure in 2012 from the benzo's and it damaged my brain and I've never been the same cognitively since. 

[Guest [...]]

I’m sorry you’ve been through such a terrible journey, @[Be...]

I’m not familiar with your history as you don’t have a medication/taper history. 

I’m am still hopeful you’ll eventually turn a corner, as I know there have been others on a similar timeline who have eventually recovered. 

Best wishes 

[[Be...]]

Thanks Winters Sun. 

[[Ti...]]

On 15/09/2023 at 03:00, [[l...] said:

I’ve been watching a drama called painkiller about oxycontine, think based on true events. Does make you realise you can’t always take it as gospel with what some experts come out with, quite frightening how doctors and pharma companies, pushed this drug. I’m over 4 years still not recovered, scares me to death I will never recover. Think you are better off not watching videos like that, no one really knows just guesswork on their part. Also if coaches and psychs are charging people for counselling may be in their interest to tell people they will take longer to recover. Also  other factors can be involved, mine is only partly the meds, large part is trying to deal with what my family did to me. Sure lot people who have setbacks in future is due to other things not just meds. So don’t despair.   Hope the mould sorts out your headaches.

Painkiller is not based on true events. It is a propaganda docudrama paid for by the addiction industry pushing a set narrative. Every series in the show mentions that it is not based on fact at the beginning of each show. Yes, some people got addicted to opioids. But for every one, there are 9 that didn’t. The chronic pain community is being forever harmed by this narrative and have been left completely by the wayside, many being ripped off of the only meds that allow them to function. Many suicides. Immense suffering. They are being treated like criminals for the crime of having chronic pain. 
 

Just because something is in a documentary format doesn’t make it real. Opioids are far safer than benzos and have a much needed benefit in medicine. Other documentaries that have been released are also pushing this War on Drugs narrative. There is a lot of money to be made through litigation and funding from Biden’s mental health initiatives. It’s a money grab with real human beings being harmed as collateral damage. 
 

If you really look, you’ll notice these films never address the original problem of chronic pain that warranted opioid use in the first place and hardly ever show the patients that only became dependent and not addicted. It’s a tragedy and downright evil what they are doing to people. 
 

[[Sc...]]

I'm 10 years off, and my symptom has got worse over the years. Sure these drugs cause permanent brain damage and i am talking neurological damage. It happens, depending on the dose and length of time exposed to the neurotoxins.

[[er...]]

On 15/09/2023 at 04:00, [[l...] said:

I’ve been watching a drama called painkiller about oxycontine, think based on true events. Does make you realise you can’t always take it as gospel with what some experts come out with, quite frightening how doctors and pharma companies, pushed this drug. I’m over 4 years still not recovered, scares me to death I will never recover. Think you are better off not watching videos like that, no one really knows just guesswork on their part. Also if coaches and psychs are charging people for counselling may be in their interest to tell people they will take longer to recover. Also  other factors can be involved, mine is only partly the meds, large part is trying to deal with what my family did to me. Sure lot people who have setbacks in future is due to other things not just meds. So don’t despair.   Hope the mould sorts out your headaches.

You say you haven't fully recovered but have you at least seen improvements? Is it easier now? Are you having longer windows?

[[Ka...]]

On 15/09/2023 at 08:41, [[G...] said:

Hello.  Yes, that was one of his short videos and seems to conflict with a longer video in which he says that the damage can be permanent, but that most everyone heals in months to years!  I guess we need to filter out those videos that are distressing and just follow our own personal healing trajectory.

I pray today is a good one as you continue healing!

Hugs,

GG

Hi Garden Guru!

Would you like to post any of the videos you mentioned that gave you concern? Also, how are you getting along since finding environmental toxin in your own home? How did you discover it? did you find it while cleaning etc? Im curious if you are feeling any differently since that remedy.

[[Ca...]]

 I think it depends on the extent of the damage.