Flumazenil for Protracted Symptoms

I know this is a contraversial subject, but I am wondering if anyone has done any research on this.  My doctor has recommended this type of treatment.  He said several of his patients who were still taking benzos have done this as a "rapid detox" and all said it was a miracle treatment.  From what I have read, it could be extremely dangerous to do this if you are still tapering off benzos.  But for protracted symptoms weeks or months after the final dose, it does seem like it would work.  I read one small study of 11 patients who were administered this drug 1 - 5 months after their last dose of benzo and it eliminated symptoms in all of them. 

 

Thoughts?

I know this is a contraversial subject, but I am wondering if anyone has done any research on this.  My doctor has recommended this type of treatment.  He said several of his patients who were still taking benzos have done this as a "rapid detox" and all said it was a miracle treatment.  From what I have read, it could be extremely dangerous to do this if you are still tapering off benzos.  But for protracted symptoms weeks or months after the final dose, it does seem like it would work.  I read one small study of 11 patients who were administered this drug 1 - 5 months after their last dose of benzo and it eliminated symptoms in all of them. 

 

Thoughts?

 

I only know of people using it as the rapid detox. I remember someone here doing the detox and I don't think it went that well, you could do a forum search to find out who that was. I just have no knowledge of using it for PWS. Just keep doing your research. 

Hi Ryan,

 

Nice to see you!  Is this question for your information only or are you suffering so much you're looking into it for yourself?

 

Pam

Hi Ryan,

 

Nice to see you!  Is this question for your information only or are you suffering so much you're looking into it for yourself?

 

Pam

 

I am considering it because I have access to the treatment and I am not completely recovered.  I would not say I am suffering to the point that I can't cope, but I still have a lot of cognitive/perceptual issues lingering.  I am going to wait it out for a couple more weeks and see how things go.  Just to be clear, I think it is insane to use this for rapid detox.  It does seem that it would work for protracted symptoms in that it displaces any benzodiazepine still attached to the receptors and "resets" them back to normal.  The only issue is that the drug has a short half-life and has to be administered through an IV over 2 - 4 days for long-lasting effect. 

I'm sorry you're suffering so much, what you're considering sounds really scary to me.  But I'm very uninformed about this process so of course that equates to fear.  I hope you'll let us know what you decide.

I'm sorry you're suffering so much, what you're considering sounds really scary to me.  But I'm very uninformed about this process so of course that equates to fear.  I hope you'll let us know what you decide.

 

It's not scary if you are off benzos, just a little daunting because of the duration of the treatment.  Flumazenil has been used for years to reverse benzodiazepines in cases of surgery sedation and overdose. It is a very safe drug without side effects as long as you are not still taking the benzos.  Unfortunately, there are some unscrupulous doctors who use it for "rapid detox" for benzo-dependent people, which is very dangerous and often results in immediate acute withdrawal.

 

I am not there yet, just weighing my options.  Things are not so bad, it's just the waiting game that stinks.  

Hi Ryan,

 

Thanks for your valiant efforts to stress that this treatment is not advisable if still taking benzo's.  I do recall now that you mention it reading about this.  I'm glad you're going to give it some more time because I know for a fact that you will heal eventually if you wait it out.  This way, I'm not sure if you end up getting rid of one thing and getting another.  I've long since stopped believing that we get out of this without paying a huge price. 

 

Are you sleeping?

 

Pam

Hi Ryan,

 

Thanks for your valiant efforts to stress that this treatment is not advisable if still taking benzo's.  I do recall now that you mention it reading about this.  I'm glad you're going to give it some more time because I know for a fact that you will heal eventually if you wait it out.  This way, I'm not sure if you end up getting rid of one thing and getting another.  I've long since stopped believing that we get out of this without paying a huge price. 

 

Are you sleeping?

 

Pam

 

Normally I would agree about giving up one for another.  Flumazenil has no effect on the brain, though, other than attaching to the benzo receptors thereby resetting them.  It essentially forces normal function.  You cannot build a dependency to the drug and it has no adverse effects because it doesn't "do" anything except displace benzo that is still attached to the receptor.  It is nothing like the other drugs that work on GABA, in fact, it is by definition the opposite of those drugs.  Make sense?

 

I am sleeping OK, not great.  This continues to be my biggest challenge.  I have been having a lot of sleep that is characterized by vivid dreams where I feel only partially asleep but I am never refreshed the next day.  Plus, I wake up every night at exactly 1:30, 3:30, and 6:30.  Not sure what that's about. 

You've done an incredible amount of research, I have confidence you'll make the right decision whatever it may be.

 

Hey, I sleep in 3 hour increments too!  I'm thrilled I can do that and go back to sleep.  Waking up every night at those specific times reminds me of a Stephen King novel or something, kind of creepy.  That dreamfilled sleep doesn't seem to be very restful, I've heard many members talking about it. 

 

Here is a link about a study of using flumazenil for protracted symptoms.

 

http://www.bcnc.org.uk/flumazenil.html

 

It looks like it may work for some people.  It looks like it did not completely eliminate symptoms, but did improve them for many people.

 

Ryan how often would you have to get these treatments?  From what I get out of this study, its pretty long term treatment, with the effects being rather short term.  It's interesting that you bring up this treatement, this is the first time I had heard of it, but there is alot of info out there.  Thanks for bringing up the topic, it may help alot of people.

 

Tim

 

Here is a link about a study of using flumazenil for protracted symptoms.

 

http://www.bcnc.org.uk/flumazenil.html

 

It looks like it may work for some people.  It looks like it did not completely eliminate symptoms, but did improve them for many people.

 

Ryan how often would you have to get these treatments?  From what I get out of this study, its pretty long term treatment, with the effects being rather short term.  It's interesting that you bring up this treatement, this is the first time I had heard of it, but there is alot of info out there.  Thanks for bringing up the topic, it may help alot of people.

 

Tim

 

Tim,

 

The issue with Flumazenil is that it has a short half life and it has to be administered via IV so it is never easy or quick.  The clinics that do "rapid detox"  typically administer the drug constantly through an IV over 4 - 7 days.  What is being recommended for my situation is an IV drip of about 2 hours for 5 consecutive days with possible 2 or 3 additional treatments 10 days later.  What I am told is that this works by displacing benzo molecules that remain attached at the receptor sites, which allows the body more rapid elimination.  More interesting for my situation is that is "resets" the receptors to their normal function and they will not "un-set" unless a new dose of some GABA agonist drug is introduced into the body.  As I understand it, many protracted symptoms are not caused by any residual benzo molecules aggrevating the receptors but rather by the brain's inability to reset the receptors quickly on its own. 

 

The tricky thing that I still can't wrap my head around is that for the benzo-dependent person, Flumazenil will throw them into immediate withdrawal.  On the other hand, for a person who has discontinued use of the drugs, the Flumazenil will immediately relieve lingering symptoms.  But when is a person "no longer dependent?"  What is the time threshhold that divides being dependent and being in protracted withdrawal?  Noone seems to be able to answer this question. 

 

I am going to wait a little while and see how thing shake out.  I am only 15 days off Ambien so I am not shocked to still be having symptoms.  The good thing about this is that you can hit the rewind button with Flumazenil.  They can give me a small dose and if it makes me feel better they can take it all the way.  If it makes me feel worse, they can stop and the short half life means the effect will wear off in a couple of hours and put me back where I started. 

 

-Ryan

Ryan,

 

Keep us updated on what you decide to do and thank you for the information.  It seems you have done alot of research on the topic.

 

I see why this would not work during a rapid detox. It makes complete sense.  Thats a good question about benzo dependency.  If you do decide to do this, make sure you let us all know how it goes, and congrats for getting off the benzos man, that in itself is a tough task.

 

Tim

Ryan,

 

Keep us updated on what you decide to do and thank you for the information.  It seems you have done alot of research on the topic.

 

I see why this would not work during a rapid detox. It makes complete sense.  Thats a good question about benzo dependency.  If you do decide to do this, make sure you let us all know how it goes, and congrats for getting off the benzos man, that in itself is a tough task.

 

Tim

 

I'm not saying it can't work for rapid detox, just that it would be extremely dangerous.  I had a discussion with a friend of mine who is an ER nurse and they said that it is widely known to cause abrupt seizures in benzo-dependent individuals.  The method utilized in rapid detox is to load the person up on an anti-convulsant like Gabapentin or Tegretol and then slowly increase the dosage of Flumazenil over several days until the blood levels of the benzo approach 0.  What often ends up happening, especially for people on large or long-term doses, is that they leave the treatment in a state of severe acute withdrawal and have to reinstate.  Every individual has such a different experience so it would not make sense to take such a huge risk when slow titration is proven to be the most effective method of withdrawal.  I know that there are cases of benzo toxicity in which a rapid detox is a much better option than a cold turkey withdrawal. 

 

If the medical community ever figures out anything about these drugs, this could be developed as a very effective co-treatment after slow titration which could really eliminate a lot of the long term symptoms and the anxiety about "when is this going to end?"  For now, it is mostly a method used in nearly-black-market clinics for people looking for an easy way out or for those who are too desperate to keep trying it the hard way. 

 

If I do decide to take the treatment, I will take meticulous notes and share them if the mods think this is appropriate. 

Hi Ryan,

 

Thanks once again for bringing up such an interesting topic!  We've talked of this drug before here.  I actually brought up a conversation about it a few months ago....back in May or so?  It seems quite controversial as I recall.  But...I'd sure be interested to read the "small study" you refer to where it helped the people. 

 

I'd also be VERY interested to hear of your experiences, should you decide to try it.  Many of us would!  Hey, is nine months off too late to try it?!!! 

 

It makes sense that the benzo-dependent person would go into immediate withdrdawals with Flumazenil.  From what I understand about it, the drug does something to stop GABA receptors from accepting any further benzo.  Which would be exactly the same as instantly stopping the benzo, right?  And hence, immediate withdrawals.  And of course that's why it would "cause" seizures as well, just like being into total cold turkey withdrawals would (for some people). 

 

What state do you live in...just curious.  If that's too personal, please ignore. 

 

adelia

Hi Ryan,

 

I am the person who did the Flumazenil detox...twice.  As for it working for detox, it definitely pushes the benzo out of the receptors.  It is pretty bad.  It's like an over-rapid detox and can't be done without anti-seizure medications, beta blockers and, sometimes also anti-psychotics.

 

I only took the anti-seizure meds for a short while but the withdrawals were very brutal, and I've done 5 cold turkeys.  This last cold turkey that I did one year ago was like candy next to the Flumazenil.

 

About Flumazenil resetting benzo receptors...I did extensive research before I went and was led to believe that this was a fact.  I read all the studies for months and even spoke extensively with Dr. Coleman who does the detox.  I spoke to people who had done the detox and also contacted Dr. Currie in Australia who started it all.  I was very hopeful at that point but didn't realize that most of the patients who were doing well were on either Neurontin or Lyrica as well as Seroquel or Zyprexa...and a beta blocker.

 

I had seizures after the second one, right there in the bed.  I didn't have them after the first detox because it was from 10mg valium.  The second one was from 2mg klonopin. 

 

After about 6 weeks of constant severe withdrawal symptoms I went and got more flumazenil because I was told that it would reset my receptors and make me well with only a few more treatments.  It did nothing but empty my wallet and make me feel worse.

 

Now, here's the thing.  Flumazenil is not only an antagonist at benzodiazepine receptors but also a partial agonist.  It seems that it helped in the initial hours after I took the 'boosters' but a day or two later my withdrawal symptoms increased.  I believe the initial presentation of reduced symptoms was from the agonistic properties of the drug itself.

 

I'm not sure of the mechanism behind all of it but I believe that what it did was mess with the receptors that were already trying to repair themselves and caused more problems.  Because of the repeated flumazenil boosters I was talked into I ended up having to revisit benzos again to stop the severe withdrawal that the boosters caused.  I was already off for 6 weeks.

 

I don't believe it helps anyone.  If it does randomly help people, I think those people were in the lucky percentage of folks who would have a decent time coming off of benzodiazepines anyway, and there are plenty of people out there who can.

 

We just weren't that lucky..

 

Donna

Hi Donna,

 

I am sorry to hear about your experience but I do appreciate you sharing it.  Unfortunately, your story is very much like most of the others I have read online.  A lot of people have suffered at the hands of doctors out to make a quick buck.  I have never understood how this could be sold as a detox method for benzo-dependent individuals.  The science behind it just doesn't make sense. 

 

To be clear, I am off the benzos - 75 days off Valium and 15 days off Ambien.  I have definitely been through the acute withdrawals and I am now just dealing with some cognitive/perceptual issues that seem to be lingering.  I have access to a doctor who is willing to administer the Flumazenil without the huge expense that the Coleman Institute or the others like it charge.  From what I am reading, there is very little downside for people who have already withdrawn from the drug and potentially a lot of upside.  I am intrigued, though, at what you said about Flumazenil being a partial agonist at the benzo receptor sites.  What I have read is that the drug tightly binds to the receptors and in doing so displaces any remnant benzodiazepine but that it has no other action.  I will definitely have to look into this further. 

 

-Ryan

Wow Donna, thanks for that!!! I had no idea you'd been through all that.  Thank you so much for sharing.  Now I know who to ask. 

 

adelia

Adelia,

 

I did so much research on it that it was coming out my ears. 

 

I think, if Flumazenil was really the cure for  benzodiazepine withdrawal syndrome it would be a lot more popular.

 

FYI, Gayle did it too.

 

Donna

I know you're right Donna.  That's the conclusion many others here had come to as well.  If Flumazenil worked well, then HAY!!!!! we'd all be all over it, wouldn't we? 

 

For me, the best kind of "miracle" cure I've found to help benzo withdrawals is simply amino acids.  We eat them everyday anyway (protein), but taking them therapeutically has been a godsend to me.  And they are definitely getting more popular as time goes on, for everything from benzo w/d's to ADD, ADHD, and anything related to the brain actually.  Some of them are precursors to GABA. 

 

Anyways, thanks again for sharing.  You are a font of knowledge on this!  Gayle did too, that's interesting....

 

adelia

Unfortunately, flumazenil does not at present offer a practical cure for protracted symptoms. The drug has to be infused intravenously and is very short acting so that symptom relief is only temporary. The drug cannot be given to a person who is still taking benzodiazepines as it precipitates an acute withdrawal reaction. However, although protracted sensory and motor symptoms may sometimes seem to be almost permanent, they do in fact decline in severity over the years, even without flumazenil, and they do not signify a major neurological illness. Such symptoms may be partially alleviated by relaxation techniques; some motor and sensory systems may respond to carbamazepine (Tegretol) and motor symptoms may respond to propranolol (Inderal).

 

A quote from Dr. Ashton's manual

Has anyone had this treatment after they had completely withdrawn from benzos?  All the experiences described so far have been during a rapid detox.  This is a very different scenario.  Let's not dismiss a potentially good treatment just because it hasn't gained popularity among the medical community.  They are in the dark ages when it comes to prescribing these drugs and treating people who have come off of them. 

Ryan,

 

I told you that I did have it after being off of benzos and it didn't do anything but make things worse.  You would have to walk around with an IV pump 24 hours a day for it to work.  It doesn't do anything to reset receptors or I would have been 'cured' a long time ago.  Also, like I said, if it worked everyone would be on the bandwagon.

 

Donna

Donna,

 

I thought you were still experiencing acute withdrawal after an initial rapid detox when you received the follow-up treatments.  Is this correct? 

 

I am starting to feel a lot better so I am probably not going to get this treatment.  I'm glad we are having a discussion about it, though.  I have heard very different stories from person to person so I am trying to figure out if there are common characteristics among those who had some success with this stuff.  I spoke to a patient of my doctor who received Flumazenil over several days after six months post-benzo and they claimed it resolved most of their symptoms.  I have also heard success stories of actual rapid detox, but those seem to be less frequent than the horror stories like you told. 

 

-Ryan

Ryan,

 

Here's my question, though.  Why wouldn't it do what it was supposed to do when rapidly detoxing?  What would make it work, say, 6 months down the line and not at first?  I would personally want answers to these questions and scientific proof or studies to back up the reasons.  It would be awesome if there were a large group of people who were helped in this way, further into the healing process.  I just haven't seen it as of yet. 

 

Donna

 

 

Donna,

 

The theory about it as it has been explained to me is that when a person is physically dependent on the benzos, either during use or shortly after discontinuation, there is a large amount of the drug still in the body.  So when Flumazenil is administered, the GABA receptors very temporarily displace the benzo but as soon as it wears off more benzo grabs on to the receptors and the cycle repeats.  This happens very quickly due to the short half life of the drug so the person's brain is being thrust back and forth between two opposite and extreme states.  On the other hand, when a person is well off the benzos (several weeks or months out), there is very little drug left in their system.  The withdrawal symptoms are mostly caused by the damaged receptors which have not yet "corrected" themselves.  Flumazenil is known to reset the normal function, but this may be a very temporary change.  It is argued, though, that if the drug is administered in a constant drip over a long period of time (like 4 - 7 days), the receptors will eventually begin to function normally on their own and will not return to the damaged state.  This is basically a reversal of what happens when we become dependent on the drug - the brain at first simply responds while the drug is in our blood stream, but after a while it becomes "trained" to not function normally without benzos. 

 

The theory makes sense but as we all know everyone's experience is very different.  There is a huge variance from person to person in how long the drug is retained in the body, how long the brain takes to reset on its own, etc.  What definitely seems clear is that there is usually a positive effect on longer-term protracted symptoms when the person has been free from benzos for at least 3 months.  How long those benefits will last is less  clear.

 

-Ryan