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Dr. Bob is Robert Hsiung, MD,
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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
Posted by SLS on July 31, 2009, at 16:49:43
In reply to Re: You're right Scott, posted by qbsbrown on July 31, 2009, at 15:31:03
> So you do not think that I should make my 1mg cut every 2 weeks, which is coming up on tuesday?
Are you experiencing withdrawal symptoms right now?
- Scott
Posted by qbsbrown on July 31, 2009, at 17:01:15
In reply to Re: You're right Scott, posted by SLS on July 31, 2009, at 16:49:43
The withdrawal became much worse from taking the 600mgs yesterday. After my first 2 200mg pills (morning, 2pm), i felt great. i was looking at jobs, i was talking about going to the gym etc, ready to go for a ride/drive, although i did get a rocking headache.
Then this morning, total dysphoria/depression/feeling drunk, minutes feeling like hours (which is the norm). After my first 2 doses yesterday, the day was almost going by at a normal rate, to where i wasn't even thinking about when i take my valium doses. I'm normally watching the clock like crazy.
So yeah, taking that much sure jacked me and my symptoms up, so i'll for sure have to stay at 400 for a bit.
Would you recommend the XR version over the generic immediate release? You only have to take 2 times a day, as opposed to 3-4 (although dosing at same time as valium was nice), and probably much smoother blood levels.
Thanks for you help.
Posted by SLS on July 31, 2009, at 17:23:18
In reply to do you think the xr version is better?, posted by qbsbrown on July 31, 2009, at 17:01:15
> Would you recommend the XR version over the generic immediate release? You only have to take 2 times a day, as opposed to 3-4 (although dosing at same time as valium was nice), and probably much smoother blood levels.
>
> Thanks for you help.
I haven't read anything about the clinical advantages of using the XR version. I like the idea of keeping blood levels as steady as possible, though.Why don't you stay at 400mg until Tuesday, and not make any decisions until you know how you feel by then.
- Scott
Posted by qbsbrown on July 31, 2009, at 18:11:56
In reply to Re: do you think the xr version is better?, posted by SLS on July 31, 2009, at 17:23:18
Yeah, XR sounds nice, but generic immediate release is dirt cheap, and I like dosing at same time as valium. Gives me some psychosomatic buffer i think lol.
But yeah, after my first 2 doses of 200 yesterday, was really excited felt great. Ready to tackle the world, and thought this might be easier, only to be bit in the *ss by me taking that 3rd dose of 200, totaling 600mgs.
You mean wait til tues to see if im ready to drop valium dose, or to raise to 600mgs?
In your estimation, do you think that i would experience the same dysphoria/depression on 600mgs a week from now, as i did today? Just as i had on 500 of depakote?
That expert did give the range of 200-800 of tegretol to come off. Perhaps I'm in the middle at 400.
Regards,Brian
Posted by qbsbrown on July 31, 2009, at 20:28:25
In reply to Re: do you think the xr version is better?, posted by qbsbrown on July 31, 2009, at 18:11:56
Well I got 50 dollars worth of the xr version, and still have the generic.
Now while i was feeling great on the generic, then why was i frantically calling the doc to call in the xr version? i thought it would make it even easier and smoother
I assume they will both provide the same benefit, perhaps the xr version providing a smoother release and blood levels. The generic was pretty harsh, would feel well for 2 hours, then crash out. But it had a good psychosomatic buffer that i would take it at the same time as my valium doses, 3 times a day.
Being quite agoraphobic right now, being able to take it midday with my midday dose of valium, i felt buffered and not afraid to leave the apartment.If i was only dosing 2 times a day w/ the xr, morning and night, i might be afraid to leave the house during midday. I'm not sure.
Plus i had a great day on the generic, but then why was i trying to change it? Do i listen to that?
Which would you go with?
If generic, should i dose 200-100-100? or 100-100-200? Probably doesn't matter
Regards,
Brian
Posted by qbsbrown on July 31, 2009, at 22:15:49
In reply to It's a tough call, which would you take?, posted by qbsbrown on July 31, 2009, at 20:28:25
fine, i think that i will stick w/ the generic. I'm guessing that my ceiling is 500mgs. I believe that 600mgs of tegretol, is equal to 900 mgs of trileptal, correct me if i'm wrong, and at that dose, it is mimmicing some of the adverse symptoms.
So perhaps 500 is my ceiling. Like i said, i took 200mgs morning and mid day, and was golden. Apparently it was the 3rd 200mg pill that put me over the edge.
Regards,
Bri
Posted by qbsbrown on July 31, 2009, at 22:17:32
In reply to It's a tough call, which would you take?, posted by qbsbrown on July 31, 2009, at 20:28:25
Do you think that i could try 500mgs tomorrow, or is that too much of a gamble? I think it's my ceiling, and i'd go 200-200-100. But probably better to wait at least 3-7 days huh?
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