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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by k23d on September 22, 2002, at 4:32:38
Anyone heard anything about this or had any experience?
It's a non-bzd anti-convulsant indicated for epilepsy but I stumbled upon this link while searching:
http://www.smart-publications.com/articles/a104-Dilantin.htmlIt suggests efficacy for anxiety and knowing that some people have had success with other seizure drugs such as neurontin.
Posted by utopizen on September 22, 2002, at 15:17:01
In reply to Dilantin for SP?, posted by k23d on September 22, 2002, at 4:32:38
> Anyone heard anything about this or had any experience?
> It's a non-bzd anti-convulsant indicated for epilepsy but I stumbled upon this link while searching:
> http://www.smart-publications.com/articles/a104-Dilantin.html
>
> It suggests efficacy for anxiety and knowing that some people have had success with other seizure drugs such as neurontin.
Posted by utopizen on September 22, 2002, at 15:25:16
In reply to Larry King Live Transcript, Nixon on Dilantin, posted by utopizen on September 22, 2002, at 15:17:01
Posted by utopizen on September 22, 2002, at 16:18:40
In reply to Book review on Dilantin book, posted by utopizen on September 22, 2002, at 15:25:16
Dilantin is 15 cents a pill...
I'd like to mention that from my very brief googling search, there was one pharmacist who said Jack Dreyfus was irresponsible in advocating the drug for off-label purposes because it has an unpleasant side-effect profile.
This may or not be true. The Dreyfuss Medical Foundation, which if you go to their site will ship you Dreyfus's book for only the cost of shipping, has been around for a few decades now and Jack has personally invested millions in promoting Dilantin.
As a result, he's collected thousands of studies across the world that his foundation claims prove its efficacy in a variety of conditions-- a few dozen, actually.
But please, use your discretion. If you are curious, do some Googline on your own, read his book with a cynical perspective, read the other book on this drug (called "Nerves in Collision," by an M.D).
And when you go to tell your doctor about it, don't expect/demand that he gives you a prescription that day unless he's actually familiar with its off-label use for your indication. Give him a month or so to do research, rather than have the "doctor-shopping mentality." I am constantly amazed at how many people sort of report that they demanded to get on a drug that their doctor never heard of or didn't feel comfortable with and then immediately switched to a different drug.
Your doctor may simply desire to have other drugs tried first. It's really wiser to see if you can actually get the safest, lowest dose drug for your indication, even if it means you risk taking longer to find such a drug. It's really worth the few months or so extra time of trying, since you're making a long investment in finding a drug you may have to take for the rest of your life...
Also, it is wise to give your doctor the contact information for the drug company, or in this case, just the number to the Dreyfus Medical Foundation (or health foundation?).
Unlike a lot of interest group-type medical groups, this one seems legit, relying upon the wisdom of doctors and spending money to research an issue as much as they spend money to advocate for it...
And another thing- I was really weird and mean to some of you on this board a couple of weeks ago. Please appologize, I wasn't myself... I need to take Neurontin in doses that are more spread out or fragmented over time, rather than 1600mg binges... what comes up must come down...
Posted by utopizen on September 22, 2002, at 16:39:25
In reply to Pushing Doctors into prescribing, Dilantin, Cost, posted by utopizen on September 22, 2002, at 16:18:40
Please note that when reading this, "toxicity" is clearly separated from normal dose ranges. I am only posting this because I know many of you are experimental (myself included) to dosing a bit.
Unlike Neurontin, to those who take it, dosing on this drug should be strictly followed within your doctor's instructions. Even within the dosing range, you may experience adverse side effects at any point, as with any drug.
If you do not find any effectiveness with Dilantin, I would suggest not increasing your dose and going off it with your doctor's assistance. There's other drugs out there if this doesn't work, so don't worry about trying to up the dose.
from biopsychiatry:
Dilantin toxicity and vegetative
depression: a report of two cases
by
Garrison SJ, Henson HK.
Baylor College of Medicine,
Department of Physical Medicine,
Methodist Hospital, Houston, TX.
Arch Phys Med Rehabil 1990 May;71(6):422-3
ABSTRACTDilantin toxicity has been well described and has generally been noted to include signs and symptoms of nystagmus, ataxia, nausea, and vomiting. Dilantin's depressive effects are seldom mentioned. Two patients are presented who, although stable while on the rehabilitation unit, developed vegetative signs of depression soon after discharge. Both were found to have toxic levels of Dilantin. Neither revealed the classic neurologic or gastrointestinal complaints. Although one patient had documented family and social stressors, the other had a stable home life. Both patients recovered remarkably once their Dilantin dosages were adjusted. In such patients who present with change in mood, sleeping, and eating patterns, Dilantin toxicity should be suspected. Serum blood levels should be checked, and dosage adjusted before the addition of antidepressant medication. Possible causes for Dilantin-associated depression are discussed in detail.
Posted by joy on September 22, 2002, at 17:26:03
In reply to Dilantin for SP?, posted by k23d on September 22, 2002, at 4:32:38
I have the book [Jack Dreyfus, author] which was interesting. I tried Dilantin, and was disappointed. It did not help me. A couple of years later I was on Paxil which did help me. I was so hoping Dilantin would help me, I had my sister get it in Mexico for me several years ago. I wish I had better news, but I tried it a while, as per the book, with poor results.
Joy
Posted by Phil on September 22, 2002, at 19:34:55
In reply to Re: Dilantin for SP?, posted by joy on September 22, 2002, at 17:26:03
Glad you're off of it, nystagmus is one heckuva side effect. Wonder what percentage of patients get some of the SE listed with this drug.
Posted by utopizen on September 22, 2002, at 21:22:34
In reply to Re: Dilantin for SP?, posted by Phil on September 22, 2002, at 19:34:55
> Glad you're off of it, nystagmus is one heckuva side effect. Wonder what percentage of patients get some of the SE listed with this drug.
>Phil, all adverse reactions are listed here:
www.pfizer.com/hml/pi's/dilsuspensionpi.pdf
As I said earlier, toxicity requires an overdose, by the nature of toxiciology.
This is also affirmed by the FDA insert (URL above).
Unless you plan to overdose your prescription, I wouldn't worry about getting any of the adverse reactions...
Posted by jotho on September 23, 2002, at 11:31:05
In reply to Re: Dilantin for SP?, posted by utopizen on September 22, 2002, at 21:22:34
Hello all...
The "try anything" approach a couple of years back, in attempts to treat depression and anxiety, led me to the Dreyfus book and a brief stint with Dilantin. I took 100mg a day for several days and stopped when a horrid rash enveloped my body. I stopped...it went away.
Thursday night, i had a really bad anxiety situation that caused intense throat closing and chest pressure and lasted that hole night, dissipating only somewhat the next day. I remembered the dilantin and thought if i could take just a 50mg dose one time, maybe that would help. Well, i did and it did. Inside of an hour i felt the racing loop of thoughts disappear, the throat and chest relax. Several hours later i checked my chest and, sure enough, i was covered by silver-dollar to quarter-sized red blotches all over. They didn't itch but it wasn't pretty. They are only somewhat subdued this morning. Anybody know of any other anti-siezure meds. with a lower profile for side-effects? I have heard the amino acid Taurine can help ammeliorate excess firing and potentiation of brain cells. Anybody?...thanks, john
Posted by utopizen on September 23, 2002, at 12:49:10
In reply to Dilantin: measles-like rash, posted by jotho on September 23, 2002, at 11:31:05
The anticonvulsant Neurontin worked well in high, varied dosing for me... my only regret is not taking it consistently (it leaves the body within 5-6 hours) and not timing it early enough (it takes 2-3 hours to peak).
You'd think I would learn by now, after several months of using it... I still haven't. But when I do use it, I am highly socialable and congnitively functioning at at least my usual point... there's a novel-like feel I receive from it that is rather "soothing," and perhaps this tells my nervous system everything's going to be all right while Mother Neurontin is here...
If it doesn't work, keep trying with dosing. It's side effect profile is ridiculiously low for me... I get dry mouth and dry throat, but I get that with any med. I take Salagen, and it cancels out. Of course, talk with your doctor... it's taken by millions for various reasons, but any drug can cause an allergic reaction.
Dilantin is known to cause the skin rash you describe, but it's still not so prevalent enough as to disuade millions from taking it (assuming they don't get a rash).
I'm combining Effexor XR treatment at 150mg. I've been on it for a month, and crossing my fingers for the 6-8 week period.
On Neurontin Dosing: Start with 100mg to ensure you don't get reactions to it. Then gradually titirate your dosing. Do not, as I mistakenly did, take your first trial dose at the time you need to do something important. It's common to loose coordination the first week or so while you are on it, so you may appear drunk to others... Take it at night time if this happens, so your body has a chance to feel use to it. I may take as much as 2000mg at a time, but never go above 2400mg total/day if you have seizures or 3600mg total/day if you don't have seizures. I think I'm starting to find taking 400mg every few hours is more balanced and effective...
Best of luck!
> Hello all...
> The "try anything" approach a couple of years back, in attempts to treat depression and anxiety, led me to the Dreyfus book and a brief stint with Dilantin. I took 100mg a day for several days and stopped when a horrid rash enveloped my body. I stopped...it went away.
> Thursday night, i had a really bad anxiety situation that caused intense throat closing and chest pressure and lasted that hole night, dissipating only somewhat the next day. I remembered the dilantin and thought if i could take just a 50mg dose one time, maybe that would help. Well, i did and it did. Inside of an hour i felt the racing loop of thoughts disappear, the throat and chest relax. Several hours later i checked my chest and, sure enough, i was covered by silver-dollar to quarter-sized red blotches all over. They didn't itch but it wasn't pretty. They are only somewhat subdued this morning. Anybody know of any other anti-siezure meds. with a lower profile for side-effects? I have heard the amino acid Taurine can help ammeliorate excess firing and potentiation of brain cells. Anybody?...thanks, john
Posted by cybercafe on September 24, 2002, at 21:49:17
In reply to Re: Dilantin: measles-like rash, posted by utopizen on September 23, 2002, at 12:49:10
.... i had an anxiety provoking event at 2 pm so i took 1200 mg at 6 am and 1200 mg at 12:30 but i was still quite anxious at 2 pm and had to resort to clonazepam ....... i don't know how gabapentin works... causes the release of GABA? ...
valporate also didn't work for me, anyone know how that works? how about dilantin?i would like to try a GABA transaminase inhibitor (vagabatrin?) or an uptake inhibitor (tiagabine?)
> The anticonvulsant Neurontin worked well in high, varied dosing for me... my only regret is not taking it consistently (it leaves the body within 5-6 hours) and not timing it early enough (it takes 2-3 hours to peak).
>
> You'd think I would learn by now, after several months of using it... I still haven't. But when I do use it, I am highly socialable and congnitively functioning at at least my usual point... there's a novel-like feel I receive from it that is rather "soothing," and perhaps this tells my nervous system everything's going to be all right while Mother Neurontin is here...
>
> If it doesn't work, keep trying with dosing. It's side effect profile is ridiculiously low for me... I get dry mouth and dry throat, but I get that with any med. I take Salagen, and it cancels out. Of course, talk with your doctor... it's taken by millions for various reasons, but any drug can cause an allergic reaction.
>
> Dilantin is known to cause the skin rash you describe, but it's still not so prevalent enough as to disuade millions from taking it (assuming they don't get a rash).
>
> I'm combining Effexor XR treatment at 150mg. I've been on it for a month, and crossing my fingers for the 6-8 week period.
>
> On Neurontin Dosing: Start with 100mg to ensure you don't get reactions to it. Then gradually titirate your dosing. Do not, as I mistakenly did, take your first trial dose at the time you need to do something important. It's common to loose coordination the first week or so while you are on it, so you may appear drunk to others... Take it at night time if this happens, so your body has a chance to feel use to it. I may take as much as 2000mg at a time, but never go above 2400mg total/day if you have seizures or 3600mg total/day if you don't have seizures. I think I'm starting to find taking 400mg every few hours is more balanced and effective...
>
> Best of luck!
>
>
> > Hello all...
> > The "try anything" approach a couple of years back, in attempts to treat depression and anxiety, led me to the Dreyfus book and a brief stint with Dilantin. I took 100mg a day for several days and stopped when a horrid rash enveloped my body. I stopped...it went away.
> > Thursday night, i had a really bad anxiety situation that caused intense throat closing and chest pressure and lasted that hole night, dissipating only somewhat the next day. I remembered the dilantin and thought if i could take just a 50mg dose one time, maybe that would help. Well, i did and it did. Inside of an hour i felt the racing loop of thoughts disappear, the throat and chest relax. Several hours later i checked my chest and, sure enough, i was covered by silver-dollar to quarter-sized red blotches all over. They didn't itch but it wasn't pretty. They are only somewhat subdued this morning. Anybody know of any other anti-siezure meds. with a lower profile for side-effects? I have heard the amino acid Taurine can help ammeliorate excess firing and potentiation of brain cells. Anybody?...thanks, john
>
>
Posted by utopizen on September 24, 2002, at 21:54:09
In reply to Re: Dilantin: measles-like rash, posted by cybercafe on September 24, 2002, at 21:49:17
Cyber,
The mechanism of action of Neurontin, as the insert says, is unknown. It is chemically similar to GABA, but it does not actually bind to GABA.
As far as Dilantin rashes go, it's an allergic reaction that occurs within 3% of those who take it. You start to notice it coming on, so you can stop once that happens. It goes away after the stopping of the drug. There are other side effects- it's not the perfect drug, especially since I don't even see its use in anxiety on Dreyfus's website.
>
> .... i had an anxiety provoking event at 2 pm so i took 1200 mg at 6 am and 1200 mg at 12:30 but i was still quite anxious at 2 pm and had to resort to clonazepam ....... i don't know how gabapentin works... causes the release of GABA? ...
> valporate also didn't work for me, anyone know how that works? how about dilantin?
>
> i would like to try a GABA transaminase inhibitor (vagabatrin?) or an uptake inhibitor (tiagabine?)
>
> > The anticonvulsant Neurontin worked well in high, varied dosing for me... my only regret is not taking it consistently (it leaves the body within 5-6 hours) and not timing it early enough (it takes 2-3 hours to peak).
> >
> > You'd think I would learn by now, after several months of using it... I still haven't. But when I do use it, I am highly socialable and congnitively functioning at at least my usual point... there's a novel-like feel I receive from it that is rather "soothing," and perhaps this tells my nervous system everything's going to be all right while Mother Neurontin is here...
> >
> > If it doesn't work, keep trying with dosing. It's side effect profile is ridiculiously low for me... I get dry mouth and dry throat, but I get that with any med. I take Salagen, and it cancels out. Of course, talk with your doctor... it's taken by millions for various reasons, but any drug can cause an allergic reaction.
> >
> > Dilantin is known to cause the skin rash you describe, but it's still not so prevalent enough as to disuade millions from taking it (assuming they don't get a rash).
> >
> > I'm combining Effexor XR treatment at 150mg. I've been on it for a month, and crossing my fingers for the 6-8 week period.
> >
> > On Neurontin Dosing: Start with 100mg to ensure you don't get reactions to it. Then gradually titirate your dosing. Do not, as I mistakenly did, take your first trial dose at the time you need to do something important. It's common to loose coordination the first week or so while you are on it, so you may appear drunk to others... Take it at night time if this happens, so your body has a chance to feel use to it. I may take as much as 2000mg at a time, but never go above 2400mg total/day if you have seizures or 3600mg total/day if you don't have seizures. I think I'm starting to find taking 400mg every few hours is more balanced and effective...
> >
> > Best of luck!
> >
> >
> > > Hello all...
> > > The "try anything" approach a couple of years back, in attempts to treat depression and anxiety, led me to the Dreyfus book and a brief stint with Dilantin. I took 100mg a day for several days and stopped when a horrid rash enveloped my body. I stopped...it went away.
> > > Thursday night, i had a really bad anxiety situation that caused intense throat closing and chest pressure and lasted that hole night, dissipating only somewhat the next day. I remembered the dilantin and thought if i could take just a 50mg dose one time, maybe that would help. Well, i did and it did. Inside of an hour i felt the racing loop of thoughts disappear, the throat and chest relax. Several hours later i checked my chest and, sure enough, i was covered by silver-dollar to quarter-sized red blotches all over. They didn't itch but it wasn't pretty. They are only somewhat subdued this morning. Anybody know of any other anti-siezure meds. with a lower profile for side-effects? I have heard the amino acid Taurine can help ammeliorate excess firing and potentiation of brain cells. Anybody?...thanks, john
> >
> >
>
>
Posted by cybercafe on September 25, 2002, at 16:12:18
In reply to Re: Dilantin: measles-like rash, posted by utopizen on September 24, 2002, at 21:54:09
> The mechanism of action of Neurontin, as the insert says, is unknown. It is chemically similar to GABA, but it does not actually bind to GABA.
be careful what you read -- often info is outdated. It has been written that gabapentin causes the release of GABA from myelin sheaths within the neocortex and hippocampus (i think?)
i was wondering if there may have been other effects newly discovered (i havn't been keeping up)
> As far as Dilantin rashes go, it's an allergic reaction that occurs within 3% of those who take it. You start to notice it coming on, so you can stop once that happens. It goes away after the stopping of the drug. There are other side effects- it's not the perfect drug, especially since I don't even see its use in anxiety on Dreyfus's website.hmmmmm......... i need more info from people who have taken this stuff ......
gabapentin, verapamil, tiagabine, vigabatrin, dilantin, good for anxiety???
lamotrigine, valporate, little or no effect??
Posted by utopizen on September 26, 2002, at 11:27:28
In reply to Re: Dilantin: measles-like rash, posted by cybercafe on September 25, 2002, at 16:12:18
> be careful what you read -- often info is outdated. It has been written that gabapentin causes the release of GABA from myelin sheaths within the neocortex and hippocampus (i think?)I was aware of the hippocampus theory. it's not proven totally yet, hence why the FDA hasn't forced a revision of the package insert. Package inserts aren't "outdated," they just provide data that's been conclusively proven, and sometimes that takes time. In the meantime, the hippocampus theory could go wrong.
All I know is when I first took it, a tingly sensation occured in the back of my head (where those two points stick out).
Posted by chad_3 on September 27, 2002, at 2:58:44
In reply to Re: Dilantin: measles-like rash, posted by utopizen on September 26, 2002, at 11:27:28
To Dr. Bob:
Dr. Bob - I appreciate your website very much - lots of great things exchanged here and good research data I'm sure - seems to me like a lot of bipolar spectrum people (me too?) - are the ones most frequenting your site if you ask me ...
But Dr. Bob - when you see posts about amisulpride and dilantin (not to suggest the safety profiles are similar) - but I mean - as a prescribing psychiatrist - when you see people talking about such drugs for primary sp treatment - and then talking about neurotransmitters in the same sentence....
... well - do you think that people with severe primary SP are doing a wise thing to take their first step in treating Sp by reading such posts here ?
Chad
http://www.socialfear.com/>
> > be careful what you read -- often info is outdated. It has been written that gabapentin causes the release of GABA from myelin sheaths within the neocortex and hippocampus (i think?)
>
> I was aware of the hippocampus theory. it's not proven totally yet, hence why the FDA hasn't forced a revision of the package insert. Package inserts aren't "outdated," they just provide data that's been conclusively proven, and sometimes that takes time. In the meantime, the hippocampus theory could go wrong.
>
> All I know is when I first took it, a tingly sensation occured in the back of my head (where those two points stick out).
Posted by Mr. SadPuppyDog on September 27, 2002, at 11:25:12
In reply to Dilantin for SP?, posted by k23d on September 22, 2002, at 4:32:38
Dilantin is no good for social phobia. Its too sedating, too many side effects. Most likely it would just make you more depressed over time, worsening SP.
Its arguable that social phobia is better treated with nondrug treatments such as CBT and working out. In fact, working out with heavy weights is probably the single best way to build self confidence and thus overcome natural shyness, which is basically what SP is.
I advise people with social phobia to get to a good gym and learn how to lift heavy free weights. This secretes testosterone which makes you more aggressive and less "shy." It also builds confidence like I said, but takes some time.
Social phobia that does not arise from natural shyness is usually from underlying depression or severe anxiety. Thus treating the underlying depression or anxiety with antidepressants usually gets rid of the social phobia.
Mr. Sad PuppyDog
Posted by utopizen on September 27, 2002, at 19:06:21
In reply to Re: lifting heavy weights is best treatment for SP, posted by Mr. SadPuppyDog on September 27, 2002, at 11:25:12
> Dilantin is no good for social phobia. Its too sedating, too many side effects. Most likely it would just make you more depressed over time, worsening SP.
>Did you take Dilantin? I could not find a clinical study referring to its sedating properties. And it's generally referred to as a non-sedating drug. I'm not quite sure where you got this information, so please let me know.
Moreover, I am very confident in myself. Confidence and "shyness" aren't necessarily connected. And lifting weights never made me feel more confident that I already was. Maybe it's because I don't have a small....
Anyway, there's a lot of assumptions made in your posts.
Posted by chad_3 on September 28, 2002, at 0:46:44
In reply to Re: lifting heavy weights is best treatment for SP, posted by utopizen on September 27, 2002, at 19:06:21
Hey again U:
I don't know anything about your story - but I have this gut level feeling that you are pretty skeptical and negative about things. I am willing to stand corrected...
It sounds like you are resistant to treatment - in the sense that you are *almost* wanting to try it - but afraid. Again - I may be wrong ...
You have criticized a lot - but I don't know anything about your diagnosis and treatment - isn't that what this board is for??
Chad
> > Dilantin is no good for social phobia. Its too sedating, too many side effects. Most likely it would just make you more depressed over time, worsening SP.
> >
>
> Did you take Dilantin? I could not find a clinical study referring to its sedating properties. And it's generally referred to as a non-sedating drug. I'm not quite sure where you got this information, so please let me know.
>
> Moreover, I am very confident in myself. Confidence and "shyness" aren't necessarily connected. And lifting weights never made me feel more confident that I already was. Maybe it's because I don't have a small....
>
> Anyway, there's a lot of assumptions made in your posts.
Posted by jotho on September 28, 2002, at 10:19:49
In reply to Utizopian - I think you like to complain : ), posted by chad_3 on September 28, 2002, at 0:46:44
Sorry, but i have to go with Utopizen on this (though the last comment might have been a bit non-apropos). The writer did seem to have a "one-size-fits-all" attitude in his posting and generalizing sure seems like something to be skeptical about. According to much of what i've read (and my two brief stints with it) Dilantin is not sedating...it is calming because it quites down (normalizes?) overly-potentiated and excessively-firing brain cells. This in turn would generally relieve the user from the exhausting cycle of an overworked brain and precipitate positive energy. Maybe the original letter was just poorly worded, but when i read it it seemed kinda '...just go to the gym, build up some biceps, go look at how badass you look in the mirror, and you will feel powerful and confident...patient cured!' That was the impression it gave to me. As far as tesosterone goes, wouldn't age, nutrition, pre-existing hormonal balances, etc. have something to do with it also?
Posted by chad_3 on September 28, 2002, at 18:35:52
In reply to Re: Utizopian - I think you like to complain : ) » chad_3, posted by jotho on September 28, 2002, at 10:19:49
... BTW, recall a few posters here recently who had SP - finanlly went on (or back onto) nardil - and where are they now? Gone!
After 6 months I am back on treatment and is time for me to put up or shut up ...
Chad
http://www.socialfear.com/> Sorry, but i have to go with Utopizen on this (though the last comment might have been a bit non-apropos). The writer did seem to have a "one-size-fits-all" attitude in his posting and generalizing sure seems like something to be skeptical about. According to much of what i've read (and my two brief stints with it) Dilantin is not sedating...it is calming because it quites down (normalizes?) overly-potentiated and excessively-firing brain cells. This in turn would generally relieve the user from the exhausting cycle of an overworked brain and precipitate positive energy. Maybe the original letter was just poorly worded, but when i read it it seemed kinda '...just go to the gym, build up some biceps, go look at how badass you look in the mirror, and you will feel powerful and confident...patient cured!' That was the impression it gave to me. As far as tesosterone goes, wouldn't age, nutrition, pre-existing hormonal balances, etc. have something to do with it also?
Posted by cybercafe on September 29, 2002, at 9:05:27
In reply to I thought ideas here to help get off and into life, posted by chad_3 on September 28, 2002, at 18:35:52
> ... BTW, recall a few posters here recently who had SP - finanlly went on (or back onto) nardil - and where are they now? Gone!
>
> After 6 months I am back on treatment and is time for me to put up or shut up ...yeah i hear ya Chad .... in 2 days i'm moving downtown and you guys probably won't hear from me for a while i'll be so busy socializing day and night :) :)
This is the end of the thread.
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