Benzodiazapines

[Capecodder]

@Capecodder

I second that, and then take it to the 10th power. The secret to any successful taper is slow, slow, slow. I know that it's tempting to try to get off this shite super-duper fast and attempt to get back to a normalish life, but that way lies disaster, and as close to a guarantee of a failed taper and a return to a high dosage as you can get without doing a hard-cut.

The TW indicates that your brain and GABAa receptors have already been rewired and down-regulated. A fast taper doesn;t give either of them time to react, adjust, and settle down. They need time, often a lot more than you'd like, to heal between cuts, even the very smallest ones.

Taken very slow and with small cuts, the success rate is pretty encouraging.

@Yippeki Yow, thank you! It helps to know what’s happening, and it makes so much sense as you explain it.

 

[YippeeKi YOW !!]

@Capecodder
@Seadragon says that he posts in the threads here less and less. If you can't raise him with a tag, try PMg him thru your 'Inbox', top right on every page ....

 

[YippeeKi YOW !!]

None of us are told this, and given the chance to decide with informed consent.

I agree. It's pretty close to criminal, and when that's followed by the usual denials that Drs express when a patient tells them that they're having terrible symptoms and difficulties with their medication, it passes the 'close' part. To be told that "It's all in your head ....", or "....no one else has reacted that way,......", or" ....these drugs don;t do that ....", or the piece de resistance, " ....you don;t need less drugs, you need more ....." pushes it well past the 'close to' part, and right over the cliff.

It would be like a car salesman telling a prospective customer that the make and model they're about to buy is on the 'Pending Multipl Recalls' list ....morally correct, professionally suicidal.

It helps to know what’s happening,

I'm soooo glad it's helped. If I can think of anything else that would be useful to you, I'll post it and tag you

 

[Seadragon]

@Capecodder

I second that, and then take it to the 10th power. The secret to any successful taper is slow, slow, slow. I know that it's tempting to try to get off this shite super-duper fast and attempt to get back to a normalish life, but that way lies disaster, and as close to a guarantee of a failed taper and a return to a high dosage as you can get without doing a hard-cut.

The TW indicates that your brain and GABAa receptors have already been rewired and down-regulated. A fast taper doesn;t give either of them time to react, adjust, and settle down. They need time, often a lot more than you'd like, to heal between cuts, even the very smallest ones.

Taken very slow and with small cuts, the success rate is pretty encouraging.

Yup, exactly right!

 

[Seadragon]

Yes. It is not a matter of if, but when. None of us are told this, and given the chance to decide with informed consent. I knew I could become dependent but was led to believe

@Seadragon, thank you! Congrats on a successful taper, and good news to hear you have recovered!!

I’ve been so stuck after having to switch brands when I was already in tolerance. Is the best way to reach Fred via a reply in this thread (ie @Fredd)?

@Capecodder He usually posts when he's around (rarely) in the B12 section of the forum.

You could try alerting him by responding to one of his posts over there and tag him (put @ in front of his name and that should alert him) or maybe try PM-ing him as well and try again if he doesn't respond at first as he is often busy and has other commitments.

 

[paul80]

@YippeeKi YOW !! Just to let you know whats happening. The drug clinic sent a nurse to take down all my info and then said a consultant would make a plan and they would get back to me the next week but that's about 4 weeks and i've had no word back. Was busy coming off anti epilepsy pills that made me feel worse anyway. Gonna chase them up after the new year.

So still taking the xanax every night, my sleep is ok now but i don't trust it to last anymore. I need to get off it soon.

 

[YippeeKi YOW !!]

The drug clinic sent a nurse to take down all my info and then said a consultant would make a plan and they would get back to me the next week but that's about 4 weeks and i've had no word back

If you haven't already, call the clinic and tell them you to move forward with this and need an update, and failing that you'll need to find another option thru the same Dr that recommended them to you.

Was busy coming off anti epilepsy pills

Dilantin or Klonopin or something else?

So still taking the xanax every night,

You really don;t have another option right now, absent any tapering plan or assistance.

I doubt if this was what your GP had in mind when he recommended the clinic. Do give him/her a call. This is incredibly sloppy and unprofessional behavior, not to mention reckless endangerment.

Not that anyone seems to give a crepe about professional commitment and behaviour any more. Bah, humbuggery .

 

[paul80]

Yea i phoned them today, left a message for them. they have been very unprofessional but i think they'll get back to me eventually.

The drug i was on was Epilim Chrono but i had to stop it as it seems to make all my M.E symptoms worse, i couldn't handle the futher lack of energy. I just got EEG results that confirm i do have epilepsy though, so when i see the neurologist in two weeks she is probably going to tell me i must take the pills. So i don't know what i'm going to do there, seem to be screwed either way, then the xanax withdrawl on top of that.

 

[YippeeKi YOW !!]

So i don't know what i'm going to do there, seem to be screwed either way, then the xanax withdrawl on top of that.

Agreed, that's a heavy load.

Take one thing at a time. Stabilize the epilepsy maybe, then work on the Xanax. Maybe you could talk your provider into switching you to an equal dose of diazepam, at least that way you'd be on the road to tapering off, even if you can't manage it right now.

There's a lot of other epilepsy drugs, some better than others. If Epilim Chrono doesn't agree with you, your Dr is going to need to find a way to accept that and find alternatives that are better.

More later when I'm in better shape. A little wobbly right now.

Keep on punchin', yes?

 

[paul80]

My neurologist and the drug clinic doctor spoke and came up with a plan for me. Stop the Xanax, and 20mg of Clobazam at night for a month, then 15mg for a month then 10mg. At the same time increase Epilum slowly.

Neulogist thinks the Clobezam will be better for my sleep and it's good for sezure prevention.

@YippeeKi YOW !! Thanks for the advice btw, i appreciate it.

 

[YippeeKi YOW !!]

Neulogist thinks the Clobezam will be better for my sleep and it's good for sezure prevention.

Thank you so much, paul, for keeping in touch re this. I'm not sure that I agree with your drug clinic Dr about stopping the Xanax cold turkey, and I'm not sure I understnd the rest of your post. Do they mean to start you on 20 mg of Clobazam, or are you stopping that to.

If I'm understanding this, it looks like they're transferring you from one drug to another, which is not necessarily a bad thing. I think their transfer plan is too fast, but all Drs want any involvement with taking people off these drugs, or transferring them to another one, to be as fast as humanly possible, overnight if they could get away with that. They're the experts and know your history way better than I do.

Keep an eye on your reactions, and don't be shy about bringing them energetically to your various treating Drs attention. You'll have to be your own advocate, but if you start getting withdrawal symptoms, and believe me, you'll know 'em when you feel 'em, let them know immediately and request a slower transfer, which will let your brain and CNS adjust better to the loss of the old med and the addition of the new. This isn;t like changing the fluid in your car's transmission.

Sorry for the rushed post and the typos .... not at my best right now. Not terrible, just a little foggy ....

Keep updating, please. You've been on my mind.

 

[2Cor.12:19]

My neurologist and the drug clinic doctor spoke and came up with a plan for me. Stop the Xanax, and 20mg of Clobazam at night for a month, then 15mg for a month then 10mg. At the same time increase Epilum slowly.

Neulogist thinks the Clobezam will be better for my sleep and it's good for sezure prevention.

@YippeeKi YOW !! Thanks for the advice btw, i appreciate it.

@paul80 - I’m holding a good thought for you. Please keep us posted. I see my neurologist tomorrow to discuss my taper.

 

[2Cor.12:19]

Thank you so much, paul, for keeping in touch re this. I'm not sure that I agree with your drug clinic Dr about stopping the Xanax cold turkey, ...

Keep an eye on your reactions, and don't be shy about bringing them energetically to your various treating Drs attention. You'll have to be your own advocate, but if you start getting withdrawal symptoms, and believe me, you'll know 'em when you feel 'em, let them know immediately and request a slower transfer, which will let your brain and CNS adjust better to the loss of the old med and the addition of the new.

Keep updating, please. You've been on my mind.

@YippeeKi YOW !! @paul80 - these were my thoughts too. Hopefully the Drs know whats best Paul’s particular situation, but it’s true we have to be our own advocates. If it’s too fast tell them so. Good luck!

 

[YippeeKi YOW !!]

I see my neurologist tomorrow to discuss my taper.

I'll be holding a good thought for both of you, @2Cor.12:19 ..... onward and upward !!!!

 

[paul80]

Yes i started the 20mg clobezam on Saturday night, it seems to feel good for sleep, not had any withdrawl effects, it seems to do the same job. And at least i know i'm getting a pure drug, the xanax i was taking was black market so it could have been cut with anything.

Thanks @2Cor.12:19 good luck with your appointment.

 

[YippeeKi YOW !!]

And at least i know i'm getting a pure drug, the xanax i was taking was black market so it could have been cut with anything.

You're absolutely right .... just be on the alert for fast-transfer effects and you'll be totally fine !!! In fact, better than fine, what with decent meds and Drs

 

[paul80]

I started the reduction from 20mg clobezam to 15mg on saturday night. so 15mg Saturday and last night and feel really terrible today. Do you think it could be withdrawl so soon? @YippeeKi YOW !!

It's confusing because i'm on the anti epilepsy pills too and getting side effects but nothing as bad as this.

If so i might need to ask to go slower.

 

[YippeeKi YOW !!]

Do you think it could be withdrawl so soon? @YippeeKi YOW !!

Yes. You've been on it for a bit over a year now I think, so your brain / CNS are pretty dependent on it, and the removal of even a small amount can cause a large ripple effect in some people.

Clobazam has a half life of 18 hours or so, which is sort of medium-ish in terms of benzos, with some sites stating its half life at about 38 to 48 hours. This is deceptive, because that longer half life is due to one of its primary metabolites which doens;t have the punch or effect of the whole drug, and is much less active....

I'm assuming (please forgive my memory .... going thru a not terrific patch right now, so the wonder is tht I can remember anything. At all) that you're taking this as an adjunct to anti-seizure medication, which makes it harder to calculate a taper, and even more critical to err on the side of low and slow. Slowest and lowest is good too.

If so i might need to ask to go slower.

It sounds like you really do need to go a LOT slower. Everyone reacts differently, and your treating clinic Dr is probably basing your initial treatment on experience with other patients, who aren't you, and may not have the same complications that you do.

You seem to be going thru withdrawal symptoms already, maybe take the hint and pass it along to your treating team as a pleasantly firm request.

Never feel that 'they' know best. They don't. They know a lot, but they're not you. You have much better and wider and deeper knowledge of 'you' than they do. If you feel that you need to slow down, and from the sound of it that would probably be a good idea, don;t hesitate to insist on it, pleasantly and non-challengingly, but insistently.

This is going to be long rough ride, and if you can minimize the rough part, the odds of a successful taper are exponentially higher than if you try to push thru a too-fast taper. Their interest is getting you off the drug as fast as possible. Your interest is getting off it as gently as possible, and if that takes 3 years, then that'll be the Silk Road.

Tag me anytime for hand-holding, reassurance, an alternate opinion, a sounding board, whatever. I'm here, not all the time, but pretty steadily.

Keep on punchin' !!! When this is over you'll be so grateful you're shot of it !!!

 

[paul80]

Im thinking of asking the Neurologist if can i just wait till my body get's used to the anti epilepsy drugs (epilim) before starting to reduce the Clobezam. Epilim have pretty bad side effects with energy and tirdness and the docs just don't appreaciate how much worse these things are when you have M.E.

You notice when you speak to them they never even mention M.E.

Anyway, how are you doing? hope your feeling ok and thanks for sharing your knowlege with me.

 

[YippeeKi YOW !!]

Im thinking of asking the Neurologist if can i just wait till my body get's used to the anti epilepsy drugs (epilim) before starting to reduce the Clobezam.

For some reason, I thought that they'd already done that. It only makes sense. Hard enough to go thru a taper, but going thru that while your body is still adjusting to new medication makes it expoentially harder, especially in terms of figuring out what's doing what ....

You notice when you speak to them they never even mention M.E.

It doesnt exist for them. If you're referring to your taper Drs, they have no interest in anything that's outside the taper protocol ....

Anyway, how are you doing? hope your feeling ok and thanks for sharing your knowlege with me.

I don't know if you meant this message for me, no tag, but I'll just assume you did .

I'm really happy to be able to help in any way that I can, anytime that you need any kind of input or sounding board, ever keeping in mind that I'm not a licensed medical-anything

I'm doing OK, in the up and down way of this irritating little yo-yo of an illness. It's hard to have a life when you have no idea where you'll be the next day, or even the next couple of hours, hi-ho .

Still, its waaaaaay better than the bad old days, so I'm grateful .