![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 5966 to 5990 of 10407. Go back in thread:
Posted by Lyrical13 on January 1, 2004, at 9:17:32
In reply to Re: Effexor XR - Some Advice Desperately Needed.HELP. » Gummybear, posted by Zellie on December 31, 2003, at 8:24:55
OK..this is a 2-part response to several messages. First re: twitching. My legs usually twitch/jump in the evening..I just can't keep them still and it's very annoying. But it seems to happen regardless of whether I have taken my meds yet. (I take 225mg Effexor, 50mg Seroquel at bedtime and 100mg Synthroid in AM) It usually happens when I'm laying on the couch vegging out and winding down around 10PM or so. But I've had this leg twitching stuff before when I wasn't on my meds. It seemed to happen when my blood sugar was out of whack. So I don't know for sure if it has to do with the meds or not. When it was happening before these meds, it was once in a blue moon. Now it is almost every night. But once I take meds and go to bed, no problems. Anyone have any thoughts about this? It seems to have started since I started Seroquel. I have been on Effexor for a year and just started Seroquel a couple months ago.
Now, re: joey's doc. I hope you are successful in finding a new doc. I just went through a similar experience and changed docs and am SOOOO happy that I did. I had my previous doc kind of by default. I was working with a doc (we'll call him Dr. T.) for a few years and then he moved to the other side of the state. He gave me a list of all the docs in my town..I asked him to narrow it down to the 1 or 2 that he thought I would work well with. Dr. M. was one that he recommended. So I started with Dr. M. in fall of 2001. He was a nice doc when things were going well and he did get me off Serzone (the 'zone' part of that med was accurate for me...) and onto Effexor which has been wonderful for me. But when I was having a crisis he wasn't very responsive. He was very inconsistent in getting back to me. He would talk to me on the phone but sometimes he called back right away..sometimes it was 3 days. That's not good enough when you're in a crisis. I'm sure all of you know that when you're feeling desperate and falling apart an hour can feel like an eternity. His voicemail said go to the ER or call the psych nurse if it's an emergency..well I didn't think it was that much of an emergency that I needed to go to the ER...I live in a small town. everyone knows everyone else's business...I really didn't feel like entering gossip central for the way I was feeling at that time, but I definitely needed assistance. All I needed was for him to tell me how to adjust my meds to feel better. That shouldn't require an ER visit.
Well, I put up with it for the first major crisis in fall of 2002. I couldn't get in to see him for a month and I was falling apart at work. I missed 10 days of work between Sept and Dec. My original doc (Dr. T) would have squeezed me in for an appt within a few days if I was having such a crisis. This doc couldn't even consistently return a phone call. Well, this fall when I started having problems I decided enough was enough. In aug the depression started and I had an appt within a couple weeks so I just went to the appt and we increased the effexor from 75 to 150. It helped for a while but as soon as work started (I work at a school) the anxiety went through the roof. He said to take Attivan (0.5 to 1mg every 6 hrs) which helped some. 3 weeks after upping Effexor dose I was falling apart at work. He said to give it another week. So I did. fAlling apart even worse. Crying jags at work, difficulty being alone at all, starting to having suicidal thoughts...he said "give it another week" again. I was saying I needed to up the dose. Now, I am soemone who is usually very cautious about meds and wants to be on as low a dose as possible. I rarely ask to up the dose. That I was begging to up the dose should have clued him in if he was paying attention. He was very condescening to me on the phone saying that 150 was the dose that worked last year and it should still work and that time of year shouldn't matter (for the past 10 years my worst time has been sept thru jan. 150 was a great dose from jan thru april. after that 75 worked wonderfully...got a little hypomanic around march..but that's another story)
Anyway, I called him back the next day, (after talking to him on the phone on a tues eve and he's being condescending and saying to just give it another week...I'm sobbing uncontrollably and he's saying "wait") Wed I called back and of course he wasn't available so I left a voicemail saying that I had talked to my husband and close friends who had seen how well I did on 150 last year and I wasn't nearly that good right now and i was trying to be pro-active, shouldnt' have to have a total breakdown before I got help and that I felt it was time for a medical intervention..time to increase Effexor. He didnt' call back for 3 DAYS...In fact, I showed up at his office with my husband on Fri afternoon. All of a sudden his tune changed and upping the Effexor was a good idea...but he thought I should enter the day treatment program. At this point I was already trying to set up an appt with another doc. When he saw we weren't going for the day treatment thing (I really didnt' trust him or respect him at this point...why waste my time and miss all that work plus it would bill as a hospitalization....and the whole small town thing again...) All of a sudden he was available for weekly appts. Where the heck were weekly appts last year when I was falling apart and missing so much work?!!!! I agreed to weekly appts and we upped my meds. To make a short story long..... I changed to Dr. Z within a few weeks...just bided my time with weekly appts with Dr. M. until I could get set up with a new doc and make sure I felt comfy with new doc....Best move I ever made in my life. It's hard to make a big change like that when you are in a crisis but if your gut says that you aren't getting the treatment you think is appropriate, your gut is probably right. I should have listened to my gut a year ago.
Dr. Z. explained chronic major depressoin and treatment options to me...augmentation etc. Laid out all my options and pros and cons of various meds and then asked me what I wanted to do. Admittedly, it was info overload but he was cool with me taking a week to think about it. When I came back and told him what i'd like to try, he gently pushed me in a direction that I was a bit wary about (Seroquel...he wanted me to try it short-term because it would boost the Effexor and get me feelign better quickly..plan was that I also start Synthroid..it would take a while to get to a level..once it was up, then stop Seroquel...this plan has since changed...at last appt based on info I gave him he now thinks I'm BP2 and not GAD/depression...funny I brought up same concerns with Dr. M last spring..he labeled it hypomanic but blew it off!....if he had expressed concern like Dr. Z. and responded with approp treatment I could have saved us hundreds of dollars in spending sprees.......
Anyway, when I see Dr Z in a couple weeks we plan to d/c Seroquel and I think Synthroid also and start Lamictal.. Eventually will start backing off slowly from Effexor...his predicted end result med combo is either Lamictal alone or with a low dose of Effexor for depression aspect. (we talked about this at dec appt but I didn't want to mess with my meds over the holidays and be all whacked.
HOpefully Joey can get with a different doc. It doesn't sound like your current doc is very responsive. Shouldn't be blowing you off esp when you're having such scary side effects. BTW I only missed a total of one day of work this fall. (2 half days)Big difference.
Good luck.
L13
Posted by maxx44 on January 1, 2004, at 17:31:33
In reply to twitching and doc contact, posted by Lyrical13 on January 1, 2004, at 9:17:32
well put---'restless-leg' syndrome is well-known.if you search 'medicinal caanabis', which stops it cold, you will find the 1998 harvard abstract expressing strong regret that the legal aspects hinder research on this plant's known therapeutic uses. as for seroquel? barring 'NMS', no AP should be stopped abruptly. if your dr. is 'up-to-date', he'll know you must titrate down. why? abrupt cessation may produce the symptoms a neuroleptic was designed for---the schizophrenias. this appears a greater risk for 'affective disorder clients'---do not expect your dr. to be aware of this. 1st, bad drs. abound. you seem to have found a good one. 2nd, even great drs. are so busy treating clients all day, they simply don't have time to rush home, hit the net, and sacrifice their 'family or personal free-time' for your, and other's interest alone. furthermore, even if they did such, the blizzard of data is deep. as i've posted, a trial of the atypical neuroleptic risperdal clearly produced 'slow' 'atypical neurolepic malignant syndrome' in me. after 3 month's of incontinence, odd high fevers, and becoming so 'rigid', i could not stoop or cycle, i knew these symptoms were trouble. i titrated down on my own, and too quickly, and my bp1 became schizophrenia---for months i awoke to terror no bipolar may imagine. you don't want that. 2 years later 'atypical NMS' was finally recognised in the lit. only 3 months ago my shrink, who also teaches at the U of Virginia, returned from a 'dr. conference' which in great part focused on ANMS---a slower titration may have saved me the experience of 'temp' schizophrenia'---go easy,, good luck
Posted by Lyrical13 on January 1, 2004, at 18:31:21
In reply to Re: twitching and doc contact, posted by maxx44 on January 1, 2004, at 17:31:33
thanks for the info re: titrating down on Seroquel. When my doc and I talked about the med change I asked about how we would d/c the seroquel and he said "just stop it". I will have to talk to him about the atypical NMS. I'd like to find out more about it before my appt and maybe have an article to reference or pass along (he seems like the type of doc who would be OK with this..he gives me info and tells me to check it out for myself...seems like he promotes active patient participation in tx decisions.)
So, to further that end...what does NMS stand for? Thanks
L13
Posted by maxx44 on January 1, 2004, at 19:34:37
In reply to re: atypical NMS, posted by Lyrical13 on January 1, 2004, at 18:31:21
ok---seroquel is an atypical neuroleptic. basically a 'super-benzo'---zyprexa info sheets 1st termed it a 'thio-benzodiazapine'. if you've been on seroquel, even weeks, and if the dose is high enough to show effects, IMHO you'd best taper, as you must with a benzo---or you will see trouble. maybe your dr. knows something very new. or has a plan, such as countering the probable precipitation of even acute psychosis, in many, with a high dose of a non AP benzo for a month. then a short taper off it. but if you just quit and go bonkers and this dr. says, 'see there---you need this med'? walk. this data is all over the net---'supersensitive psychcosis', etc. look.
the usual sudden withdrawal (save NMS crisis)of any major or minor tranqilizer may be lethal. so people will be peeved with that statement of fact. poor, poor scary me! and i don't have time for 'spell-check.'---there's more to this, if you have interest, post back-----
Posted by biogurl on January 1, 2004, at 22:10:42
In reply to Re: Anyone had success on Effexor XR? , posted by Chandelen on December 31, 2003, at 0:38:23
I also take propronalol for anxiety. I am extremely shy and when I am around more than 4 people I start shaking and sweating and my blood pressure increases. My old doc (from when I still had insurance) prescribed it and I only take it when needed. It's also really great for public speaking. I had to do a biology seminar at school (i'm a bio major) and I took propronalol before it and I did great. I was hardly nervous at all when every other public speaking I had ever done had been horrible. I'm so happy he suggested this. He also told me to research it on the net.
Since then I turned 23 and don't have insurance through my dad anymore so I have this free insurance where I can NEVER see the same doc more than once. So I have to go over everything everytime I see a doc. It's ridiculous.
Posted by Johnlund on January 1, 2004, at 22:32:10
In reply to Re: Effexor XR - Some Advice Desperately Needed.HELP., posted by joeyD on December 31, 2003, at 8:09:23
> Hey guys sorry about taking up time here. I hope I'm posting in the right place. I have a few questions. I have just started taking 75 mg of Effexor XR about a week ago for GAD and mild depression. Since I started I have not been able to sleep, however I have been able to function surprisingly well. As of last night I have been having some extreme OCD symptoms!! I could not even think about going to sleep last night so I took 1mg of Klonopin and when I woke up this morning the OCD is still here but even worse! Its driving me crazy! I never had these feelings before and its really bothering me. BTW, they are not dangerous in any way to others or myself. Could the Effexor be causing this? Also, does this med generally cause extreme aggitation? I've been getting angry extremely easilly for a few days now. Sorry to bother you guys about this stuff but my doctor wont talk to me over the phone and my appointing is not until another two weeks. And yes, I am currently looking for a new one.
>
> Thanks in advance!!
>
> Joey
Joey;First, you will probably feel irritable for the first view weeks. That is normal. Then about the third or fourth week you should feel a calm come all of a sudden. At least, that was my experience.
Second, take some klonopin to help you sleep for the first few weeks. The sleeplessness should pass after that.
Third, you will probably experience some sexual disfunction, or lack of sex drive. This is one of the bad side effects of Effexor. I take Viagra. That seems to help.
Fourth, don't give up on the Effexor until you have tried it for 2 months at least. It takes that long to get adjusted to it.Take care;
John
Posted by maxx44 on January 1, 2004, at 22:51:59
In reply to Re: Anyone had success on Effexor XR? , posted by biogurl on January 1, 2004, at 22:10:42
the rediculous killing of minds when not appropriate, rather money-driven', that bothers me. if you may control the drug and use infrequently as intended---3 cheers. inderal? why do you think so many pop music icons have died from heroin? same deal. super-anxiety relief. right? or so they claim. put me to sleep for 26 hours--scripted to lessen lithium/imipramine 'tremor'. i'd still watch it and use only when a known need is overpowering.
it's like being a smoker---you'd best know cigs (a 'street-med as alcohol') or meds may be lethal and have 'cumulative' effects way down the line. if you close the deal, and infrequent inderal helps? great---start using it for every stressor, trouble you don't want to ever see, nor should you. IMHO.
Posted by maxx44 on January 1, 2004, at 23:20:05
In reply to Re: Effexor XR - Some Advice Desperately Needed.HELP., posted by Johnlund on January 1, 2004, at 22:32:10
re: john's well meant response---when you enter the realm of 'dangerous thoughts', as i did only hours after wellbu intake, you are experiencing 'pschycosis'---any reputable dr. should be told immediately and probably That med stopped. there are dozens you have to 'shop' thru. this is but one. 'one man's meat is another man's poison'. i don't feel john has been in your shoes. i have---scared the shit out of me, fear of 'loss-of-control' over my body, and 3 daughters and wife sleeping, at my mercy---sir, do you understand? sometimes you will get a med-reaction that makes you 'the mother in clearlake, texas'---it happens. ideas are not to be ignored. drugs which produce nasty ideations are not for you. or any such. obviously, giving any 'dangerous ideation' drug a continued trial is both irresponsible and potentially catastrophic. report these thoughts to your dr., or hit a good er, if it comes to that. don't end up 'film-at-11'. savvy?
Posted by Lyrical13 on January 2, 2004, at 5:31:48
In reply to re: atypical NMS, posted by maxx44 on January 1, 2004, at 19:34:37
OK Maxx...scary but worth checking out. Personally I think all meds should be titrated off slowly to avoid bad effects. But I still don't know what the initials NMS stand for. I know Seroquel is an atypical antipsychotic and they really don't know what long-term effects it will have because it is much newer than other meds. I'll check out "supersensitive psychosis". NMS=???????
Posted by helenag on January 2, 2004, at 17:03:15
In reply to Re: Effexor XR - Some Advice Desperately Needed.HELP., posted by joeyD on December 31, 2003, at 8:09:23
> Hey guys sorry about taking up time here. I hope I'm posting in the right place. I have a few questions. I have just started taking 75 mg of Effexor XR about a week ago for GAD and mild depression. Since I started I have not been able to sleep, however I have been able to function surprisingly well. As of last night I have been having some extreme OCD symptoms!! I could not even think about going to sleep last night so I took 1mg of Klonopin and when I woke up this morning the OCD is still here but even worse! Its driving me crazy! I never had these feelings before and its really bothering me. BTW, they are not dangerous in any way to others or myself. Could the Effexor be causing this? Also, does this med generally cause extreme aggitation? I've been getting angry extremely easilly for a few days now. Sorry to bother you guys about this stuff but my doctor wont talk to me over the phone and my appointing is not until another two weeks. And yes, I am currently looking for a new one.
>
> Thanks in advance!!
>
> JoeyJoey: Doesn't your pdoc have a nurse in the office that you can talk to??? Usually you can leave a message about meds with the nurse and she will talk to the doctor for you and call you back. Have you tried that?? If you just asked for the doctor without telling the office why, it is usually no wonder you wouldn't get a call back.
I find it very strange that you would receive no help with a med question or problem from a pdoc's office. Very strange. Try calling again and this time tell whomever answers the phone why you are calling (if you didn't before) and that you need someone to call you back asap. If you did do this and no one responded, try again. If you get the same result, it seems like this is quite an unusual office here.....hope you are feeling better soon. helen. and if you have no luck with this doctor, find a new one pdq!!!
Posted by maxx44 on January 2, 2004, at 18:18:18
In reply to re: atypical NMS, posted by Lyrical13 on January 2, 2004, at 5:31:48
search 'neuroleptic malignant syndrome' (NMS), and 'atypical NMS'---when drs. speak of any neuroleptic they use a phrase, 'dopamine and/or dopamine serotonin' BLOCKADE---this is a misnomer as these drugs don't 'block' anything, rather Demolish the deep-brain production facilities and receptors of these key elements of 'self'. that's why those having used benzos or worse, neuroleptics, usually long-term but often even briefly, suffer the fate of always needing the drug. their born 'hardware' has been 'wiped'. scary? please, don't kill the messenger, as many would.
Posted by Mercedes on January 2, 2004, at 21:28:06
In reply to Re: Anyone had success on Effexor XR? , posted by maxx44 on January 1, 2004, at 22:51:59
Geesh! you seem to have a negative response to everything. You respond and contradict others' 'good' or 'helpful' advice/intentions and manage to make everything so negative. This response and many you have posted are totally unacceptable, "killing of minds". Your opinion was not asked for. I know it's a 'free board' but for heaven's sake, don't scare people. We already have enough anxiety without having to hear our med's are "poisons".
If a person makes a comment on what med has worked for them, please don't say things like "death" or "letal". Like I said, we have enough anxiety/depression and don't need to hear sh*t like that. Keep those to yourself. IMHO
*************************************
> the rediculous killing of minds when not appropriate, rather money-driven', that bothers me. if you may control the drug and use infrequently as intended---3 cheers. inderal? why do you think so many pop music icons have died from heroin? same deal. super-anxiety relief. right? or so they claim. put me to sleep for 26 hours--scripted to lessen lithium/imipramine 'tremor'. i'd still watch it and use only when a known need is overpowering.
> it's like being a smoker---you'd best know cigs (a 'street-med as alcohol') or meds may be lethal and have 'cumulative' effects way down the line. if you close the deal, and infrequent inderal helps? great---start using it for every stressor, trouble you don't want to ever see, nor should you. IMHO.
Posted by Zellie on January 2, 2004, at 22:48:02
In reply to Re: Max, stop being so negative! » maxx44, posted by Mercedes on January 2, 2004, at 21:28:06
I, too, would like to see more encouraging talk here. Yes, we all have concerns...we surely can help one another in many ways...but I don't believe that any of us ought to take on the responsibility of trying to warn everyone about every imaginable thing that is either a real, a potential or a presumed hazard. I agree with Mercedes here.
Kindest regards,
Zellie
> Geesh! you seem to have a negative response to everything. You respond and contradict others' 'good' or 'helpful' advice/intentions and manage to make everything so negative. This response and many you have posted are totally unacceptable, "killing of minds". Your opinion was not asked for. I know it's a 'free board' but for heaven's sake, don't scare people. We already have enough anxiety without having to hear our med's are "poisons".
>
> If a person makes a comment on what med has worked for them, please don't say things like "death" or "letal". Like I said, we have enough anxiety/depression and don't need to hear sh*t like that. Keep those to yourself. IMHO
>
> *************************************
>
> > the rediculous killing of minds when not appropriate, rather money-driven', that bothers me. if you may control the drug and use infrequently as intended---3 cheers. inderal? why do you think so many pop music icons have died from heroin? same deal. super-anxiety relief. right? or so they claim. put me to sleep for 26 hours--scripted to lessen lithium/imipramine 'tremor'. i'd still watch it and use only when a known need is overpowering.
> > it's like being a smoker---you'd best know cigs (a 'street-med as alcohol') or meds may be lethal and have 'cumulative' effects way down the line. if you close the deal, and infrequent inderal helps? great---start using it for every stressor, trouble you don't want to ever see, nor should you. IMHO.
>
>
Posted by maxx44 on January 2, 2004, at 22:50:16
In reply to Re: Max, stop being so negative! » maxx44, posted by Mercedes on January 2, 2004, at 21:28:06
let dr. bob decide my printable content---i feel your response inappropriate, or perhaps you just don't read throroughly---either the clearly stated risks on every shrink-med, or my posts'. i only deal with what i know, from myself and very numerous others. this is serious biz---you wish me flippant? not likely. not in your interest. savvy?
Posted by maxx44 on January 2, 2004, at 22:58:31
In reply to Re: Max, stop being so negative! » Mercedes, posted by Zellie on January 2, 2004, at 22:48:02
this is a med-board. i won't pat your back---i will tell you the med-negatives abounding on the net and experienced---in hopes you do not 'find yourself' gone. i've said 'if it works,it works', but i address those showing problems. i consider your response as 'flameing'.
Posted by maxx44 on January 2, 2004, at 23:21:25
In reply to Re: Max, stop being so negative! » maxx44, posted by Mercedes on January 2, 2004, at 21:28:06
as i said---my concern centers on 'do no harm'. meds can and do. as i concentrate on those with negative symptoms should i look like 'George Burns' and be a comedian on a med-board? i have a 26 year-old daughter on zyprexa for 2 years. she has diabetes---you make 'light' of this? i've expressed positives on many things. but the potential of crisis or life-long dependency matter to me more than your opinion---which does matter and is well taken. if nothing's hurting you, fine. if it is, i'm going to report from the net, observed experience of many others, and myself--it is no more negative than advising Grand Canyon campers to carry a flashlight, when walking the edge, at night. savvy?
Posted by Larry Hoover on January 3, 2004, at 10:49:26
In reply to re: atypical NMS, posted by maxx44 on January 2, 2004, at 18:18:18
> search 'neuroleptic malignant syndrome' (NMS), and 'atypical NMS'---when drs. speak of any neuroleptic they use a phrase, 'dopamine and/or dopamine serotonin' BLOCKADE---this is a misnomer as these drugs don't 'block' anything, rather Demolish the deep-brain production facilities and receptors of these key elements of 'self'. that's why those having used benzos or worse, neuroleptics, usually long-term but often even briefly, suffer the fate of always needing the drug. their born 'hardware' has been 'wiped'. scary? please, don't kill the messenger, as many would.
Well, I have no intention in killing the messenger, but I hope you won't mind if I challenge your declarations, and seek further information from you.
Quite contrary to what you declare above, neuroleptic malignant syndrome is generally associated with any drug which binds to the D2 dopamine receptor. There are exceptions, and those cases are considered to be idiosyncratic (due to factors present in the individual).
The total incidence of NMS is estimated to be 2 cases in 1000 (for all antipsychotic meds), and is generally accepted to be substantially less for the newer, so-called atypical antipsychotics, although data have not yet been sufficient for a numerical estimate.
NMS occurs 2/3 of the time within the first week of treatment, and almost without exception, within the first 30 days of treatment. Moreover, with appropriate medical care, the condition is considered to be fully reversible, upon discontinuation of the offending drug. There seems to be a trait susceptibility factor at work, so that those subjects having had one such occurence are substantially more likely to have another.
For more details, see:
http://www.nmsis.org/general_information.shtmlThe immediate occurrence of NMS (upon initiation of drug therapy) argues very much against your proposed "Demolish(ing of) the deep-brain production facilities and receptors of these key elements of 'self'", as does the immediate recovery therefrom. Moreover, neurotransmitters cannot, by any stretch of the language, be construed to be "key elements of 'self'".
Your experience with drugs in this class may well have been horrific, and I deeply sympathize with you. However, you cannot generalize from your experience to the population as a whole. In fact, despite more than forty years of observation and study of NMS, we still do not know what causes it, or why it strikes the individuals that it does.
I do appreciate that informed consent requires, obviously, that one become informed. However, disseminating hyperbole and exaggeration does not qualify. In the context of the experience of the population as a whole, NMS remains a rare occurrence. It is a risk of neuroleptic treatment (and a few other drugs, as well), and if patients read the information kit that should accompany any new prescription, they will be fully apprised of the symptoms of concern, as well as the need to seek emergency treatment should those symptoms occur. After one month has passed, one can reasonably stand down from that guarded stance.
Now, as to having the "hardware wiped".....
The hardware, receptors and neurotransmitters etc.???
I'm not even sure of what you speak of.
The only way that a permanent change can be effected is to have the DNA destroyed, or changed. All cells are constantly interacting with their environment. Everything outside an individual cell is environment to it.
Within a cell, everything is environment to the DNA.
The DNA actively modifies its environment, via mechanisms not yet known to us. Some genes will become more active, while others become less so, due to environmental clues. Unless the cell dies (Parkinson's disease is the death of very specialized dopamine-secreting cells in the substantia nigra, for example), it will respond to external clues in accordance with its own genetic complement.
If there is a sudden external change (drug initiation, or drug withdrawal, for example), there will be a lag time between the way the cell was set up to deal with the environment, until it can find a new comfortable way to deal with the environment. During that period of adaptation, there can be some (very) unpleasant experiences. In so many words, it takes time for the DNA to figure out what's going on external to it, and to adapt the cell to the new parameters.
Now, let's consider the use of benzodiazepines. Let's also assume they're used by someone with a reasonable argument for using them in the first place, e.g. anxiety interfering with their quality of life.
For many such people, long-term benzo use is the norm. But, over time, efficacy can diminish, or medical situations may develop, such that discontinuation of the med is required. (I'll ignore the presently commonplace benzophobia overcoming the medical establishment. That is an issue worthy of an essay, in and of itself.)
A person undergoing such withdrawal is very likely to have profound symptoms, characteristic of the opposite of the effects of the drug itself, so-called rebound phenomena. There may also be other unique effects of withdrawal.
Now, that person will not go back to being "normal" after withdrawal. They were, after all, experiencing quality of life (anxiety) issues in the first place. Moreover, it is entirely possible that their "disease" (I think the word is appropriate, as 'disease' arises from the Old French, diseasu, "not at peace"), can reasonably have progressed (the anxiety likely worsened over time, causing the individual to seek treatment initially, and aging has occurred during treatment), despite medical intervention, via benzos. There is ample reason to expect that such a person will be particularly uncomfortable after withdrawal of the benzo medication. To attribute such an experience to, how did you say it?, 'hardware' (having) been 'wiped', is without foundation, and smacks of fear-mongering.
Please do provide any information that you can about hardware wiping and demolished deep-brain production facilities, as I would very much like to become an informed consumer myself.
Regards,
Lar
Posted by maxx44 on January 3, 2004, at 16:55:24
In reply to re: atypical NMS » maxx44, posted by Larry Hoover on January 3, 2004, at 10:49:26
whew!---'the mark of gentlmen (person)is the ability to 'argue' points with no anger'---thank you for being in that catagory. i'll try and keep my rebuttal sequential to your points, and not assume your stated ignorance of NMS or ANMS as disengenuous.
1--you provide one link referring to the the D2 receptor, others refer to the D5. which is it?
2--the 'known' NMS reaction is 2%, not .2%, and this data comes from the drug cos., hardly a reputable source as the tens-of-millions suffering TD clearly show.
3--i was hit by ANMS, a 'spectral varient'. the keyword being 'spectral'. unlike classic NMS, which often resolves if treated promptly, unless you are among the 20% killed by it, or the even greater % left with 'rigidity (lead-pipe') and permanent altered mental status, ANMS may (in my case did) present at risperdal onset. but as it does not present as 'crisis', rather build with time, it's tricky for many shrinks to notice. i was given a trial for a dx of refractory depression.
4--given the 90 days of risperdal clearly resulted in lower motor-function, muscle-wasting, 'flattening', loss of some higher cognitive functions which persist 3 year's later
'scare-mongering' is IMHO an unjustified conclusion.
5--i repeatedly refer to the 'unique' aspects of each person. hardly overgeneralization.
4--both TD and 'protracted benzo withdrawal syndrome' are known, but not fully understood. but both indicate my point---if the dopamine hardware and receptors are not irreversibly 'wiped', or otherwise rendered inoperable, how is it that TD must be treated with L-dopa, bromocriptine, etc. for life?
5--your data is erudite. it comes, basically, from drug co. funded studies. answer me this. if you wished to partake of the imfamous sail-boat circumnavigation through the deadly 'lower 40's' latitude, would you hire a first mate who read a book or study, or a veteran of that journey?
6--'benzo-phobia' is not simply a 'fad'---rather ethical response, by Law, 'surgical procedure 'knock-out' or short term use are considered the normal use of same with rare exceptions. curiously, i am one, having suffered inoperable damage to my cardiac sphincter--precipitating 'life-threatening' panic. 'life-threatening panic?' my attacks terminate in severe convulsion or intense asthma, followed by being immobile for hours. it's the past indiscriminate scripting of benzos for less-needed use that has produced millions of 'accidental addicts'---these persons i address.
7--DNA? aside from its immune-system factors, to date it may only be shown to control the replication of protien molecules. it instructs a cell to be a liver cell vs. heart, etc.
8--tranqs and ADs are needed, sometimes, to mask symptoms of what now appears 'pathogen infestation' of nervous-systems. how else may you account for the dec. 1 newsweek data? 'when penicillin was introduced for syphilis, thousands of schizophrenics were Cured and released.?'
8--the role of cytoplasm, vs, DNA, is only recently being investigated. who knows?
9--erudition and experience of myself, children, relatives and well over 100 'group' participants obviously takes precedence over erudition alone.
i think that says it all------best wishes
Posted by maxx44 on January 3, 2004, at 18:22:42
In reply to re: atypical NMS » maxx44, posted by Larry Hoover on January 3, 2004, at 10:49:26
ps. i did neglect the key element of client age. young brains are more resilient to assault. but i must express some shock on your statement--'neurotransmitters are not considered part of 'self'. where on earth, or anywhere, did that come from? the entire medical approach to disorders centers on such. furthermore, you address NMS, not ANMS---it took 8 weeks before i realized i could not 'stoop'---my drs. considered my reportage, but at that time there was no body of evidence on ANMS---the immediate onset of incontinence and odd intermittent fever was ignored and 'rigidity' ascribed to the common
result of sleeping 16+ hours/day and weight-gain from risperdal, the only neuroleptic, save lico, long-discontinued, i've ever encountered. in vew of your 'errors of fact' (.2% vs. 2 % for NMS, neuroxmitters not being related to 'self'),i must consider your response either immature or disengenuous. either way, your elegant response is rendered as 'flawed' by content. as for 'scare-mongering'? i expect and deserve an apology. thank you, sir.
Posted by Larry Hoover on January 3, 2004, at 18:37:58
In reply to re: atypical NMS, posted by maxx44 on January 3, 2004, at 16:55:24
> whew!---'the mark of gentlmen (person)is the ability to 'argue' points with no anger'---thank you for being in that catagory. i'll try and keep my rebuttal sequential to your points, and not assume your stated ignorance of NMS or ANMS as disengenuous.
Where did I state I was ignorant about them? I was asking you for evidence.
> 1--you provide one link referring to the the D2 receptor, others refer to the D5. which is it?
I trust the linkage to D2 blockade. I have found no evidence for other dopamine receptor involvement, save one single study showing implicating D3 in combination with D2.
Mov Disord. 1996 Nov;11(6):726-8.
Imaging of dopamine receptors with [123I]iodobenzamide single-photon emission-computed tomography in neuroleptic malignant syndrome.
Jauss M, Krack P, Franz M, Klett R, Bauer R, Gallhofer B, Dorndorf W.
Department of Neurology, University of Giessen, F.R.G.
With the tracer [123I]iodobenzamide ([123I]-IBZM), it is possible to image dopamine receptor occupancy with single-photon emission-computed tomography (SPECT). We report follow-up examinations with IBZM-SPECT in neuroleptic malignant syndrome (NMS) to display D2-receptor availability in the acute phase and during the course of remission. A 27-year-old man was admitted with severe akinesia, rigor, tachycardia, fever, and elevated creatine phosphokinase level (CK) after neuroleptic medication. NMS was diagnosed, and treatment was started with dantrolene, amantadine, and dopamine agonists. IBZM-SPECT examination was performed on days 6, 34, 90, 107, 131, and 201. In the acute state of NMS, there was no binding of IBZM to D2-receptors. SPECT reached almost normal values on day 131, but clinical examination still showed a mild parkinsonian syndrome. With SPECT, the D2-receptor occupancy in NMS could be successfully shown in correlation with extrapyramidal signs. IBZM-SPECT may therefore serve to monitor D2-receptor occupancy in patients at risk for NMS.
> 2--the 'known' NMS reaction is 2%, not .2%, and this data comes from the drug cos., hardly a reputable source as the tens-of-millions suffering TD clearly show.
Are we talking about NMS or TD? They are very different entities.
I based my statistic on the following, which although the data are not presented in the abstract, the relevant stats are 27 cases of NMS out of 17,811 subjects. Caroff has probably published more articles about NMS than any other person, and is head of NMSIS.
Med Clin North Am. 1993 Jan;77(1):185-202.
Neuroleptic malignant syndrome.
Caroff SN, Mann SC.
Department of Psychiatry, University of Pennsylvania, Philadelphia.
Neuroleptic malignant syndrome is a rare but potentially fatal reaction associated with neuroleptic drugs. It occurs in about 0.2% of patients treated with neuroleptics. Risk factors include previous episodes, dehydration, agitation, and the rate and route of neuroleptic administration. Although NMS has been reported in patients with diverse psychiatric diagnoses, as well as in normal subjects, patients with organic brain disorders or mood disorders, particularly when receiving lithium, may be at increased risk. Standardized criteria for the diagnosis of NMS have been developed and emphasize the classic findings of hyperthermia, muscle rigidity, mental status changes, and autonomic dysfunction. The syndrome lasts 7 to 10 days in uncomplicated cases receiving oral neuroleptics. Treatment consists primarily of early recognition, discontinuation of triggering drugs, management of fluid balance, temperature reduction, and monitoring for complications. Use of dopamine agonists or dantrolene or both should be considered and may be indicated in more severe, prolonged, or refractory cases. Electroconvulsive therapy has been used successfully in some cases and is particularly useful in the post-NMS patient. As a result of these measures, mortality from NMS has declined in recent years although fatalities still occur. Neuroleptics may be safely reintroduced in the management of the majority of patients recovered from an NMS episode, although a significant risk of recurrence does exist, dependent in part on time elapsed since recovery and dose or potency of neuroleptics used. Data drawn from clinical observations and basic studies support the primary role of an acute reduction in brain dopamine activity in the development of NMS. Additional studies of facilitating cofactors may lead to innovative risk-reduction strategies and the development of safer neuroleptic drugs.
That isn't drug company data.
How about this study, where the incidence was 0.02% out of nearly 79,000 subjects?
Eur Psychiatry. 2000 Aug;15(5):330-3.
Frequency of neuroleptic malignant syndrome in a large psychiatric hospital in Moscow.Spivak B, Maline DI, Kozyrev VN, Mester R, Neduva SA, Ravilov RS, Weizman A.
Research Unit, Ness Ziona Mental Health Center, POB 1, Ness Ziona 74100, Israel.
A ten-year prospective survey of neuroleptic malignant syndrome (NMS) was performed in a major psychiatric hospital (1,510 beds) in Moscow. All inpatients who developed a persistent and severe extrapyramidal rigidity accompanied by fever after exposure to neuroleptic medication were screened for NMS. The diagnosis of NMS was established according to Levenson's criteria and at a later stage all NMS cases were reevaluated using the DSM-IV research criteria. Data on age, gender and psychiatric diagnoses were analyzed. Of the 78,708 inpatients treated with neuroleptic agents, 19 separate patients had an episode of NMS, for a frequency of 0.02%. Mortality rate was 10.5% (2/19 patients). Of the three potential risk factors studied, only young age (</= 25 years) was significantly associated with an increased frequency of NMS (P < 0. 01). The low rate of NMS found here compared to studies in other countries may be due to the stringent demands for NMS diagnosis. More large-scale prospective studies including detailed clinical and laboratory data are needed to clarify these differences and their impact on the prevalence and risk factors of NMS.
> 3--i was hit by ANMS, a 'spectral varient'. the keyword being 'spectral'. unlike classic NMS, which often resolves if treated promptly, unless you are among the 20% killed by it,
Untreated, fatalities might approach that number.
> or the even greater % left with 'rigidity (lead-pipe') and permanent altered mental status, ANMS may (in my case did) present at risperdal onset.
If it does not present at onset of treatment, it is virtually certain to not be NMS.
> but as it does not present as 'crisis', rather build with time, it's tricky for many shrinks to notice. i was given a trial for a dx of refractory depression.
I am sorry your drug trial was such a trial for you. I would suggest that the more general term EPS might apply to your situation. I am not trivializing your experience.
> 4--given the 90 days of risperdal clearly resulted in lower motor-function, muscle-wasting, 'flattening', loss of some higher cognitive functions which persist 3 year's later
> 'scare-mongering' is IMHO an unjustified conclusion.The existence of individual adverse effects is not generalizable....that is all I ever said. Moreover, the absence of temperature disregulation argues against a diagnosis of NMS.
> 5--i repeatedly refer to the 'unique' aspects of each person. hardly overgeneralization.
No argument there. However, incidence remains a point of contention. I am not a drug company shill. Serzone nearly killed me. However, I recognize the incidence of liver toxicity is low, and I accept that adequate warnings are in place.
> 4--both TD and 'protracted benzo withdrawal syndrome' are known, but not fully understood.
Are we talking about TD now?
> but both indicate my point---if the dopamine hardware and receptors are not irreversibly 'wiped', or otherwise rendered inoperable, how is it that TD must be treated with L-dopa, bromocriptine, etc. for life?
Long-term neurotoxicity is quite another subject. And it is far more complex a phenomenon than is your "wiped".
> 5--your data is erudite. it comes, basically, from drug co. funded studies. answer me this. if you wished to partake of the imfamous sail-boat circumnavigation through the deadly 'lower 40's' latitude, would you hire a first mate who read a book or study, or a veteran of that journey?
Damned by faint praise. I doubt the Moscow data was drug company funded.
> 6--'benzo-phobia' is not simply a 'fad'---rather ethical response, by Law, 'surgical procedure 'knock-out' or short term use are considered the normal use of same with rare exceptions. curiously, i am one, having suffered inoperable damage to my cardiac sphincter--precipitating 'life-threatening' panic. 'life-threatening panic?' my attacks terminate in severe convulsion or intense asthma, followed by being immobile for hours. it's the past indiscriminate scripting of benzos for less-needed use that has produced millions of 'accidental addicts'---these persons i address.
Addiction is quite another matter. I am quite convinced of the potency of benzo withdrawal. I frequently refer people to http://www.benzo.org.uk
> 7--DNA? aside from its immune-system factors,
???
> to date it may only be shown to control the replication of protien molecules.
That is all DNA codes for, proteins. Replication is, strictly speaking, a function of RNA. However, to totally block transcription of DNA, or to cause it to fail entirely (that's really the only mechanism for the destruction you imply), irreversible chemical changes in the DNA must occur.
> it instructs a cell to be a liver cell vs. heart, etc.
Differential expression of DNA determines cell type. I was speaking to feedback regulation of gene expression.
> 8--tranqs and ADs are needed, sometimes, to mask symptoms of what now appears 'pathogen infestation' of nervous-systems. how else may you account for the dec. 1 newsweek data? 'when penicillin was introduced for syphilis, thousands of schizophrenics were Cured and released.?'
I fail to see the relevance of syphilis or penicillin to the discussion at hand, atypical neuroleptic malignant syndrome. In any case, we need not necessarily know the etiology of a symptom to determine an efficacious intervention or treatment. A witch doctor invoking the spirit of an herb in the laying of a spell to treat illness may well be administering a plant-based drug. Does it matter which is correct, if the patient recovers?
> 8--the role of cytoplasm, vs, DNA, is only recently being investigated. who knows?
The cytoplasm is the only environment the DNA will ever have, so long as the cell lives.
> 9--erudition and experience of myself, children, relatives and well over 100 'group' participants obviously takes precedence over erudition alone.
Again, we come to incidence. Self-selection bias could not play a part in your group?
> i think that says it all------best wishes
I still am looking for data or arguments to support your previous declarations.
Regards,
Lar
Posted by maxx44 on January 3, 2004, at 19:36:51
In reply to re: atypical NMS, posted by Larry Hoover on January 3, 2004, at 18:37:58
see xxx or the 1st google page on NMS---rate of NMS =.2-2.2%--u of p is just one bit. there are many. i learned a lot from your post---re: muscle/bone damage, which searching led to atypicals and 'slow NMS'--exactly what got me. yet you have said 'zip' on ANMS. and if 'trials or stats' reveal up to 2.2% mortality in some NMS stats, i feel it reasonable that the actual number is higher. why did you quote the lowest figure possible? i've seen one reference to a teen with risperdal induced NMS and the accompyning statement indicateing a 7% rate of onset for teens. who would script risperdal for what ritalin was 'safely-used-for'? now known as lethal in significant numbers? a dr. the tech aspects of your response deserve a separate post. later--'playoffs, you know. the bucs may be dead, this year, so now i root for the panthers. best wishes
Posted by Larry Hoover on January 3, 2004, at 19:56:56
In reply to re: atypical NMS, posted by maxx44 on January 3, 2004, at 18:22:42
>furthermore, you address NMS, not ANMS---
There is not one single reference to atypical neuroleptic malignant syndrome on Pubmed/Medline. Forgive me for failing to find evidence for something that has not been published under peer review criteria.
I stand by my incidence statistics for NMS.
I am sorry you went through what you did.
Lar
Posted by maxx44 on January 3, 2004, at 20:11:53
In reply to re: atypical NMS » maxx44, posted by Larry Hoover on January 3, 2004, at 19:56:56
appeciation accepted---now keep searching---you have hardly exhausted your resources--you want truth or patronization?
Posted by Larry Hoover on January 3, 2004, at 20:35:28
In reply to re: atypical NMS, posted by maxx44 on January 3, 2004, at 19:36:51
why did you quote the lowest figure possible?
I didn't. I quoted one midspectrum, with a large N size. I tend to ignore outlier stats, or those based on small samples. I am a professional scientist, and I am using my scientific judgment. I originally quoted a median value.
I supplied a reference with a larger N, and a lower incidence, of 0.02%. (19 cases out of 78,708), but that is lower than the more typical figure.
Each reference with higher incidence had much much smaller N, some as few as 7 subjects.
Lar
Here's another with large sample, small incidence.
Can J Clin Pharmacol. 2003 Fall;10(3):111-3.
Neuroleptic malignant syndrome in Mexico.
Montoya A, Ocampo M, Torres-Ruiz A.
Brain Imaging Group, Douglas Hospital Research Centre, McGill University, 6875 Boulevard LaSalle, Verdun, Quebec H4H 1R3, Canada. [email protected]
BACKGROUND: Neuroleptic Malignant Syndrome (NMS) is an uncommon but potentially fatal complication of antipsychotic and neuroleptic drug treatment. OBJECTIVES: This study estimated the frequency, clinical presentation, and outcome of NMS in a referral center for neurological, neurosurgical and psychiatric disorders in Mexico. METHODS: The authors conducted a thorough search of psychiatry, neurology, neurosurgery and intensive care unit records for cases of NMS during the 10-year period between 1990 and 1999. They examined the clinical features, course and treatment of the NMS episodes, and performed a follow-up survey for residual symptoms and clinical outcome. The mean time to follow-up assessment was 36 months. RESULTS: A total of eight of 4831 neuroleptic-treated patients had an episode of NMS (incidence 0.165%). Seven of the eight patients were treated with haloperidol. Other neuroleptics agents associated with NMS were depot pipotiazine palmitate and levomepromazine maleate. One patient received lithium concomitantly. No fatal outcome was found. Only one patient developed persistent clinical sequelae, consisting of extrapyramidal and cerebellar symptoms, three years after the NMS episode. CONCLUSIONS: The slightly low frequency of NMS found in this study compared with studies conducted in other countries may be attributable to the advent and use of newer atypical antipsychotics in Mexico, the rigorous demands for NMS diagnostic criteria and the lack of familiarity with the diagnosis between physicians.
Posted by maxx44 on January 3, 2004, at 20:49:28
In reply to re: atypical NMS » maxx44, posted by Larry Hoover on January 3, 2004, at 19:56:56
2 sources/ vs. hundewds and years tracking them? i have said i am no dr. if you have credentials, please state them. there are tons of ANMS articles and studies for all to see---just hear me out, mate---i've done 4 years of net research. ususally an abstract will do. sometimes you have to learn the jargon and history of a study. i don't know what to say to a post proclaiming validity from 2 web-sites. seems rather superfluous to the obvious conclusions of anyone knowing there are hundreds of related sites to quote. and learn from.
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