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Disturbing mat'l on internet - not on this site- but just causes doubts about BB


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Hi to all - I wasn't sure where to post this and didn't want to alarm anyone else on BB so I thought I would write to the Mod. Team and hopefully you can help put my fears and doubts to rest.  I am not even sure if you will be accepting of this but thought I would try.......if this is inappropriate I apologize .....but last night I was on the internet trying to find what kinds of foods might help with w/d sx.  I found a site

called www.anxietyinsights.info/ - there was an abstract on there entitled Gabapentin May Alleviate Benzo withdrawal symptoms.  There was a

discussion further down on the site.  Apparently the author (I assume he was the author) was touting the fact that Benzos do NOT cause w/d

at all.  He said that many many people with epilepsy were taken off benzos and put on anti-convulsants with nary a sign of w/d.  He said

there's no mechanism in your brain that would account for it, other than BELIEF.  He says if you tell someone that they will suffer horrible w/d sx, they will and they will also suffer a return to the pre-existing anxiety state if they had one.  He said Epilepsy patients are on much higher

doses of benzos than anxiety patients.  He also goes after Dr. Ashton and asking why she never mentions treating epilepsy patients.  He says there is no evidence that taking Benzos causes any kind of damage to the brain that needs repairing.  He says that most of the symptoms that

people get when going off Benzos are classic anxiety symptoms.  He says the brain is well-versed in handling benzos because they are in all the food that we eat and our brain has been handling them since our first brain cell was formed.  He says that a full-blown anxiety disorder could be a result from going off a benzo cold-turkey or that the anxiety is the original reason for going on the benzo to begin with.

    The Anxiety Insight site also states that benzos are found in the nervous system of all living things that have one (a nervous system) and that most living things will die without the regular amounts of benzos obtained from food and even if the HALF-LIFE is 100 times the known rate,

it still wouldn't account for protracted w/d sx for years after people stop taking them.

    He says the Benzo Support sites are practicing quackery run by a bunch of anti-benzo zealots and it just serves to keep people from getting help for their real original problem. 

      This is very upsetting and has caused me now to doubt whether I am doing the right thing.....I keep thinkign of the last doctor I saw who

said "No one should have to be like you are right now."  (I was shaking and crying).  He said, "go home and take the K in the evening and also

take it in the morning to help you.  It is a good drug - the best for anxiety...."  He also told me to take Remeron and to up my dose of Prozac.

You can see why this is so confusing for those of us who are trying to get back to normal.

        I hope you are not offended by this, but I thought you should know that these kinds of things are being said - you probably do know that,

but I didn't.  And it came as quite a shock to me.  Thanks for listening and again, if this was inappropriate to bother you all with, I apologize.

Hoping2BFree

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Hi Hope, there are many doctors out there and so called experts who do not acknowledge withdrawal symptoms from benzos. This is not uncommon. And yes there is information on the internet that some have written that concludes the same things. Unfortunately as many of us have found out, benzo withdrawal symptoms are real for many people. They are not a result of anxiety. Many in the medical community just do not have knowledge or understanding about benzos unfortunately. Do not let them bother you, it is best to just ignore them so you do not get upset. We know the reality of the situation and those who have never experienced benzo w/d just do not understand it.
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Thank you for your reply Can'tWait - but I just can't see how if this information is public knowledge, why doctors wouldn't know about it.  It confounds me.  What is there to gain for them to NOT know this information.  And why, when you tell them, they look at you as if you have two heads.  I saw a retired neurologist two weeks ago for acupuncture - he only does that now and I told him I was in withdrawal from Klonopin and

he said "oh yes, he knew about benzos and that they are very hard to get off of."  But he didn't want to supervise my taper and he told me to go to someone else which I did....the doc who told me to increase my K.  So I am not going back to him.  But I just can't understand, if this happens to people, that doctors don't or won't know about it.  Are people who have w/d sx in the minority?  Can most people just go off these drugs?  Are the people who are so sensitive to them, do they already have an anxiety issue?  I just can't get it straight in my mind, which is not ususual because my mind is so screwed up................thanks again for your response.  I will not read these things anymore - but sometimes you are into reading them before you know what you are reading - but just not reading them doesn't really solve this issue for me.  Thanks for listening.....Hoping2Bfree

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Hi Hoping2befree,

 

It's perfectly fine to have this discussion out on the open forum, you'll find many of them there already.  In fact, we have a section called Chewing the Fat which would be a perfect place to get input from others about this.  It's often better to bring these topics to light rather than hide them for fear they'll scare someone.  Because information is so easily obtained, we find that exposing them here and allowing everyone to comment helps dispel the fear and ignorance we encounter from some sources on the internet.

 

Pam

 

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Yes, please do - I just didn't want to do it, because, as I said, I don't want to make anybody's fear worse, like reading that material did for me.

Thank you!

Hoping

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What is there to gain for them to NOT know this information. 

 

But I just can't understand, if this happens to people, that doctors don't or won't know about it.  Are people who have w/d sx in the minority?  Can most people just go off these drugs?

 

 

I would imagine that the majority of people who are on them are on them for life.  Just like cigarettes.

 

Whether the doctors know and fake ignorance or just don't know the result is the same, a legion of chemically addicted zombie with impaired cognitive function paying money every month.  What better customers could the health care cash cow ask for.

 

 

I think people forget that the current world is focused solely on money.  It's the only important thing in our modern industrialized societies.  Life and happiness are worth far less than cold hard cash to faceless corporations.

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Hi James - thanks for your comments.  yes this whole thing has me so bummed out and confused.  I know you are right - that our culture is all about money, but there must be SOME doctors who really believe their hippocratic oath "...first do no harm..."  Our medical system has turned into such a busy, unfeeling, uncaring bureaucracy.....and perhaps, like you said, most people are on them for life.  I probably would have been

17 years is a long time and I had no ill effect that I knew of, but then I was put on Neurontin and the jig was up after that.  And then the doctors put me on an increased dose of K and tapered me off too fast (hardly call it tapering - was off in 18 days) and then the smaller dose didn't work anymore either.  So I could have been one of those zombies who was a lifelong taker of Klonopin - now I will be a lifelong Hater of Klonopin for the days and months (and I hope not years) that it has robbed from me.

      Thanks again james for your response - I appreciate hearing from you.

Hoping

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Hi James - thanks for your comments.  yes this whole thing has me so bummed out and confused.  I know you are right - that our culture is all about money, but there must be SOME doctors who really believe their hippocratic oath "...first do no harm..."   Our medical system has turned into such a busy, unfeeling, uncaring bureaucracy.....and perhaps, like you said, most people are on them for life.  I probably would have been

17 years is a long time and I had no ill effect that I knew of, but then I was put on Neurontin and the jig was up after that.  And then the doctors put me on an increased dose of K and tapered me off too fast (hardly call it tapering - was off in 18 days) and then the smaller dose didn't work anymore either.  So I could have been one of those zombies who was a lifelong taker of Klonopin - now I will be a lifelong Hater of Klonopin for the days and months (and I hope not years) that it has robbed from me.

      Thanks again james for your response - I appreciate hearing from you.

Hoping

 

Thanks H2BF

 

btw I think the Hippocratic oath has been replace with the "Hypocritic" oath.

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I'm not sure I understand why the misinformed words of some jack on a blog makes you doubt anything.  I can't even decide where to begin debunking this person, but here are a few points.

 

1) They are stuck on this thing about epileptics not having severe withdrawals.  Epilepsy requires medication for LIFE and if these people are taken off benzos, it is because they are put on something stronger like tegretol.  I can speak from experience and say when I was put on phenobarbital for withdrawal, it STOPPED the symptoms completely.  No doctor in their right mind would take someone with epilepsy off of benzos and not put them on something else to prevent seizure.

 

2) They keep harping on this ludicrous notion that there are benzodiazepines in our food.  This comes from some research years back that found "trace amounts" of "benzodiazepine like" substances in fruits and vegetables.  You can use mouthwash every day and absorb "trace amounts" of alcohol and not have any problems but if you start drinking a bottle of vodka every day, you'll be in the same boat as all of us suffering from the after effects of benzos.

 

3) They are in this camp that loves to spout off about "anxiety disorders."  I don't have any anxiety at all in my current state of post withdrawal - just twitching feet, ringing ears, vision problems, itching skin, etc.  Further, I wasn't prescribed these drugs for anxiety, but for mild insomnia which has now resolved completely.  So anxiety, and especially anxiety as a "root problem" simply does not explain the neurological symptoms I am dealing with.  I suspect there are many others out there in my situation.

 

One thing I will agree with them on is that anxiety does make withdrawal symptoms worse.  Certainly it is true that not all people (or even most) will have a terrible time getting off these meds and expecting things to be horrible is probably ill advised.

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Seriously, moderators are editing my posts?

 

Hi Ryan, I sent you a PM on this one, but since you called it out here I will respond here as well. The policy on here is no swear words so I went ahead and removed it out of your post. We all slip up and I understand the anger/frustration with benzos, but we have to enforce the rules to keep this a comfortable environment for everyone. Hope you are feeling okay today and have a nice day.

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I wasn't talking about that.  I wrote several more sentences that also disappeared when you edited the post.  I guess it was some sort of double edit issue.  As far as the swearing goes, I didn't mean to curse.  I didn't know that was considered a swear word.
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I wasn't talking about that.  I wrote several more sentences that also disappeared when you edited the post.   I guess it was some sort of double edit issue.  As far as the swearing goes, I didn't mean to curse.  I didn't know that was considered a swear word.

 

Hi Ryan, I only edited your post to remove the profanity, nothing else was changed on my end. It sounds like it was indeed a double edit issue. Can you modify your post to add the missing sentences back? If not, you can PM them to me and I can add them back, whatever is easiest for you.

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It's all good.

 

My other points were:

 

1) Dr. Ashton did not treat epileptics because she is not an MD.  As I stated earlier, epileptics do not "get off" medication, they cross over to progressively stronger medications under the care of medical doctors who specialize in this condition.  No doctor, including Ashton, would ever recommend that an epileptic stop taking benzodiazepines without getting on something more powerful. 

 

2) This website and this person seem to have a very strong opinion in the other direction - they are very pro-drug and they are promoting everything from AD's to benzos to neurontin.  You should trust a person like this as much as you would trust a herb salesman who tells you that your symptoms can be healed with Chinese berries.  There is no point in arguing with someone who has a vested interest in the position they are promoting and who makes their arguments without a shred of scientific evidence. 

 

3) I agree with them that, in some cases, people who have debilitating withdrawal symptoms after many years may indeed be dealing with some psychological/anxiety issues.  I have seen people on this board who are freaking out about being in a state of "acute withdrawal" after a year or two who then admit that their only symptoms are intrusive thoughts and anxiety about not getting better.  Perhaps some of these people are making themselves sick with anxiety or obsessive compulsive type issue and could greatly benefit from CBT or other therapy.  This does not make withdrawal symptoms any less real for the vast majority of patients.

 

4) There is another category of users who they do not mention - recreational drug addicts with no history of anxiety.  If you want to know how they experience withdrawal from benzos, go check out sites like bluelight.ru.  There are hundreds of discussions about drug withdrawal on there an the consensus seems to be that benzodiazepines are by far the worst and the longest. 

 

5) If this person is correct and all protracted withdrawal symptoms are psychosomatic, I wonder how they would explain the fact that the vast majority of us who are dealing with this syndrome see a gradual decrease in symptoms over time leading to a complete recovery, all without the aid of CBT or talk therapy.  If this was indeed an "anxiety disorder" like they and so many other yahoos claim, we would never heal until we re-programmed our minds in a therapeutic setting. 

 

Don't let this kind of stuff bother you.  You can't convince drugs pushers that they're wrong but don't for one second start believing that they're right.

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Hey Ryan - thanks for you input - you said it well, especially in the last few comments.  And I found it interesting what you said about the "recreational drug users" - who had no anxiety to begin with - but are having bad w/d's.  And I didn't know that Dr. Ashton was not an MD - that is interesting to me as well.  And I thought, like you said, that they wouldn't just take people with epilepsy off of a benzo and NOT put them on something else.  But I thought well, that is so obvious, that I must be missing something here.

      Once again, thanks.

Hoping

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ryan,

 

So this touches on Epilepsy, which I have..as you can see from my sig. line.. I'm on some high doses. I have Temporal Lobe Epilepsy along with a few other problems. I can tell you the points that you made are not true in many ways.

Number 1, Many Epileptic Patients are looking for better ways to control Seizures these days, such as the Ketogenic Diet.

Number 2, Doctor's DO NOT put patients on a higher dose of a Antiepileptic UNLESS they need more of the med until the seizures are controlled, Benzo-wise, Valium is used to treat Status Epilepticus, Klonopin..just convulsions from what I have been told on a Epileptic forum...many Epileptics' come off Benzos gradually such as we all do, I, myself ..well.. speak for myself, I have came across Epileptics tapering Benzos and they have all the SX's we all do, seizure threshold maybe weaker, but it can be done.

I went years without a AE and had no seizure's, it can be done without medicine in many cases..not particularly in children.

Touching on Epilepsy is a entire different story from Benzo withdrawal, in fact some of the Benzo w/d symptoms can mimic Epileptic Symptoms..such as Tremor, overdrive, stress, high anxiety, migraines and so on...LIGHT SENSITIVITY IS A BIG ONE!

As far as Neurontin, it is used to treat many problems, yes including Epilepsy and Bipolar, also Schizophrenia..

But note: Neurontin is not a miracle drug for Benzo w/d.

As I stated earlier, epileptics do not "get off" medication, they cross over to progressively stronger medications under the care of medical doctors who specialize in this condition

This kind of doctor would be a Neurologist or Epileptologist.. I've seen several and too many! Epileptic's can get off medications, it depends on the Epilepsy.. as you must know there are at least 150 types of seizures, depending.. on what type of seizure depends on the medicine.

Some don't even use medication.

95% of seizures are harmless, all they are is the brain resetting itself, setbacks, smells, sensory problems, partials, auras and even migraines can be a type of seizure.

About crossing over to a stronger medication, this is not correct either, I've had 400mg of Tegretol to work fine for Seizures compared to 7,000mg of Keppra..for example..did not work.

Best way I can explain it.

My sources:

4 Tonic Clonic seizures in a row @ age 12 was given Pheno to stop it.

Countless Absent Seizures throughout my life with Schizophrenia, yes I have Schizophrenia.

Schizophrenics can develop seizures, is no surprise.

Had 2 Partial Seizures.. so there you go. :)

 

Keryn.

 

 

 

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Thanks for the info, keryn.  my experience with this condition is limited to a couple of friends and an uncle with a very serious seizure disorder.  I am glad to hear that many can live without meds.  I do call into question the idea that epileptics do not suffer from withdrawal and it sounds like you agree.
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Thanks for the info, keryn.  my experience with this condition is limited to a couple of friends and an uncle with a very serious seizure disorder.   I am glad to hear that many can live without meds.  I do call into question the idea that epileptics do not suffer from withdrawal and it sounds like you agree.

 

ryan,

 

I'm afraid you're very very wrong, Epileptics do suffer from w/d, it's just that the symptoms mimic Epilepsy to a point..

I'm Epileptic and your analysis of "we" do not suffer w/d is very wrong.

I also visit an Epilepsy forum and there are many upon many who have came off Benzos, particularly Valium, Klonopin and Ativan.. they indeed DO SUFFER THE SAME W/D as others. I don't know where you get Epileptics don't suffer w/d, but you're misinformed. I'm not being critical, just correcting you, as an Epileptic. I have family who are Epileptic of course, also Schizophrenia runs in my family, w/d is w/d.. it don't care what disease you have or anything, it effects many of us the same.

 

Keryn.

 

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Thanks for the info, keryn.  my experience with this condition is limited to a couple of friends and an uncle with a very serious seizure disorder.   I am glad to hear that many can live without meds.  I do call into question the idea that epileptics do not suffer from withdrawal and it sounds like you agree.

 

ryan,

 

I'm afraid you're very very wrong, Epileptics do suffer from w/d, it's just that the symptoms mimic Epilepsy to a point..

I'm Epileptic and your analysis of "we" do not suffer w/d is very wrong.

I also visit an Epilepsy forum and there are many upon many who have came off Benzos, particularly Valium, Klonopin and Ativan.. they indeed DO SUFFER THE SAME W/D as others. I don't know where you get Epileptics don't suffer w/d, but you're misinformed. I'm not being critical, just correcting you, as an Epileptic. I have family who are Epileptic of course, also Schizophrenia runs in my family, w/d is w/d.. it don't care what disease you have or anything, it effects many of us the same.

 

Keryn.

 

 

Keryn,

 

I think you misunderstood me.  I absolutely believe epileptics suffer withdrawal just like everyone else.  I was questioning the position of the article author who stated that epileptics never experience withdrawal, whereas anxiety patients always do.  I think that's nonsense, so you and I are in total agreement. 

 

-Ryan

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Thanks for the info, keryn.  my experience with this condition is limited to a couple of friends and an uncle with a very serious seizure disorder.   I am glad to hear that many can live without meds.  I do call into question the idea that epileptics do not suffer from withdrawal and it sounds like you agree.

 

ryan,

 

I'm afraid you're very very wrong, Epileptics do suffer from w/d, it's just that the symptoms mimic Epilepsy to a point..

I'm Epileptic and your analysis of "we" do not suffer w/d is very wrong.

I also visit an Epilepsy forum and there are many upon many who have came off Benzos, particularly Valium, Klonopin and Ativan.. they indeed DO SUFFER THE SAME W/D as others. I don't know where you get Epileptics don't suffer w/d, but you're misinformed. I'm not being critical, just correcting you, as an Epileptic. I have family who are Epileptic of course, also Schizophrenia runs in my family, w/d is w/d.. it don't care what disease you have or anything, it effects many of us the same.

 

Keryn.

 

 

Keryn,

 

I think you misunderstood me.  I absolutely believe epileptics suffer withdrawal just like everyone else.  I was questioning the position of the article author who stated that epileptics never experience withdrawal, whereas anxiety patients always do.  I think that's nonsense, so you and I are in total agreement. 

 

-Ryan

 

ryan,

 

lol, I'm sorry..I thought you were saying that.

sorry about that.

Here's the thing tho, Epileptics can go way up in mg when it comes to Benzo's, Max dose for Klonopin is 20mg..

But honestly, I've seen more use Valium, it seems to keep its Anticonvulsant property longer.. whereas Klonopin loses that property over several years if not sooner.

I've seen Epileptics on more than one Benzo, I'm not pro-Benzo, but in some cases..It may have its place.

 

Who is the Author of this?

 

Keryn.

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  • 3 weeks later...

The idea that there is no mechanism for the withdrawal is quite stupid. It has been found--the down regulation of GABAA receptors.

 

Such talk contradicts even the FDA which says that benzodiazepine use over four weeks will produce withdrawal.

 

Finally, even if it were psychosomatic--what do you think causes somatic disorders? That's right, increased anxiety. And seeing as you didn't have the symptoms before benzo use, it must be a new anxiety. And what's the only thing that's changed? That's right, withdrawal of the benzo.

 

There are just people out there, even doctors, who like to remain ignorant, and force other people to do the same. They like their anti-druggie prejudice, and finding out that they may be causing drug addiction compels them to believe anything that would make them not guilty.

 

We're at one of the best times with benzo withdrawal: the majority opinion is that it is real. Now all we need to do is convince people of how long it can last.

 

 

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I'm very late to this discussion, but just to say, I was on 4.5mg Rivotril (Clonazepam) per day to treat a non-epileptic seizure disorder (Myoclonus). It was a little over a year when I noticed that it was becoming less effective. Because of this developed tolerance, I withdraw several times (five-week taper, two-week break, and six-week reinstatement) and suffered terrible withdrawal symptoms every time. As far as I was concerned, I was taking an anticonvulsant - I had no idea that I was taking an anxiolytic/hypnotic, related to Valium, Librium, Mogadon, etc. (which I had heard of, but no experience, but just enough knowledge to know they were something unpleasant). I had no pre-existing anxiety problems, nor did I suffer from sleep issues to speak of (it did take a few years for me adapt to the jerks which interfered with me dropping off to sleep, but that is all, and this was resolved before being prescribed Rivotril). So, I had no expectation of suffering anxiety, insomnia, headaches, nor neuro-symptoms completely unrelated to my neuro disorder, but I suffer I did! This happened every time time I withdrew, and even with my, final, six-month taper.

 

I have come across other people prescribed benzodiazepines, who, like me, had no understanding of what class of drug they were taking, to treat "physical" problems. Still, they too suffered the usual withdrawal symptoms.

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[f0...]

Colin,

 

Some of the reason I was prescribed Klonopin was because Myoclonus to a point, they didn't know. I had jerks before Klonopin.. I see a Neurologist + Psychiatrist Neuro-Psych who prescribes the Valium to taper.

If I'm Epileptic, they do not know, as I have had a few seizures in my past, especially as a child.

And I'm on a Epilepsy forum, hardly ever go there just to get information and I have seen member's there on multiple Benzo's.

I was told by this Neurologist I could go to 20mg of Klonopin a day, I said no.

20mg.. who could function on that!

 

Keryn.

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