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Dr. Bob is Robert Hsiung, MD,
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Posted by qbsbrown on July 28, 2009, at 13:09:39
In reply to Re: Well, doc approved Tegretol now, posted by qbsbrown on July 28, 2009, at 1:03:49
Can you get away with 2 doses? Or does it need to be more? I'm worried about the peaks and valleys.
Worried about it cause it's related to trileptal (dysphoric thoughts images etc), related to tricyclic antidepressant (ugly thoughts images etc).
If it help the withdrawal, and even though it might allow me to leave the house, perhaps it's best that i stay in so i don't have to expose myself to seeing and thinking ugly things.
This was the same w/ every drug, I wouldn't imagine that it'd be different for this one.
One good thing that i might have going, is that it is a drug that i've never taken before (shocker), so it has a greater chance of helping, correct?
All the others i have tried or used multiple times, and they seem to work less and less every time, and have more adverse effects.
Hope you can guide me with the dosing.
Regards,
Brian
Posted by SLS on July 28, 2009, at 20:45:36
In reply to Tegretol dosing Scott?, posted by qbsbrown on July 28, 2009, at 13:09:39
> Worried about it cause it's related to trileptal (dysphoric thoughts images etc), related to tricyclic antidepressant (ugly thoughts images etc).
Just because a drug is chemically related to another compound does not mean that they both have the same pharmacology.
> Hope you can guide me with the dosing.As far as dosage is concerned, your guess is as good as mine. 400mg maybe?
- Scott
Posted by qbsbrown on July 28, 2009, at 21:11:35
In reply to Re: Tegretol dosing Scott? » qbsbrown, posted by SLS on July 28, 2009, at 20:45:36
> > Worried about it cause it's related to trileptal (dysphoric thoughts images etc), related to tricyclic antidepressant (ugly thoughts images etc).
>
> Just because a drug is chemically related to another compound does not mean that they both have the same pharmacology.
>
> > Hope you can guide me with the dosing.
>
> As far as dosage is concerned, your guess is as good as mine. 400mg maybe?
>
>
> - Scott400 looks to be the starting dose for most. And given my reaction to only 500mgs on depakote, and my bad reactions to 150mgs of trileptal, that maybe I should only try half? 150-200.
Are/were we close with the depakote or another anticonvulsant? As sleep was good the first night (bad the second), improved mood, was able to leave the apt, less paranoia, better cognition, just serious dysphoria. But ended up making wd symptoms worse.
This thing is getting bad, to where i can't leave the apartment (I'm home alone til roomie gets home), and just feel psychotic 24/7, and do weird obsessive rituals.
Do most meds not work as well the second time around, or the more often you go back to them? I've taken trileptal and depakote many times, and had worse reactions every time i go back to them. My only hope with tegretol is that i have never used it before, and is the most common med to assist with wd, and that is better for anxiety and sleep.
I'm at a loss man, I don't know what else I can do.
If you had this kind of kindling going on, would you keep on trying other anticonvulsants til something helped a little? Does kindling usually require anticonvulsants?
It's tough, im looking for some relief, but ever time i try something, it seems to make me worse. And that goes for all meds/vitamins/supps/herbs
Regards,
Brian
Posted by qbsbrown on July 28, 2009, at 21:23:56
In reply to Re: Tegretol dosing Scott?, posted by qbsbrown on July 28, 2009, at 21:11:35
Or perhaps try 300mgs, and dose 100mgs 3 times daily w/ the diazepam (I am afraid that it lowers the diazepam blood levels). I would pay for anything for any stress, anxiety, and/or insomnia relief.
But seriously when i was on trileptal 900mgs and was able to drop 30mgs to 10mgs in 10 days w/ no problem, until i cold turkeyed the trileptal, then went back to 30mgs. Is that some serious kindling going on?
My brain is basically petrified at this point, in shock and trauma, and adding chemicals is probably going to make me worse initially, do i need to continue the med even though it might be bothering me?
Back in April, I wanted to attend a zen retreat, but showed up only back on the diazepam, and i was stuck like a deer in the headlights, frozen in fear.
Then i took 300mgs of trileptal, and all of the sudden i was able to attend, and sit at the front of the class. Such a dramatic difference. Although it allowed me to do that, i only took 3 doses and threw it away. I/my brain just hated the feeling of being drugged, when i was my mission to get away from that feeling.
I tried trileptal 2 other times during the taper, and it just made me worse.
But perhaps feeling a little drugged might be a necissary evil for now.
We'll see.
Regards,
Brian
Posted by qbsbrown on July 29, 2009, at 5:40:25
In reply to Re: Tegretol dosing Scott?, posted by qbsbrown on July 28, 2009, at 21:23:56
I took the first dose of 100mgs tegretol around 10pm. Tried to go to bed at 12, and am now up at 3am, sweating more profusely than usual.
I guess this is to be expected, corrrect? They all aggrivate at first.
The same thing happened with me and trileptal 3 months ago, and i was able to attend my zen center and able to stand the stress of being there the following day. I just quit it after 3 doses, when maybe it could have proven effective.
So I need to continue with it correct?
Might be a week adjustment? I was thinking about 100mgs 3 times a day, dosing at same time as diazepam.
Regards,
Brian
Posted by SLS on July 29, 2009, at 5:58:48
In reply to first dose of Tegretol Scott, posted by qbsbrown on July 29, 2009, at 5:40:25
> So I need to continue with it correct?
As you begin to feel that your options are becoming fewer, I suppose that it becomes more important to give things a fair trial. I wish I could guarantee that things will work out with the Tegretol, even though you might have to endure some startup side effects.
> Might be a week adjustment? I was thinking about 100mgs 3 times a day, dosing at same time as diazepam.That sounds reasonable to me. Start low and increase gradually. Just know that you can go up to 1200mg if need be. I can't see needing more than 600mg, though, but this is your experiment to discover the right dosage.
If it works, it will be important to taper the Tegretol slowly so that you don't trigger an already kindled system. But you can cross that bridge when you come to it.
- Scott
Posted by qbsbrown on July 29, 2009, at 6:09:40
In reply to Re: first dose of Tegretol Scott, posted by SLS on July 29, 2009, at 5:58:48
Yeah, I read that they usually used about 200-800mgs of carbamazapine.
A little chest tightness is a little concerning. I've had the heart palpitations during the withdrawal before, but not for a long time.
I hope that it's ok to do this unsupervised.
But like you said, I haven't given anything a fair trial. So we'll see
Posted by qbsbrown on July 29, 2009, at 6:37:00
In reply to Re: first dose of Tegretol Scott, posted by qbsbrown on July 29, 2009, at 6:09:40
Why do you think that none of the benzo "experts" such as Ashton, Peart, or Ray Nimmo talk about kindling, and/or promote the use of anticonvulsants (although Ashton had said that Gabitril might be promising for it's anti anxiety and sleep properties)?
But the published medical studies I've read on kindling, and your theory, make a lot of sense to me, and seem to be accurate.
It would basically be heresy to promote or advocate the use of another medication on a benzo forum to get off a benzo.
That adding any med to an already damaged and compromised CNS would only further hurt it.Some will kick you off if you talk about using a med, or even a vitamin/supplement/herb to assist in coming off of them.
Most are pretty fringe groups/forums it seems, and are extremely anti-psychiatry.
So it's tough to know who to believe. My doc thought that if I was having such a hard time coming down and off, that it would be worth a shot.
Regards,
Brian
Posted by SLS on July 29, 2009, at 8:23:09
In reply to why is kindling not discussed on forums/experts, posted by qbsbrown on July 29, 2009, at 6:37:00
I was so accurate in the formulation of my theories of withdrawal phenomena, it almost scares me. Now, everyone is talking about kindling in peer reviewed medical journals.
Nobody has mentioned phenytoin (Dilantin) yet. Perhaps it has been shown to be ineffective. It would probably be difficult to work with, as I believe it has a narrow therapeutic index.
- Scott
Posted by qbsbrown on July 29, 2009, at 12:33:57
In reply to Re: why is kindling not discussed on forums/experts, posted by SLS on July 29, 2009, at 8:23:09
I hope you're right, and it really might help a little bit.
Maybe when/if the evidence comes out, people will start to think differently about using anticonvulsants during wd, from the kindling effect.
Regards,
Brian
Posted by qbsbrown on July 29, 2009, at 15:17:58
In reply to Re: why is kindling not discussed on forums/experts, posted by SLS on July 29, 2009, at 8:23:09
I don't want to jynx you, me, or us, but I think you might be onto something. But everything i write something like this, it turns on me and backfires. So forget that i wrote this.
Well, you know the first dose of tegretol hit me pretty good (was up at 3am in a puddle of sweat), took the second this morning, had deeper sleep than a long time (6am to 730am). I was able to engage with my student more during my online tutoring sessions.
It afforded me to go out of the house (which I couldn't) and walk around a foreign area. Don't wanna tout it, because it then backfires on me.
Sure, utter and total confusion (but less so w/o the anticonvulsant, I couldn't leave the apt w/ fear of not being able to find my way home), loss of touch w/ reality, ruminating/obsessive/intrusive/racing thoughts/inner monologue the whole time. basically out of my mind, i was almost laughing at myself.
This feels much like my cold turkey experience, where i couldn't tell you my name or address, and i'm close to that. I can't but laugh at myself. It's like walking around being the craziest person out there, but no one really knows. Kinda like the sczhizo walking around the streets.
Now with the theory of kindling, what do you think is suggested as a taper rate? Perhaps once and if the anticonvulsant mitigates the kindling, one tapers quicker?
I understand dr ashton and other that if one tapers too quick, or does a rapid detox, that it could lead to psychosis (which feels close), and also a protracted withdrawal, which I fear. I'd like to think that my brain could heal rather quickly, but that might be wishful thinking.
But I don't really see a point for someone who is basically in a state of cold turkey to drag the taper out over a year.
Usually the people who follow her structure are people who start out at a stabilized point, and not in total kindled and total tolerance wd like myself.
My one doc said 6-8 weeks off that it should readjust (after he detoxed me in 1 week, felt great, but i dropped the anticonvulsant too quickly, and severe racing thoughts came on.
The people at the yahoo benzo forum, which is the largest online, say 6-18 months off of all drugs to heal. They for sure would not condone the use of an anticonvulsant.
But no need to put a timetable on recovery rate.
Thanks for your continued help and advice.
Regards,
Brian
Posted by SLS on July 29, 2009, at 16:54:55
In reply to Tapering with kindling Scott?, posted by qbsbrown on July 29, 2009, at 15:17:58
Hi.
In a way, you are in uncharted territory. Hopefully, you will be able to tolerate the Tegretol well enough to be able to continue with it. Dosage of Tegretol? Rate of BZD taper? It will be up to you to evaluate how these things affect you. If it were me, I would go with 400mg of Tegretol and give it a week to settle in before attempting a taper. After you reach the point of complete discontinuation of BZD, I would probably wait a 2-3 weeks before tapering the Tegretol. Then, you might want to allow 2-3 weeks to accomplish the taper.
I'm just guestimating.
Good luck. I have a good feeling about this.
- Scott
Posted by qbsbrown on July 29, 2009, at 17:36:42
In reply to Re: Tapering with kindling Scott?, posted by SLS on July 29, 2009, at 16:54:55
> Hi.
>
> In a way, you are in uncharted territory. Hopefully, you will be able to tolerate the Tegretol well enough to be able to continue with it. Dosage of Tegretol? Rate of BZD taper? It will be up to you to evaluate how these things affect you. If it were me, I would go with 400mg of Tegretol and give it a week to settle in before attempting a taper. After you reach the point of complete discontinuation of BZD, I would probably wait a 2-3 weeks before tapering the Tegretol. Then, you might want to allow 2-3 weeks to accomplish the taper.
>
> I'm just guestimating.
>
> Good luck. I have a good feeling about this.
>
>
> - ScottThank you Scott. God I hope you're feeling is right! I've been begging for any type of break, but didn't think one existed.
For the first time since I began this taper (4 months ago), after my last Tegretol dose (the 3rd 100mg pill i've taken), things went off of absolute hyperseepd, didn't feel on crack, speed, like nails were dug in the seat and holding on all day for dear life. It was amazing, i put the computer down, and could close my eyes, and relax a little bit (or at least in comparison to what my relaxation has been, still some racing thoughts)I was going to start at 300mgs, 100 3 times a day, but now I'm thinking that I could start at 400mgs (which is the normal starting dose) (do you think that 100-100-200 is best, or does it have to be more linear?). I see for immediate release it's 3-4 times a day. It's kinda nice taking it at the same time as my diazepam doses, 6am, 2pm, 10pm.
i don't want to get too greedy too quick for the dose, as just starting it last night was horrible insomnia (and sweats), and my typing abilities are worse today, which indicates raised symptoms, which is expected.
I've read that for benzo wd, that 300-800 is best, so I'm wondering if I could make my way up to perhaps 600mgs (sound nice even dose to me 200-200-200). They even say you can increase dose every 3-7 days as well. But you'd wait a week? Or if I was ready after 3 days, to raise to 600? Or just play it by ear and see if you're ready to raise the dose?
If I get any type of relief, I will be forever indebted to you.
Much regards,
Brian
Posted by qbsbrown on July 29, 2009, at 19:03:59
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 29, 2009, at 17:36:42
I wonder about dosing 4 times a day w/ tegretol, it seems pretty common. From what I read, it says 3-4 times a day.
I have very fast metabolism for meds as well. My comfort after the morning dose, and the 2pm dose, seemed to wear off pretty quick, with in a couple of hours. What do you think about that?
I've been cutting my dose 1mg every 2 weeks (I'm at 16mgs). On tuesday will be 2 weeks, and I'd like to keep on cutting, although my symptoms will probably still be flared up from adding tegretol. What do you think? Being in total tolerance wd, I did not find it of any benefit to hold longer than 2 weeks, and actually made me really physicall ill, sick and weak.
Do you think that i should still cut on my 2 week mark, or hold the tegretol for a week, then go?
What are you finding as far as half life for tegretol?
Regards,
Brian
Posted by SLS on July 30, 2009, at 6:28:46
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 29, 2009, at 19:03:59
Tegretol autoinduces its own metabolism through CYP450 3A4 enzyme, so it might be necessary to continue to increase the dosage. I would still raise it slowly so that your your brain can get used to it. The other thing is that this enzyme actually helps metabolize diazepam. So it is quite possible that Tegretol is reducing your blood levels of BZD. You might feel a worsening of withdrawal because of this. I wouldn't be in such a rush to accomplish your goal. I would not further decrease your dosage of diazepam until the withdrawal symptoms are reduced. You don't want to defeat the purpose of the Tegretol. If a symptom-free taper takes two months, so what?
You can actually develop a tolerance to Tegretol if you allow yourself to become kindled any further. I would wait until you are at your target Tegretol dosage before tapering diazepam any further. Try not to allow withdrawal symptoms to persist by tapering too fast.
http://www.ncbi.nlm.nih.gov/pubmed/1539058
Also, try not to play with dosages. Set your sights on a target and stay there. Most importantly, do not come off of Tegretol until you are sure that you no longer need it. Otherwise, were you to go on and off it, you could develop tolerance. It may be that this repeated exposure is why you no longer find Depakote or Trileptal useful.
- Scott
Posted by qbsbrown on July 30, 2009, at 10:15:00
In reply to Re: Tapering with kindling Scott?, posted by SLS on July 30, 2009, at 6:28:46
I read from a prominent bipolar doc, that if a patient tolerates 400mgs of tegretol well, that he goes to 600 asap.
If I tolerated 400 just fine, although increased some wd effects, can I jump up to 600 as soon as i can if tolerating it fine?
I took 400mgs yesterday, and was thinking about 600 today. Would that be ok? Or is it better to hold longer?
I wonder why Tegretol is used for benzo wd, if it decreases the Diazepam in your system. Kinda strange.
Regards,
Brian
Posted by qbsbrown on July 30, 2009, at 10:25:39
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 30, 2009, at 10:15:00
And do you think that I want my target dose to be the max, 1200 (or go by how I feel, or the 800mg bar that I saw set for BZD WD)? High doses of depakote and trileptal finally reduced my racing thoughts, although making me dumb as a sack of rocks, would have made tapering easy.
Well I don't really want to hold the Diazepam dose too long. No group would advocate holding longer than 4 weeks, but you think give my brain/body time to adjust to the Tegretol, then start the taper?
Regards,
Brian
PS- Thinking that I was going to begin dosing 600mgs today (after reading the doc that said go to 600 if u tolerate 400 fine), which might be too fast, I took 200mgs this morning (I seemed to be getting more and more relief from the Tegretol 100mgs doses, but would wear off quickly). Some WD effects have taken place, the dry mouth, some cognition/concentration problems. But my typing skills/abilities have improved since yesterday.
Should I slow it down and keep it at 400 for a week? Or try the 600 and hold that for a week? Then I can determine to go up to 800 for a week?
Thanks for you help!
Brian
Posted by qbsbrown on July 30, 2009, at 10:32:56
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 30, 2009, at 10:25:39
That said, even w/ some increased wd effects, i think i feel better after the 200mgs this morning.
Hold 600 for a week? Or remain at 400?
Posted by qbsbrown on July 30, 2009, at 10:39:01
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 30, 2009, at 10:32:56
I lied. Cognition and social functioning is much better after a 200mg morning dose.
Geesh, maybe I am bipolar, lol.
Regards,Brian
Posted by SLS on July 30, 2009, at 12:32:07
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 30, 2009, at 10:39:01
You don't really know what you can tolerate by judging your reaction to a particular dosage of a drug after only one day. I think you should stay at 400mg for at least 5 days and go up 200mg every 5 days thereafter if tolerated. That is still more rapid than what the PDR recommends. I can't imagine that you would need more than 800mg.
Dry mouth is side effect of Tegretol, so I don't think you can use that as an index of withdrawal symptomatology.
It is important that you get blood tests to check for agranulocytosis when taking Tegretol. You should work with your doctor to determine a schedule for frequency of testing.
If it were me, there is no way I would try to taper the diazepam until I were taking the Tegretol for at least a week. Give your brain a chance to recover from the insult of withdrawal.
I understand your rush, but I can almost guarantee that rushing will make matters worse, not better. You will not be able to go "cold turkey", so don't even try. If you taper too rapidly, you will end up breaking through the Tegretol and render it useless.
- Scott
Posted by qbsbrown on July 30, 2009, at 12:44:15
In reply to Re: Tapering with kindling Scott?, posted by SLS on July 30, 2009, at 12:32:07
Thanks Scott.
I think it turns out that the XR version is MUCH better. This generic works really well for 2 hours, then drops off big time. I'm really bad w/ peaks and valleys of meds, so I might as well cough over the money for it. Only have to take 2 times daily.
Regards,
Brian
PS- You should do some publishing on kindling. there are far too many people out there suffering from benzo wd, that might be able to benefit greatly from the theory, practice, and anticonvulsants.
Regards,
Brian
Posted by qbsbrown on July 31, 2009, at 0:14:03
In reply to Re: Tapering with kindling Scott?, posted by qbsbrown on July 30, 2009, at 12:44:15
Well either the whole kindling theory is correct, and we're really onto something, that, or that a couple of other docs (2-3) were right w/ the BPII DX, although 2 of the times I was in bad BZD wd/tolerance.
I guess we won't know until the benzos are gone for a while, the i try removing the tegretol.
The Tegretol is helping immensely.
I thank you greatly!
And forget that i wrote this, because when i report something good, it backfires.
Kind regards,
Brian
Posted by qbsbrown on July 31, 2009, at 9:56:06
In reply to You're right Scott, posted by qbsbrown on July 31, 2009, at 0:14:03
Ok, took 600mgs of generic immediate release yesterday. Pretty bad dysphoria today. I get the xr version today. Do you think to hold 400mgs for at least a week before 600? Or maybe 400 is even my ceiling.
But in general, I was much better, and I even feel ready to being tapering. But it looks like I should hold tegretol 1-2 weeks before tapering?
Regards,
Brian
Posted by qbsbrown on July 31, 2009, at 11:13:50
In reply to Re: You're right Scott, posted by qbsbrown on July 31, 2009, at 9:56:06
Oh yeah, too much depression/dysphoria from 600mgs. Looks like 400mgs is the sweet spot.
I found this from a benzo exper in my area.
"Carbamazepine 200-800mg daily (or valproic acid 250
mg tid) + BZP for 1-2 weeks and then taper BZP over
4 weeks; continue anticonvulsant alone for 2-4 weeks"Sound pretty reasonable doesn't it?
Regards,
Brian
Posted by qbsbrown on July 31, 2009, at 15:31:03
In reply to Re: You're right Scott, posted by qbsbrown on July 31, 2009, at 11:13:50
Well I was stupid and greedy thinking that I could go to 600mgs on my second day, and am paying the price dearly. I told you, if i mention positive effects, it turns on me.
I will stay at 400mgs, 200 xr 2 times a day. Hopefully I can settle in nicely.
So you do not think that I should make my 1mg cut every 2 weeks, which is coming up on tuesday?
Regards,
Brian
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