FLUMAZENIL AND BENZO WITHDRAWAL

[[fa...]]

There IS no protocol or approach in addressing ANY solutions for patients in protracted withdrawal.

 

All the current literature and treatment modalities that exist pertain to patients in inter-dose or acute benzodiazepine withdrawal.

 

Why?

 

Probably because the various inter-disciplinary medical communities are utterly mystified by the concept of someone experiencing crippling protracted withdrawal 7 years off a controlled taper.

 

That´s right. I¨m 22 months off and completely crippled. If I had a possibility of trying flumazenil I would do it, no doubt.

 

So far, all my efforts have failed to find a patient that at least tried the flumazenil therapy.

 

Word on the street has it there's mixed results.

 

I don't know, Laudante, the idea of having glutamate running virtually unopposed for the 30-day period seems freaky.

 

I'm sure it's a really low dose, which brings into question its therapeutic value to begin with.

[[La...]]

But why a 30 day period? The substance´s life is of 1 hour.

[[fa...]]

But why a 30 day period? The substance´s life is of 1 hour.

 

Well, I think the medication is delivered continuously through an infusion pump - similar to the ones people use for insulin.

 

So, it would be delivered throughout the day in a continuous dosage.

 

The 30 days is just what I've consistently heard. If you were tolerating it fairly well, the doctors might go longer, depending on their medical assessment.  I guess it would depend on the clinic.

 

Flumazenil is still only available as an in-patient and through an I.V. line, so this is all very experimental.

[[ra...]]

Two interesting points.  The first is the confirmation that there is no protocol for us.  I have said before, my best estimates of that we are the unfortunate 0.4%.  I am not convinced that this ends for all of us, at least to a reasonable degree of quality of life.  I am not convinced that we would not benefit from SOME kind of GABA booster to stay on for the rest of our lives, particularly if we are near 50 years old.  It does not have to be benzos.  What if progesterone cream made all of our symptoms go away?  Or phenobarb?  Or hensbane or whatever?  There is also this part of me that thinks, "if I just hold on a little longer."  I am exploring this now, and will report back in a few weeks.

 

Second, I heard about a guy/gal who had a flumenazil implant, similar to to the kind used for birth control.  I do not remember who it was, or what happened to him.

 

Be well and good luck,

 

Ramcon1

[[La...]]

A doctor friend got 32 flumazenil shots for me in Mexico. I¨m just too bad to fly now, but maybe next week I will and try it. I¨ll let you know what happens. Now, the fact that there is no protocol for us doesn´t mean it doesn´t work. We´ll see. I¨ll be, once more, a ratlab. Anything´s better than this shit. And don´t lose hope. Ramcon, have you tried gingko? I healed me 90% for many months until I relapsed due  to somemedicines I had to take for a physical problem, and since thenit has helped me a lot, but each time less and less. Now it doesn´t seem to help much.  :'(

 

I think it´s a sort of natural flumazenil, so I would deffinitely give it a try.

[[fa...]]

Two interesting points.  The first is the confirmation that there is no protocol for us.  I have said before, my best estimates of that we are the unfortunate 0.4%.  I am not convinced that this ends for all of us, at least to a reasonable degree of quality of life.  I am not convinced that we would not benefit from SOME kind of GABA booster to stay on for the rest of our lives, particularly if we are near 50 years old.  It does not have to be benzos.  What if progesterone cream made all of our symptoms go away?  Or phenobarb?  Or hensbane or whatever?  There is also this part of me that thinks, "if I just hold on a little longer."  I am exploring this now, and will report back in a few weeks.

 

Second, I heard about a guy/gal who had a flumenazil implant, similar to to the kind used for birth control.  I do not remember who it was, or what happened to him.

 

Be well and good luck,

 

Ramcon1

 

It seems as though you are asking the right questions, while simultaneously questioning the answers. This is nice to see.

 

Ever since we started conversing in the various forums, you've systematically developed an outline with a plan of attack, options, and healthier ways of coping.

 

I believe you're at the edge of a breakthrough.

 

Please keep us updated on your progress and what you've done to make strides in your healing. This gives others hope.

[[Ko...]]

I went to the Coleman clinic in Seattle a year ago when at was 14 months off.  Their protocol was subcutaneous injections. First 4 days they injected me in my stomach area 4x each day, then gradually on the last three days they tapor the injections until you're down to one.  This treatment didn't help me at all. They said it may take some time to see results. As far as I'm concerned it was a total waste of money.

 

I'm now in my 27th month and I hate to report it, but this year has been my worst yet. Very painful. I have recovered mentally though. I'm just hanging on with no life waiting to get better.

 

If any of you have more questions about the Coleman Institute PM me.

[[fa...]]

I went to the Coleman clinic in Seattle a year ago when at was 14 months off.  Their protocol was subcutaneous injections. First 4 days they injected me in my stomach area 4x each day, then gradually on the last three days they tapor the injections until you're down to one.  This treatment didn't help me at all. They said it may take some time to see results. As far as I'm concerned it was a total waste of money.

 

I'm now in my 27th month and I hate to report it, but this year has been my worst yet. Very painful. I have recovered mentally though. I'm just hanging on with no life waiting to get better.

 

If any of you have more questions about the Coleman Institute PM me.

 

Wow. Thanks, Korbe. I can now say that I've actually heard from someone that tried flumazenil treatment.

 

I am so sorry that it didn't work - at all - and that this last year has been miserable.

 

Do you experience ANY windows? Are there periods of ANY relief?

[[Ko...]]

Faultandfracture,

 

No windows, but I do get relief at times. In other words the SX ebb and flow. Lately, it's been a couple of OK days where I'm hurting, but I could still go to the store or get a hair cut followed by horrible days where I can't get off the sofa and barely walk. Very strange and highly unpredictable.

 

Best to you

 

Korbe

[[Ja...]]

Are you feeling more like chronic fatigue type of issues or acute terror type of issues?

A doc wants to detox me and give me flumenazil

Idk.

Would love to hear about your functioning and how you are doing now

[[fa...]]

I've talked to a lady from Australia about her flumazenil treatment since I last posted on this thread...

 

She claimed to have detoxed using flumazenil with the stomach infusion pump route for about a 30-day period. Quite honestly, she didn't have enough good things to say about it, stating, "...I wouldn't know where I'd be if I hadn't done it." I know, I know this is all anecdotal and hearsay, but according to what clinics like the Coleman Institute do, it made some sense.

 

Route and dosage are important when experimenting with flumazenil. It seems direct infusion is this best way, since that's how it's done clinically.

 

She did mention, HOWEVER, she was in a somewhat stable state enough to try it. She mentioned jaw clenching, tics, and insomnia as some of the side effects during the 30-days.

 

This is to be expected and a good reason for a patient to reach stability before trying it.

[[La...]]

I tried it invery low doses and short periods.The side effects were very harsh, with no measurable good results. It´s true thatI had some very nice windows some days or weeks after using it, but I think they are more related with the valproate they prescribed in ER aftrer crashing due to the flumazenil trial. 

 

Valproate certainly worsened me, but a few hoursafter stopping in, a full 2 week window began. I relapsed after those two weeks and tried again a 3-4 day valproate course, with the same result after stopping.

[[fa...]]

I tried it invery low doses and short periods.The side effects were very harsh, with no measurable good results. It´s true thatI had some very nice windows some days or weeks after using it, but I think they are more related with the valproate they prescribed in ER aftrer crashing due to the flumazenil trial. 

 

Valproate certainly worsened me, but a few hoursafter stopping in, a full 2 week window began. I relapsed after those two weeks and tried again a 3-4 day valproate course, with the same result after stopping.

 

I'm sorry it didn't work.

 

With many patients, it's no wonder that flumazenil treatment is a complete bust. Dose and duration would be critical in achieving its most desired and therapeutic outcome; however, so few could tolerate and sustain the treatment regimen.

 

The only success stories I hear are from patients who did the 30-day flumazenil treatment via pump infusion in the stomach. It seems like the dose, duration, and route are key here.

 

These patients most likely had reached some sort of stability with their symptoms. I mean, it could be deadly to have someone who was overrun by glutamate excitotoxicity experiencing insomnia, tremors, excitability, GI distress, and photophobia accept this kind of treatment that would likely make those symptoms worse, adding refractory seizures to the list.

 

Laudante, based upon your signature, I'm guessing you don't live in the U.S.? The only reason I ask is because I see that you had midazolam as part of your treatment regimen. Midazolam (Versed) here in the U.S. is only given procedurally, and no one I know has it in pill form. I work in the health care field, which is how I know.

[[li...]]

I got a 6 day offer, infusion.

 

On clonazepam 2 mg, does anyone think it could work ? I don't see how.

 

 

[[fa...]]

I got a 6 day offer, infusion.

 

On clonazepam 2 mg, does anyone think it could work ? I don't see how.

 

 

 

I agree. Six days just doesn't seem like a long enough time period. However, if you feel you're stable enough to try it, six days could be enough to spark some kind of reaction that starts moving you in the right direction.

 

Would you still be taking clonazepam during this period?

[[li...]]

Nope, C/T.

 

People would start feeling better while getting the infusions ... A pilot, mostly based on experiences in Australia, except that in Australia they use anticonvulsants. And I think we know the odds are that anticonvulsants can protect against withdrawal, at least up to some point, in some people.

 

faultandfracture,

I am anything but stable.

 

What benzo/dose/duration was that lady on ? That really matters ...

[[fa...]]

Nope, C/T.

 

People would start feeling better while getting the infusions ... A pilot, mostly based on experiences in Australia, except that in Australia they use anticonvulsants. And I think we know the odds are that anticonvulsants can protect against withdrawal, at least up to some point, in some people.

 

faultandfracture,

I am anything but stable.

 

What benzo/dose/duration was that lady on ? That really matters ...

 

I'd like to read up on the pilot study you mentioned. I've never heard of people feeling better during the course of flumazenil treatment. Since it binds with GABA receptors at a very high affinity, you have glutamate running more unopposed and issues like refractory seizures become a real concern...is this the relevant impact you were referring to when addressing anticonvulsants?

 

Which type of anticonvulsants? I'm guessing the anticonvulsant/mood stabilizers like Tegretol, Lamictal, and Depakote.

 

I wouldn't waste my time considering flumazenil if you're "...anything but stable."

 

The dose, duration, and benzo type would certainly matter, but I never asked. If I have another opportunity, I'll inquire.

[[li...]]

I've read some anecdotal reports about people feeling better while they are getting the infusions, but how would that work ??

 

I don't have much information about the pilot study. I think that the formal requirment is being on at least 30 mg diazepam or the equivalent. It's a pilot, and it isn't quite finished. Tha plan is stomach/abdomen infusions for 6 days.

 

In the Australian study anticonvulsants are used. Not in the local study. Something like a 1 % seizure risk is mentioned, but people are monitored.

It is well known that anticonvulsants can alleviate W/D symptoms for some people.

 

 

[[Ja...]]

I saw a doctor yesterday who said I am suffering so much during taper I should do detox

He does sublingual flumenazil after the benzo is out of your system

Pheno taper then gabapentin and flumenazil

Thoughts?

I have already kindled

On 2.80 Valium and remeron

Struggling

[[li...]]

Considering all my troubles I shouldn't give advice ...

 

Fortunately your dose isn't that high. Maybe flumazenil could work, but sublingual ?

Aside from that, from my perspective it's guesswork.

[[li...]]

Here's an older BB thread on flumazenil:

 

http://www.benzobuddies.org/forum/index.php?PHPSESSID=7vvrc7qci80q6sc8ldt2i34mu1&topic=49699.20

 

[Guest [Th...]]

I tried the treatment and it did not work.  Just wasted a bunch of $

[[li...]]

How many days, and any adjunctive meds ?

[Guest [Th...]]

1 week with clonidine and zyphexra.  It was a subcutaneous infusion 24-7 for one week.  It may have worked in the sense that the only real symptoms I have left are insomnia and tinnitus.

 

They make a flunazemil cream that can do the same thing and is pretty reasonable.  It is by prescription only, but is under $150 US for a 1 month supply.  The doc gave me two tubes b/c I still tested positive for benzos at the end of the week.  The doc said he didn't know what the percent was and would have to send to the lab for more $$$ so I said no.  He said it was probably under 1% but still enough to be picked up on a drug screen.

[[li...]]

Now, did it work or didn't it !

 

You're contradicting yourself.