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Dr. Bob is Robert Hsiung, MD,
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Posted by hildi on January 19, 2003, at 20:50:30
In reply to Re: gabitril neurontin? » hildi, posted by Ame Sans Vie on January 19, 2003, at 13:34:43
Hi Michael. You didn't scare me away from trying meds, just giving more useful information as I see it. I am at this website for honesty and information, and I appreciate you taking the time to relate your experiences to me.
Many people have totally different responses to the same med, so my decision of what to take will not be based solely on one other's personal experience. It's just good to have the information and know some of the reactions, experiences, etc, of others.I am glad you have found a med regimen that works for you. I hope the best for you, and I really appreciate your taking the time to answer my posts. Thanks!
Hildi
Posted by Ritch on January 19, 2003, at 22:19:53
In reply to Re: gabitril neurontin etc » Ritch, posted by hildi on January 19, 2003, at 20:41:22
> Hi Ritch. Thanks for your response. I thought the benzos would be the magic bullet I was looking for, but here I am again!
> Did you try klon and neurontin together? Can they mix?
> I have read posts about being careful with what you take when taking lamictal- but I guess that's really similar to many medications. One med can affect the others. It is hard to tell how things work until you try them, then often cannot tell if something is the med alone, or a synergistic reaction with another med also being taken.
> The Gabitril scares me silly after one of the posts I just read on it- and I thought it was the Lamictal that could be dangerous!
> I tried depakote once-then went into a crying frenzy the next day. It may have been due to not taking my AD, though- I have been 'experimenting' again and cannot remember if that had been a time I was trying other meds w/o AD's. Cannot remember, but it was scary and I am not in a hurry to try depakote again.
> My boyfriend is on dep alone-and it has changed him tremendously for the better. I cannot believe the transformation. So I do believe it is a good med.
> Are you still on depakote and klon? How about neurontin? Also, how much neurontin did you have to take to notice an effect? And finally, how would you compare the effects (for anxiety) of neurontin compared to the benzos, or klon?
> Oh, one last thing- a stimulant for anxiety/depression was mentioned in some posts. What are your thoughts on that? (neurontin and a stimulant, for example) Kind of scares me- but I'm willing to try almost anything at this point.
> Hildi
Hildi, the best (thus far) that I have felt on various combos was Depakote+Neurontin+Klonopin with a small dose of a serotonin reuptake inhibitor. I am almost full circle with experimentation getting back to just that. Depakote, Klon, and Neurontin all mix quite well, IMO. I've never tried Lamictal-but the more I hear about it and the more I understand about the mechanism of action, the more I am inclined to give it a try (pdoc willing of course-and that is not likely at this point), mainly becaue of the effect with glutamine being somewhat similar to lithium (which I have had a good response to previously, but can't take anymore due to medical reasons-thyroid). Depakote and Lamictal is the combo to watch exceptionally carefully and needs close medical supervision, and unfortunately would likely be the most beneficial to me. I would stay away from the stimulants until you get your dx worked out VERY clearly (to ascertain whether they would be beneficial or not), otherwise they *can* make everything go to hell in a hand-basket, if you have occult or hidden problems which they can bring to the surface (a great diagnostic tool in some ways-but you might not want to go there).
Posted by viridis on January 20, 2003, at 1:24:45
In reply to Re: gabitril neurontin etc » Ritch, posted by hildi on January 19, 2003, at 20:41:22
Hi Hildi,
I do well with Klonopin (1 mg/day), Neurontin (1200 mg/day), occasional Xanax, and Adderall -- a stimulant -- 10 mg/day. But I agree with Ritch that you should be careful with stimulants until you're really stabilized and have a clear diagnosis. I didn't have any problem, but I have ADD and find Adderall calming -- others might not. It also has a strong antidepressant effect for me, while SSRIs etc. were terrible.
In terms of anxiety relief, for me Klonopin is definitely much more effective than Neurontin. The Neurontin is just sort of there in the background; I'm not sure if I even need it, but it doesn't cause any problems and may be helping with stability. Klonopin is my "keystone" med and for me, is very effective for anxiety and major depression. Adderall increases my focus and seems to augment the antidepressant effects of Klonopin.
Posted by missliz on January 20, 2003, at 2:19:02
In reply to Re: gabitril neurontin etc » hildi, posted by viridis on January 20, 2003, at 1:24:45
Neurontin is one of the biggest scancals of contemporary psychopharmacology- there was a big trial in Boston, the records were just recently unsealed, the company knew perfectly well it doesn't work but paid off docs to put their names on papers written by the company marketing department and submit them to journals. Neurontin was finally properly tested in double blind placebp cotrolled studies for all the off label uses the company was pushing it hard for (anxiety and BP) and guess what? It either doesn't work or makes people worse. I've noticed that Neurontin is never used alone- it needs the other drugs to do the work. This info comes from the New York Times, by the way.
The real effect of Neurontin is to make obscene amounts of money. 1.2 billion dollars in 2001. If you read the Rx info you'll notice that it doesn't metabolize into anything else, binds to a "novel" receptor (they don't have a clue what this stuff does in your brain) and has only been approved as add on therapy for certain types of epilepsy. It is expensive, and hell to get off of. Psychiatrists have actively spoken out against Neurontin, refusing to use it in their practices. I'll have to dig out the links and post later, but these are reputable enough guys.
I took it, and kept asking my pdoc why? It didn't do anything and I'm better since I got off it. Neurontin is bogus, and a perfect example of how the mentally ill are exploited. Think Big Tobacco when you think Neurontin. Don't waste your time or money. Buying the stuff just eggs those bastards on.
I had a bad reaction to gabitril and lamotrigine, but at least they work for other people.
Trileptal has been really good for me, just titrate the dose up VERY slowly if you try it. Soothes the anxiety a lot, great mood stabilizer, doesn't make you fat. Easy to live with.missliz
Posted by utopizen on January 20, 2003, at 7:34:08
In reply to Re: gabitril neurontin etc, posted by missliz on January 20, 2003, at 2:19:02
you possible misread the New York Times.
They never said the indications didn't work. And controlled studies do prove its efficacy in many off-label uses, contradicting your statements.
The article simply said the company knew the drug wasn't FDA approved for the indications marketed. An FDA approval for an indication is a marketing approval in nature, meaning it simply means the FDA will allow the company to market it for a specific indication. It does NOT mean simply because the FDA didn't approve a drug for a certain indication that the drug is useless for the unapproved indication.
And I do not know of a single doctor who considers Neurontin unsafe. The is actually one of the more tolerated drugs out there, with a very favorable toxicity rating.
Posted by viridis on January 20, 2003, at 15:46:57
In reply to Re: gabitril neurontin etc, posted by missliz on January 20, 2003, at 2:19:02
I'm not sure what to think about Neurontin. It's hard for me to believe that it does nothing, because initially it was extremely relaxing for me (definitely not placebo effect). This wore off very quickly, but I could certainly see it being useful as an anxiolytic for others if this effect lasts.
I started it early on when my pdoc recommended addition of a mood stabilizer, and I refused to take his preferred med (low-dose Depakote). I suggested Neurontin, and he said OK, it's not a "first line" mood stabilizer, but it is extremely safe and (in his experience) is sometimes helpful. He characterized it as the mildest mood stabilizer, and said its effects are generally very subtle.
When things started to come together (mainly, I think, because of the stabilization with benzos and then the addition of Adderall), Neurontin was still there in the background. I've mentioned to my pdoc a couple of times that I might discontinue it, and he doesn't seem too concerned either way. He prefers that I stay with it because it may add "background stability"; I think it's really a case of "if it ain't broke don't fix it" -- i.e., since this combo is working, why mess with it?
I was surprised by your comment that it's "hell to get off of"; I've skipped doses for varying lengths of time and never noticed anything. I've also (accidentally) taken a double dose a couple of times and not noticed anything either. But it sure was great at the beginning, so if that effect is sustained for some people, I could see it being very useful.
A couple of other comments: Neurontin is considered safe in part because it bypasses the liver, so there are almost no concerns with med interactions. It's essentially impossible to overdose, because there's a limit to the amount that can be absorbed in a given length of time; the rest is simply lost in the urine. And, my understanding is that although it's expensive, it will be off-patent soon (it's already generic in Canada, and here generics are apparently being stalled by the manufacturer via lawsuits until the "new and improved" version, Pregabalin, can be marketed).
Posted by lostsailor on January 22, 2003, at 10:56:24
In reply to Neurontin » missliz, posted by viridis on January 20, 2003, at 15:46:57
As for a mood med I agree that neurontin might as well be made of the same ingreg a pez candy. for anxiety, though, I "think" it work for a while but when it was time for a new mood stabilizer I wanted lamictal. Of note was when I asked him about it less then a year ago, he was against it for the possible rash.
Now though, he says he is using it often. He titrated my dose very slowly from 25 mg a day for a week, to 50 for a week to 100 to 150 and finally stopping at 200 for now. I have found this med amazing.
~Tony
Posted by judy1 on January 23, 2003, at 17:38:54
In reply to Re: Neurontin~~hil, posted by lostsailor on January 22, 2003, at 10:56:24
http://www.npr.org/display_pages/features/feature_920362.html
Posted by lostsailor on January 23, 2003, at 18:43:56
In reply to The Neurontin Scandal, posted by judy1 on January 23, 2003, at 17:38:54
well, this is one prob, but....not in deffence of ethics, often meds are use in "off-label" uses that eventually are FDA appoved and of great help to many until final "result" I don't side with the drug comp, I find neurotin a poor med for BPD but I am happy that this practice is used. I think...lol
~Tony
Posted by hildi on January 23, 2003, at 22:42:14
In reply to Re: Neurontin~~hil, posted by lostsailor on January 22, 2003, at 10:56:24
Posted by judy1 on January 24, 2003, at 11:05:28
In reply to Re: The Neurontin Scandal-off-label marketing., posted by lostsailor on January 23, 2003, at 18:43:56
Tony,
I was up to 3g/day of neurontin for bipolar disorder and it had absolutely no effect, and I know I'm not the only one so I find the pharm co.'s tactics disturbing. Re: lamictal, I'm glad you had such great success. I was part of a study (STEP-BD) where it was used with great success, unfortunately I've gotten hypomanic on 2 trials. take care, judy
Posted by Maximus on January 24, 2003, at 12:32:18
In reply to Lamictal amazing?For anxiety,or just mood? (nm) » lostsailor, posted by hildi on January 23, 2003, at 22:42:14
Posted by Alan on January 24, 2003, at 14:28:05
In reply to The Neurontin Scandal, posted by judy1 on January 23, 2003, at 17:38:54
National Public Radio Reportage on Neurontin:
http://www.npr.org/display_pages/features/feature_920362.html
It turns out there are a number of stories on the illegal mis-marketing of Neurontin at this page, both print and audio.
I think it's important to understand the ramifications of the mis-marketing of Neurontin. Many, many millions were spent to get out the news that it works magically for all these unapproved conditions (for which it doesn't work in reality). But who is going to spend comparable amounts to reverse that message now that it has been show to be illegal and usually false?
These stories also give you some insight into how pharmaceutical research works here in the US, where many of the articles published in medical journals are not written by the doctors whose names appear on them. Instead they're written by professional advertising writers and doctors are paid to put their name at the top.
There's no evidence Neurontin is systematically effective against anxiety. Of course there's always SOMEBODY who'll get a beneficial response from anything, including pickled herring. But the makers of Neurontin have faced FDA sanctions here in the United States, plus massive civil lawsuits, because they pushed Neurontin for ALL kinds of conditions for which there is either no evidence it's effective or for which there IS evidence that it's NOT effective.
Maybe one's doctor is unaware of these developments, or maybe he has had one or two of those patients with an exceptional response. Or maybe one's anxiety or panic is biologically related to seizures. There's good evidence for a connection like that, though it still doesn't prove Neurontin would help the anxiety.
I post this because I was on the receiving end of this kind of thing and as aresult, my anxiety went untreated in the mean time...the "side effects" of that untreated anxiety being much worse than the side effects of those medications that were actually theraputic such as, in my case, benzodiazepines.
Posted by viridis on January 25, 2003, at 1:33:26
In reply to Re: The Neurontin Scandal - NPR, posted by Alan on January 24, 2003, at 14:28:05
The Neurontin marketing story is disturbing, and it does sound like the pharmaceutical company was out of line. However, I'll repeat what I said earlier -- Neurontin was a great anxiolytic for me the first few times I took it, so it must do something. Unfortunately, the effect didn't last (benzos have been much more reliable), but given my initial reaction to Neurontin, I could see it being helpful for those in whom the effect does last. And, my psychiatrist seems convinced that it works (subtly) for a minority of patients, although he isn't a big advocate. He does consider it very safe. I'll probably discontinue it soon, but if I could consistently get the results I did the first few times I took it, I'd recommend it more enthusiastically. Maybe Pregabalin (the "improved" version) will work better, if it makes it to market?
Posted by missliz on January 25, 2003, at 13:26:17
In reply to Re: The Neurontin Scandal - NPR, posted by Alan on January 24, 2003, at 14:28:05
A whole lot of you all missed my point SO TOTALLY!
1- there are numerous double blind placebo controlled studies showing that Neurontin doesn't work for the off label studies the company claimed it was so wonderful for. They were done to try to get the stuff aditional FDA approvals. Neurontin either doesn't work, works for a few weeks/ months then quits, or makes people worse. Google it and see for youselves. The search engine is the patients best freind, learn how to use it.
2- Neurontin is a product that happens to be a drug. Do not kid yourselves, the drug co.'s are loyal to the stockholders and see us as cash cows to be exploited. Psych patients are the most easily kicked around group in our society, and a lot of us have federally funded insurance to milk. Our society is full of dangerous automobiles, crummy food, cigarettes, smog, and you're surprised that a bogus psych drug came along to pick your pocket?
3- This isn't about a New York Times article. There was a trial in Boston where all this came out, a whistle blower from whithin the company produced the same kind of incriminating evidence as the stuff that came out at the big tobacco hearings. Don't you people watch the news? Or Google drugs before you eat them?
As long as you are all good little children and tolerate this kind of horrific treatment we will never get better drugs and better lives because a bunch of crooked businessmen will use us as human sacrifices to the bottom line. I think I deserve better, but the mentally ill are the most crapped on group of people in America because most patients won't take responsibility and say no, that isn't acceptable. A lot of us can't, but the people who can write their congressman about things like this can't be bothered. Spare me the self centered whining.
4- One last peice of reality, kiddoes. Drug company reps are the biggest source of your doctors continuing education. A lot of the drugs pushed for psych do work, but there's just too much money to be made for a Neurontin not to happen. Zyprexa was surrounded by apalling scandal in its testing phase too, but I know half of you won't beleive it. Not until you get type II diabetes and a hundred pound wheight gain and all the other grisly fallout from that particular work of the devil. Read the book, "Mad in America" by Robert Whitaker for starters.
I personally spent two years of personal crisis while on Neurontin wondering what the hell had happened to my mind. Then I refused to take it anymore and am returning to myself again. I'm not the only one. And I'm angry about it, I deserve better.missliz
Posted by Alan on January 25, 2003, at 13:36:54
In reply to Re: The Neurontin Scandal , posted by missliz on January 25, 2003, at 13:26:17
> A whole lot of you all missed my point SO TOTALLY!
> 1- there are numerous double blind placebo controlled studies showing that Neurontin doesn't work for the off label studies the company claimed it was so wonderful for. They were done to try to get the stuff aditional FDA approvals.
> 2- the drug co.'s are loyal to the stockholders and see us as cash cows to be exploited.
> 3- This isn't about a New York Times article. There was a trial in Boston where all this came out, a whistle blower from whithin the company produced the same kind of incriminating evidence as the stuff that came out at the big tobacco hearings.
> 4- Drug company reps are the biggest source of your doctors continuing education. A lot of the drugs pushed for psych do work, but there's just too much money to be made for a Neurontin not to happen. > missliz
>
=================================================Seems like my post addressed these very issues and more with the link to the NPR site.
Alan
Posted by Dr. Bob on January 25, 2003, at 18:28:39
In reply to Re: The Neurontin Scandal , posted by missliz on January 25, 2003, at 13:26:17
> A whole lot of you all missed my point SO TOTALLY!
> Don't you people watch the news?
> As long as you are all good little children ... we will never get better drugs... Spare me the self centered whining.I know you're angry, but please don't post anything that could lead others to feel accused or put down, thanks.
Bob
PS: Follow-ups regarding posting policies, and complaints about posts, should be redirected to Psycho-Babble Administration.
Posted by dreamerz on January 26, 2003, at 23:33:22
In reply to Re: The Neurontin Scandal , posted by missliz on January 25, 2003, at 13:26:17
I must be of the minority..works for me .
Posted by Ritch on January 27, 2003, at 9:27:48
In reply to Re: The Neurontin Scandal , posted by dreamerz on January 26, 2003, at 23:33:22
> I must be of the minority..works for me .
Hi, I have noticed over the years that 100mg of Neurontin at bedtime helps me sleep consistently better, and often with just Depakote at bedtime I can still have broken sleep and/or excessive sleepiness in the mornings when I do awake. N. might not have antimanic properties for most bipolars but it works better in the sleep department as an add-on to Depakote than Klonopin does (for me anyhow). In fact the three-way low-dose combo of Depakote+Neurontin+Klonopin hs has worked the best thus far for sleep quality.
Posted by dreamerz on January 27, 2003, at 11:39:56
In reply to Re: The Neurontin Scandal » dreamerz, posted by Ritch on January 27, 2003, at 9:27:48
Hello Mitch_babe
The combo Depakote/Neurontin/Effexor makes me a nicer person around people...although I still prefer isolation. I'm somewhat spaced out slow , sedated but not the tired yawning kind...although I do sleep a lot . Neurontin also fixes my back/neck pains..I'm kind of trying to deal with the fact that I had should of had anti-convulsants/anti-depressants years ago especially at university..Oh well..
Think I'm the first patient to be prescribed Neurontin in my area of London.
Also you are correct about it not stopping hypo/manic episodes..that's why I got the Depakote added.
Posted by dreamerz on January 27, 2003, at 11:54:30
In reply to Re: The Neurontin Scandal » Ritch, posted by dreamerz on January 27, 2003, at 11:39:56
Ever taken a pill on an empty stomache ?
WOW : )
Posted by Ritch on January 27, 2003, at 12:27:16
In reply to Re: The Neurontin Scandal » Ritch, posted by dreamerz on January 27, 2003, at 11:39:56
> Hello Mitch_babe
>
> The combo Depakote/Neurontin/Effexor makes me a nicer person around people...although I still prefer isolation. I'm somewhat spaced out slow , sedated but not the tired yawning kind...although I do sleep a lot . Neurontin also fixes my back/neck pains..I'm kind of trying to deal with the fact that I had should of had anti-convulsants/anti-depressants years ago especially at university..Oh well..
> Think I'm the first patient to be prescribed Neurontin in my area of London.
> Also you are correct about it not stopping hypo/manic episodes..that's why I got the Depakote added.
>
>This is really weird, but back when I was on lithium instead of AED's, and I was first given Effexor I found it super activating. Now, it just seems to grogg me out major (as does Celexa and the other sedative SSRI's). I wish I could tolerate Zoloft or Prozac. I was a lot more "zippy" on those.
mitchiebabe
Posted by Luka62 on January 27, 2003, at 13:41:13
In reply to Re: The Neurontin Scandal , posted by missliz on January 25, 2003, at 13:26:17
My doc kept me on Neurontin much longer than I wanted to be on it. It did nothing to help my mood swings, and I was put on Lamictal 1 1/2 yrs ago, which works well.
I finally made a decision to go off the Neurontin, against my doc's advice, (I now have a new doc, happily.) I've been off of it since last July, and never in 25 years have I been this stable. I'd swear up and down that Neurontin made me Worse!!
When my teen son's doc took him off Neurontin and switched his med, his mood stability also improved dramatically.
Anyone else out there who had worsening symptoms on Neurontin??
Posted by dreamerz on January 27, 2003, at 18:26:32
In reply to Re: The Neurontin Scandal » dreamerz, posted by Ritch on January 27, 2003, at 12:27:16
> This is really weird, but back when I was on lithium instead of AED's, and I was first given Effexor I found it super activating. Now, it just seems to grogg me out major (as does Celexa and the other sedative SSRI's). I wish I could tolerate Zoloft or Prozac. I was a lot more "zippy" on those.Mitch~babes...
Effexor has never activated me , it's a kind of an anti -agressive sedative , all other ssri's activated bigtime and so I drank heavily on them.
For me it's a very thin line between too much energy and non at all..I'm also starting to put weight on so I'm exercising-sort of.
I still get paranoia/panicky and other stuff but when it happens I don't care so much , I ride it--that's the Neurontin helping mostly.
Posted by hildi on January 27, 2003, at 22:51:31
In reply to Re: The Neurontin Scandal » missliz, posted by Luka62 on January 27, 2003, at 13:41:13
> My doc kept me on Neurontin much longer than I wanted to be on it. It did nothing to help my mood swings, and I was put on Lamictal 1 1/2 yrs ago, which works well.
> I finally made a decision to go off the Neurontin, against my doc's advice, (I now have a new doc, happily.) I've been off of it since last July, and never in 25 years have I been this stable. I'd swear up and down that Neurontin made me Worse!!
> When my teen son's doc took him off Neurontin and switched his med, his mood stability also improved dramatically.
> Anyone else out there who had worsening symptoms on Neurontin??Hi. I Cannot answer you on that one, since I'm still trying to figure out whether to try either one of these meds and am trying to obtain as much information as possible, first.
But can you tell me if you are bipolar? Did you ever try other AD's and if so, how did you do on them? And your son, what is his diagosis? Similar to yours?
I don't mean to be nosey, I'm wondering because of the different variables and the different effects/responses so many have had on these meds, and if I want to chance trying either one of these.
Hildi
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