Expecting Recovery (Healing)?

[[An...]]

Good study, valuable to prove benzo brain injury to the industry, yet it only went to 3.5 years.  Neuro studies often show brain / CNS injuries can take 3 to 5+ years to heal.  Also note that those studied benzo survivors were not prescribed neurological therapy (like physical therapy for the brain), which people with diagnosed brain / CNS injuries receive.  We would all feel better if benzo injury was medically acknowledged and treated - and we might heal better and faster.  I do 300-piece jigsaw puzzles three or more evenings a week.  Or play solitaire with cards (not on computer). 

 

My cognitive seemed to steadily worsen from about 14 months to 24 - 26 as the anxiety, which was making me hyper, decreased.  It was worrisome.  But now I have a breakthrough of more peace plus my cognitive is improving again.

 

We've learned healing from benzos is NOT linear.  And everyone is different.  Also there are underlying conditions doctors miss (hormonal, autoimmune, bluelight from screens, etc) that can have an effect - particularly insurance doctors who spend ten mins with you (pay extra for a concierge dr if you can).  Is there 100% healing?  Who knows.  But month by month  many report noticeable increase in functioning  / healing.  I feel better all the time - and for sure better than when on the benzo.  Is it 100% healed?  Nope.  Is it linear?  No.  Is it slow?  Yes.  Slow as tar.

 

Hang in there dear fellow sufferers.  xoxo 

 

[[La...]]

Here's a key line from the findings:

 

It is important to note that of those studies that included data that allowed for the calculation of effect sizes to determine the cognitive functions of benzodiazepine users at follow-up after withdrawal (Gorenstein et al., 1995;Tata et al., 1994), the maximum period between cessation and the collection of data at follow up was 10 months. These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning (Barker et al., 2004b).

 

Only 10 months. As we all know around here, it can take longer than 10 months to see improvements, so that's a significant limitation in terms of what this study means. There are other limitations to the study, so please read the "Discussion" section for more info.

[[La...]]

By the way, I didn't see the "3.5 years" reference in the study. If anyone finds it, please point it out. For now, it appears that 10 months is the maximum follow-up period.

[Guest [Sk...]]

 

By the way, I didn't see the "3.5 years" reference in the study. If anyone finds it, please point it out.

 

For now, it appears that 10 months is the maximum follow-up period.

 

:thumbsup:

[[...]]

I don’t see the point in posting a study like this one, in a group in which there are hundreds of terrified people coming here for hope. Now, I’m further along in the game at 16m and know many people who have healed, so it doesn’t effect me so much.

 

However, I promise you, that if I came across this post in the first few months off, it would have had a very serious effect on me that would have haunted me for months.

 

I think this is extremely irresponsible. 

 

[[La...]]

We're posting information for people who want to learn about it. Many of us ARE interested in what's being studied and written about this topic.

 

Anyway, please note the limitations in the study, including the fact that no one appears to be followed beyond 10 months post-cessation. For those of us who took the meds for numerous years, a 10-month follow-up period doesn't acknowledge the fact that some people take longer than that to heal.

 

 

[[li...]]

Good that this has been posted.

 

It surely doesn't make me happy. I know clonazepam has strong effects on acetylcholine, and I have been tortured with antimuscarinic drugs. I'd be in for a treat ...

[[Fi...]]

T1D, the point is that factual data is paramount for rational decision making as opposed to follow the leader type of behavior which perpetuates confirmation bias based upon anonymous anecdotal accounts which use phrases "heal with time". Lapis, I believe the 3.5 years is discussed in a couple of places in the study expressed as 42 months.

[[Fl...]]

I don’t see the point in posting a study like this one, in a group in which there are hundreds of terrified people coming here for hope. Now, I’m further along in the game at 16m and know many people who have healed, so it doesn’t effect me so much.

 

However, I promise you, that if I came across this post in the first few months off, it would have had a very serious effect on me that would have haunted me for months.

 

I think this is extremely irresponsible.

 

Are you suggesting that negative information about benzos be completely censored? If not, who gets to decide what gets shared and what doesn't?

[[La...]]

Thanks, Fi. I see that reference. It creates confusion, though, to have the 10-month reference. The tables don't really clarify the details, and I think one would have to look at the individual studies to confirm. This is a meta-analysis of a number of studies.

 

One of the tables (#3) looks at mean amounts people took, and it's all over the map. Some are quite high, while others are more moderate. Except for one case, they were higher than what I took. Interesting  to consider.

[[La...]]

If they actually followed people to the 3.5 year mark (which is hard to determine from the paper), then there might be other confounding factors involved between time of cessation and follow-up. Again, one would have to look closely at the studies to see how they were conducted in order to determine what is actually being said here.

[[...]]

I don’t see the point in posting a study like this one, in a group in which there are hundreds of terrified people coming here for hope. Now, I’m further along in the game at 16m and know many people who have healed, so it doesn’t effect me so much.

 

However, I promise you, that if I came across this post in the first few months off, it would have had a very serious effect on me that would have haunted me for months.

 

I think this is extremely irresponsible.

 

Are you suggesting that negative information about benzos be completely censored? If not, who gets to decide what gets shared and what doesn't?

 

I’m not sure who, but If it was I who where appointmented “censorer”, I wouldn’t have let this be posted.

What benefit does posting something like this study have in this specific community? 95% members/non members who lurk are extremely scared and vulnerable.

 

Answer this, if you where early in WD, what would you think if you came across this post?

[[...]]

T1D, the point is that factual data is paramount for rational decision making as opposed to follow the leader type of behavior which perpetuates confirmation bias based upon anonymous anecdotal accounts which use phrases "heal with time". Lapis, I believe the 3.5 years is discussed in a couple of places in the study expressed as 42 months.

 

Data can be construed to say whatever you want it to say. I’ll take the written and recorded accounts of the THOUSANDS of people who’ve healed over a “study” all day.

 

Tell me this. What purpose does this post serve?

 

Because whatever purpose it does serve better be grand enough in order to allow you to overlook the amount of fear and anxiety it certainly caused the many vulnerable people who, at the very minimum  lost sleep from it.

[[Fi...]]

The subject of this post is not anymore shocking than 95% of the personal story posts here. This post is science, the studies were performed by researchers and are referenced by practitioners & patients. Benzodiazepines are not a fiction and the lives that they affect are realities. This is not the dark ages with inquisitors, this is the 21st century, the so called age of reason. One cannot wish realities away, one must accept them & and live accordingly. Is it wrong to share scientifically determined truths?

[[Rx...]]

Negative information is a reality for some.  I've been so hurt in my withdrawal by being made to feel my horror needed to be swept under the rug.  I'm feeling better now, but it's extremely hurtful.  Seizures, death, etc. can be listed as side effects of drugs, should that be hidden too so as not to terrify?

 

 

[[Fl...]]

I’m not sure who, but If it was I who where appointmented “censorer”, I wouldn’t have let this be posted.

 

Even if that means that someone else was harmed because they were denied this information?

 

It isn't just people who are recently off the drugs in a vulnerable state who are reading these boards. For every one person who posts on a message board there is something like 100 others who are reading the posts without joining. What if this article could have prevented a dozen people from ever taking these drugs? Or what if this article helped someone understand what they are going through and prevented them from reinstating? Hiding information is not the answer.

 

What benefit does posting something like this study have in this specific community? 95% members/non members who lurk are extremely scared and vulnerable.

 

Scared and vulnerable people deserve to know the truth as well.

 

Answer this, if you where early in WD, what would you think if you came across this post?

 

How do you think it makes me feel being close to 8 years off and still suffering from significant cognitive issues? It isn't pleasant to think about but I am an adult and I need to know everything about these drugs so I can make informed decisions about how to live my life.

 

Truth be told early on I wasn't focused on the long term, I was concentrating on getting myself through each day. Things like this didn't mean much to me.

[[La...]]

Knowledge is power, in that having information about a particular subject allows a person to make better decisions for him- or herself. This section is called "Benzos in the News", and that's exactly what this article is. Those of us who are interested in reading the facts and discussing them -- as we have been doing in this thread -- appreciate the opportunity to do so.

 

If you take time to read the actual studies, then you can learn something from them. I've now posted the study that has been referenced in the article, so you can read for yourself what it actually says. You'll note that benzodiazepines have been associated with cognitive problems for years, and that information is in ALL of the medical literature. What the study re-confirms is that they are NOT meant for long-term use. It also refers to the individual, genetic aspect of medication metabolism. It is NOT saying that every single person who has taken a benzo will have these issues for an extended period of time. There are just too many individual variables to make sweeping statements like that.

 

[[La...]]

One other thing: This study was posted back in December 2017 by another BB (see the link in one of my previous posts). This MADinAmerica article is new, but the information it's quoting is not.

 

By the way, having more research on this topic validates what people are going through. That's a GOOD thing! We've all been hoping for MORE research, not less.

[[...]]

Negative information is a reality for some.  I've been so hurt in my withdrawal by being made to feel my horror needed to be swept under the rug.  I'm feeling better now, but it's extremely hurtful.  Seizures, death, etc. can be listed as side effects of drugs, should that be hidden too so as not to terrify?

 

Having a fairly healthy debate about THIS post - on THIS board - is fine. But please don’t go searching my posts and trying to pick a fight with me on posts I’ve made over a months ago.

[[bl...]]

Thank you for the study. I do a lot of research on my own and missed this. The more I know the better equipped I feel to tackle my symptoms “head on” :thumbsup:EVERYThing I’ve researched and others have researched has helped me take whatever control I can towards my own health and healing. Hopefully research will continue. As someone already stated, knowledge IS power for me.

[[Co...]]

My thoughts (based on the MadinAmerica article only - I haven't read the study):

 

- these studies are a good thing, because doctors need to understand how badly these "medications" have harmed us.  As the author of the MadinAmerica article states, "In order for patients to provide truly informed consent, prescribers must educate their patients about the adverse effects of long-term benzodiazepine use, including cognitive impairment." None of us would likely be here if our doctors told us we'd experience cognitive impairment, whether short-term or permanent.

 

- Of course there is still cognitive impairment at six months off.  In terms of our complete healing, even 3.5  years is still not "permanent."  I think it's important not to confuse the limits of the study with eternity.  "Permanent" and "never" are not scientific concepts.  If patients recovering from benzodiazepine damage undergo cognitive testing at 3.5 years off, I would absolutely expect that there would be a different between that group and a control group with no benzo history.  That doesn't mean they're permanently impaired, or even noticeably impaired.  If that same group is tested at 5, 7, or 10 years (which this study hasn't done), then I would expect continued improvement. 

 

I'm no rocket scientist and have no medical background, so perhaps I'm over-simplifying things, but it just seems to be common sense to me, given the fact that we were poisoning ourselves with these drugs for years, that it's just going to take a long, dadgum time to heal.  If I'm not back to my old self at 3.5 years, then so be it.  I have every expectation that I'm going to regain most if not all of my cognitive function, even if it takes years. 

 

I know I am much, much better now in month 21 than I was in month 6.  I expect I'll be better still at year 2, and 3, and 5, and 7.  I have complete faith in our bodies' ability to heal, and in the miracles of neuroplasticity and neurogenesis.  We would have been screwed if we stayed on these drugs - the cognitive impairment was unavoidable for us from the moment our doctors decided to prescribe them for us without warning us of the risks. 

 

We can't measure "100% healing" any more than we can declare "permanent damage."  But I absolutely believe that we can recover our cognitive function, given enough time. 

[[La...]]

And I really appreciate the opportunity to discuss these studies with other BBs. We can share information, clarify points and improve our understanding of benzodiazepine withdrawal.

 

On a number of occasions, I have printed out documents that have been posted in this section or forwarded them to others, including family, friends and medical professionals. It has been extremely helpful. It has added legitimacy and validation to my experience.

[[Rx...]]

Negative information is a reality for some.  I've been so hurt in my withdrawal by being made to feel my horror needed to be swept under the rug.  I'm feeling better now, but it's extremely hurtful.  Seizures, death, etc. can be listed as side effects of drugs, should that be hidden too so as not to terrify?

 

Having a fairly healthy debate about THIS post - on THIS board - is fine. But please don’t go searching my posts and trying to pick a fight with me on posts I’ve made over a months ago.

 

From the 4 years off protracted withdrawal never healed thread whereas a poster was asking how to join the protracted section:

 

Sorry you're still in this shit but message the admin rather than posting here.  WTF

 

?  Was WTF necessary?

 

 

[[Rx...]]

The link to thread I mentioned below:  http://www.benzobuddies.org/forum/index.php?topic=207205.msg2679561#msg2679561

 

Btw, I have permanent (per an ENT specialist) minor hearing loss and tinnitus due to benzodiazepines in spite of my other huge list of symptoms having gone away.  Better, but no complete success. 

 

Negative information is a reality for some.  I've been so hurt in my withdrawal by being made to feel my horror needed to be swept under the rug.  I'm feeling better now, but it's extremely hurtful.  Seizures, death, etc. can be listed as side effects of drugs, should that be hidden too so as not to terrify?

 

Having a fairly healthy debate about THIS post - on THIS board - is fine. But please don’t go searching my posts and trying to pick a fight with me on posts I’ve made over a months ago.

 

From the 4 years off protracted withdrawal never healed thread whereas a poster was asking how to join the protracted section:

 

Sorry you're still in this shit but message the admin rather than posting here.  WTF

 

?  Was WTF necessary?

[[Rx...]]

P.S.  I addressed one post (not posts plural).

 

The link to thread I mentioned below:  http://www.benzobuddies.org/forum/index.php?topic=207205.msg2679561#msg2679561

 

Btw, I have permanent (per an ENT specialist) minor hearing loss and tinnitus due to benzodiazepines in spite of my other huge list of symptoms having gone away.  Better, but no complete success. 

 

Negative information is a reality for some.  I've been so hurt in my withdrawal by being made to feel my horror needed to be swept under the rug.  I'm feeling better now, but it's extremely hurtful.  Seizures, death, etc. can be listed as side effects of drugs, should that be hidden too so as not to terrify?

 

Having a fairly healthy debate about THIS post - on THIS board - is fine. But please don’t go searching my posts and trying to pick a fight with me on posts I’ve made over a months ago.

 

From the 4 years off protracted withdrawal never healed thread whereas a poster was asking how to join the protracted section:

 

Sorry you're still in this shit but message the admin rather than posting here.  WTF

 

?  Was WTF necessary?