Author |
Topic: Antipsychotics (Read 1896 times) |
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
  
 
Gender: 
Posts: 1406
|
 |
Antipsychotics
« on: Dec 6th, 2005, 12:21am » |
 Quote  Modify
|
In the Elderly, Conventional Antipsychotics May Be Associated With Increased Mortality CME
News Author: Laurie Barclay, MD
CME Author: Charles Vega, MD, FAAFP
Dec. 2, 2005 — Conventional antipsychotics are at least as likely as atypical agents to increase the risk for death among elderly persons, and they should not replace atypical agents discontinued in response to the U.S. Food and Drug Administration (FDA) warning, according to the results of a retrospective cohort study reported in the Dec. 1 issue of The New England Journal of Medicine.
"Recently, the FDA issued an advisory stating that atypical antipsychotic medications increase mortality among elderly patients," write Philip S. Wang, MD, DrPH, from the Brigham and Women's Hospital, Harvard Medical School in Boston, Massachusetts, and colleagues. "However, the advisory did not apply to conventional antipsychotic medications; the risk of death with these older agents is not known."
The greatest increases in risk occurred soon after therapy was started and with higher dosages of conventional antipsychotic drugs. Increased risks for conventional vs atypical antipsychotic medications persisted in confirmatory analyses using propensity-score adjustment and instrumental-variable estimation.
"If confirmed, these results suggest that conventional antipsychotic medications are at least as likely as atypical agents to increase the risk of death among elderly persons and that conventional drugs should not be used to replace atypical agents discontinued in response to the FDA warning," the authors write. "To place this magnitude of risk in perspective, only cancer, congestive heart failure, and HIV infection conferred greater adjusted risks in our analyses."
"Traditionally, the benefits and risks of treatments in the elderly have simply been extrapolated from studies involving younger populations. As the recent FDA advisory and the results of this study show, such a practice can be misleading, given the unique needs and susceptibilities of older persons."
The National Institute of Mental Health and the Agency for Healthcare Research and Quality have disclosed that they supported this study.
In an accompanying perspective, Wayne A. Ray, PhD, from the Vanderbilt University School of Medicine in Nashville, Tennessee, notes that the relative efficacy and long-term safety, including effects on mortality, of many widely used medications, are poorly understood. He discusses methodologic limitations of various approaches designed to fill this information gap.
"Randomized trials would provide the most reliable data; however, in the absence of material reform of the system for the approval of new drugs, there is little incentive to conduct such trials," Dr. Ray writes.
N Engl J Med. 2005;353:2335-2341
Atypical antipsychotic medications have received favor because of their lower risks for neurologic adverse effects when compared with older agents, such as chlorpromazine or haloperidol. These second-generation atypical drugs include aripiprazole, clozapine, olanzapine, quetiapine, risperidone, and ziprasidone.
The FDA recently enforced a black box warning describing an increased risk for death associated with the use of atypical antipsychotics in the elderly. The warning also stated that these agents are not approved for older patients with dementia.
Maybe they should be banned then. Thats the big argument against psychedelics. They might fall into the hands of someone with a psychosis. I guess just not appoving mushrooms for people with a psychosis isn't ok unless they were being sold by a major pharmaceutical company.
Haven't noticed any "black box" warnings about death about mushrooms or LSA seeds.
In the current retrospective analysis, the authors compare the risk for death associated with typical vs atypical antipsychotics in older patients.
The risk for death associated with the use of conventional antipsychotics outweighed the risk associated with all other health variables measured, except cancer, congestive heart failure, and HIV infection.
Pearls for Practice
Atypical antipsychotics include aripiprazole, clozapine, olanzapine, quetiapine, risperidone, and ziprasidone.
The current retrospective analysis suggests that the risk for death in older patients is stronger with typical vs atypical antipsychotics. This difference is most pronounced at higher doses of medications and shortly after initiation of therapy.
If you use any of these, and I know some do here..consider getting off of them before you become "elderly" ;-(
|
|
 IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
CHTom
Guest
|
Sometimes with elderly psychotic patients, the only alternative to the use of psychotropic medications would be to have the person strapped to their beds or chairs-although no figures are mentioned, I imagine that the percentage of elderly pyschotic patients who die due to their medications is small. When dealing with elderly patients with any sort of severe illness, the risk of death increase often with the use of medications that would not effect a younger person. Personally, were I such a patient, I would take the risk of a possible fatal reaction to have a reasonably normal life. I fail to see the tie-in with hallucinogenics and unless you have had to deal with psychotic patients, elderly or not, one should be cautious about condemning the use of psychotropics, My 2 cents.
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
 |
Re: Antipsychotics
« Reply #2 on: Dec 6th, 2005, 9:37am » |
Quote Modify
|
Folks should understand that using Zyprexa for a CH attack should not be abandoned because of this report. These side effects, reported here, are found in populations using higher doses every day, often on a continuing basis.
There is no med which does not have side effects. It's critical to understand under what conditions of use these problems MAY emerge. Reports of side effects may range from N=1 and upward.
Keep in mind that aspirin would likely NOT be licensed for sale were it up for approval today. The point being: Even OTC meds, which are assumed to be safe, have important problems associated with them when not used wisely.
|
|
IP Logged |
Bob Johnson
|
|
|
Melissa
Guest
|
Do these elderly people have schizophrenia and schizoaffective disorders?? That's the thing with docs nowdays, they rx shit to people that have nothing to do with what the meds are made for. And it's usually for something that is so far removed from what it's rx'd for, that of course it'll have nasty side effects or death from using it. Idiots.
I'm sorry, but it just pisses me off. That's like my GP rx'ing Wellbutrin to help with weight loss... cripes.  (yes, it actually happened)
In no way am I condemning alternative treatments, I want to make that clear. There is a huge difference between what the patients are rx'd and treatments direct from nature.
If I'm reading the article wrong, please enlighten me.
|
|
IP Logged |
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: Antipsychotics
« Reply #4 on: Dec 6th, 2005, 11:54am » |
Quote Modify
|
on Dec 6th, 2005, 1:10am, CHTom wrote:| I fail to see the tie-in with hallucinogenics and unless you have had to deal with psychotic patients, elderly or not, one should be cautious about condemning the use of psychotropics, My 2 cents. |
|
I was not condemning their use.
I was in part, pointing out the absurd pick and choose method of approving some drugs even when they kill some people, and not approving others.
Take this quote as an example:
""Randomized trials would provide the most reliable data; however, in the absence of material reform of the system for the approval of new drugs, there is little incentive to conduct such trials," Dr. Ray writes. "
I guess they don't want (or require) randomized testing on some drugs, even though they know the mortality rates increase...because there is no incentive? WTF?
No, you can't eat that mushroom, I don't care WHAT it does for you. Now shut up and go give this pill to your grandmother, she's making a scene.
Let's take a look at this quote:
"Recently, the FDA issued an advisory stating that atypical antipsychotic medications increase mortality among elderly patients," write Philip S. Wang, MD, DrPH, from the Brigham and Women's Hospital, Harvard Medical School in Boston, Massachusetts, and colleagues. "However, the advisory did not apply to conventional antipsychotic medications; the risk of death with these older agents is not known."
So, what does this mean? The FDA sends out a warning that some of the newer drugs increase mortality rates. But they do so without knowing if the older ones were better or worse.(older agents unknown)
So, in essence, the FDA says to doctors, hey these newer drugs may be killing your patients. (hint: stick with the older ones??) Even having NO PROOF that the newer ones cause more deaths than the older ones had been. (and there is no incentive to find out which are safer)
How about the number of people killed? Is some hidden monetary value worked into these types of decisions? hmmm.
I posted this report to AGREE with its authors. It says, "hey wait....the FDA has only given you one-half the story and doesn't plan to even find out the other half."
I explained the connection to psychedelics. Yes, all drugs have side effects and doctors and patients should be able to weigh the options. The problem is, we and our doctors are only allowed to weigh the options of those drugs the FDA allows. It appears there are some drugs that they don't even want to test so we CAN weigh the options. (CHTom..just one of the relationships with psychedelics and conventional antipsychotics)
Bob:
I agree. It was more a statement about the pharmaceutical industry, the FDA approval process and the mess it appears to be in.
Hence, yes Melissa, I think you have every right to be pissed off.
BTW, another adverse report has surfaced regarding the Cox-2's. Maybe the FDA will take them off the market again.
Bobw
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: Antipsychotics
« Reply #5 on: Dec 6th, 2005, 11:58am » |
Quote Modify
|
on Dec 6th, 2005, 10:06am, Melissa wrote:I'm sorry, but it just pisses me off. That's like my GP rx'ing Wellbutrin to help with weight loss... cripes. (yes, it actually happened)
|
|
I know several people that had Topamax prescribed for weight loss purposes. Maybe just so they can forget they need to lose some weight? 
Bobw
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender: 
Posts: 7953
|
|
Re: Antipsychotics
« Reply #6 on: Dec 6th, 2005, 12:06pm » |
Quote Modify
|
I just want to add that I've recently seen commercials about a class action suit against Zyprexa. It seems that it's caused Diabetes and even death in some patients. 
Please be careful, Bob and other Zyprexa users...
hugs, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
Melissa
Guest
|
on Dec 6th, 2005, 12:06pm, nani wrote:I just want to add that I've recently seen commercials about a class action suit against Zyprexa. It seems that it's caused Diabetes and even death in some patients.
Please be careful, Bob and other Zyprexa users...
hugs, nani |
|
Oh how lovely. My Cymbalta is a combination of Zyprexa and Zoloft. It's so new that the long term effects probably won't be known for quite some time. I have a feeling I'm sort of a guinea pig, but thank goodneses my doc said I don't have to be on it longer than 6 months. I can even go off earlier if I'm ready. We'll see what happens, maybe I'll die before that. 
Sorry, when I'm in cycle, I'm a little bit of a sarcastic bitch. 
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Antipsychotics
« Reply #8 on: Dec 6th, 2005, 12:27pm » |
Quote Modify
|
Definitely a differerence between using high doses as a prophylactic medication and miniscule doses to abort a CH.
Thanks for the info. I lile to learn all that I can.
BTW I haven't used in quite a while.
Tip toe away so I don't wake it up 
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
BikerBob
New Board Hall of Famer
Gender:
Posts: 680
|
|
Re: Antipsychotics
« Reply #9 on: Dec 6th, 2005, 1:14pm » |
Quote Modify
|
Here's the FDA advisory that the article is referring to...
http://www.fda.gov/cder/drug/advisory/antipsychotics.htm
The article doesn't mention that...
a) It's about the treatment of behavioral disorders in elderly patients with dementia.
b) These studies enrolled a total of 5106 patients, and several analyses have demonstrated an approximately 1.6-1.7 fold increase in mortality in these studies. Examination of the specific causes of these deaths revealed that most were either due to heart related events (e.g., heart failure, sudden death) or infections (mostly pneumonia).
c) The Agency is also considering adding a similar warning to the labeling for older antipsychotic medications because the limited data available suggest a similar increase in mortality for these drugs.
d) The FDA advisory doesn't state the mortality rates. It could be that 1% of the elderly patients with dementia died.
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Antipsychotics
« Reply #10 on: Dec 6th, 2005, 1:42pm » |
Quote Modify
|
Might be helpful to understand that a new med is given clinical trials in a relatively few number of people--a few thousand at best--and for a relatively short time.
After it's licensed for general use, then the actual experience testing begins---years of use, involving a wider range of people, with drug interactions not part of the original clinical tests (for all possible combinations are not possible, in any case), and in people with multiple medical problems (vs. the relatively healthy people used in the clinicals trials). It's very common for many side effects to not begin to be reported/to appear until this large use in the general population begins. Then doc start to send reports to the FDA and, with this evidence, the FDA may issue different guidelines, warnings, or even remove the drug from the market.
My key point: large scale use often reveals problems which the limited clinical trials did not disclose. Secondly, law gives docs the right to use a med for purposes not originally intended by the drug company. These cross over applications are often very helpful, e.g., Zyprexa.
|
|
IP Logged |
Bob Johnson
|
|
|
Not4Hire
CH.com Alumnus
New Board Hall of Famer
...WAS PF since Oct.'02, but ...oh my...(CBusters)
Gender:
Posts: 1190
|
|
Re: Antipsychotics
« Reply #11 on: Dec 6th, 2005, 9:00pm » |
Quote Modify
|
on Dec 6th, 2005, 1:42pm, Bob_Johnson wrote:Might be helpful to understand that a new med is given clinical trials in a relatively few number of people--a few thousand at best--and for a relatively short time.
After it's licensed for general use, then the actual experience testing begins---years of use, involving a wider range of people, with drug interactions not part of the original clinical tests (for all possible combinations are not possible, in any case), and in people with multiple medical problems (vs. the relatively healthy people used in the clinicals trials). It's very common for many side effects to not begin to be reported/to appear until this large use in the general population begins. Then doc start to send reports to the FDA and, with this evidence, the FDA may issue different guidelines, warnings, or even remove the drug from the market.
My key point: large scale use often reveals problems which the limited clinical trials did not disclose. Secondly, law gives docs the right to use a med for purposes not originally intended by the drug company. These cross over applications are often very helpful, e.g., Zyprexa. |
|
hmm.... interesting that a pharmaceutical company can get a drug licensed for use with a *relatively* short testing period--and ...
"then the actual experience testing begins---years of use, involving a wider range of people, with drug interactions not part of the original clinical tests..."
but when a treatment with a pretty wide (and admittedly, anecdotal) report of sucess:
clusterbusters
which is using a substance with politically *dangerous* (expansion of consciousness among other) *side* effects) gets into the GAME...
well... I guess I'm just saying: FOLLOW THE MONEY...
stuff that grows on cowpies and gives relief will never be able to compete with stuff that a well-connected chemical company produces that may or may not kill people....
helifino...but I gotta go with what works...
and if BobW can get enough people to stand up, I gotta feelin' we can whip this MOFO.....
|
| « Last Edit: Dec 6th, 2005, 9:04pm by Not4Hire » |
IP Logged |
Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
|
|
|
JJA
New Board Old Timer
Gender:
Posts: 279
|
|
Re: Antipsychotics
« Reply #12 on: Dec 7th, 2005, 8:59am » |
Quote Modify
|
on Dec 6th, 2005, 9:00pm, Not4Hire wrote:
and if BobW can get enough people to stand up, I gotta feelin' we can whip this MOFO..... |
|
I don't know... Allowing medical use of Cannabis has around 70 - 80% support in polls http://www.norml.org/index.cfm?Group_ID=3392 but the federal government still shows no signs of reform. I think the only hope is more general drug war reform. We shouldn't only be focusing on how clusterheads are victimized by the drug war, but how so many people are victimized...How filling prisons with drug users is a huge waste of resources. Let hippies smoke their pot. Let crackheads smoke their crack. AND LET ME TAKE MY MEDICINE!
Jesse
|
|
IP Logged |
Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
|
|
|
MJ
New Board Hall of Famer
Gender:
Posts: 911
|
|
Re: Antipsychotics
« Reply #13 on: Dec 7th, 2005, 11:41am » |
Quote Modify
|
I am finding that Bob W. is getting people to stand up.
Here is an older article I have seen repeated many times at different site. Bob I hope you dont mind.
http://www.clusterbusters.com/buchanan.htm
Many other articles and communications say the methods may be far easier to get through the approval process than cannabis.
|
|
IP Logged |
MJ
|
|
|
JJA
New Board Old Timer
Gender:
Posts: 279
|
|
Re: Antipsychotics
« Reply #14 on: Dec 7th, 2005, 12:19pm » |
Quote Modify
|
on Dec 7th, 2005, 11:41am, MJ wrote:
I am finding that Bob W. is getting people to stand up. |
|
I agree. In fact, the clusterbusters are largely responsible for sparking my drug law reform activism. I just want to remind us that we're not the only victims of the drug war.
Quote:| Many other articles and communications say the methods may be far easier to get through the approval process than cannabis. |
|
I guess I'm more pessimistic about this than you. In order to be allowed it would need to be moved out of Schedule I status by the DEA. No easy task as they laugh in the face of science. I think our best hope for legal psilocybin use for clusters will come if and when popular support calls for drug law reform (not neccesarily legalization) Still, I'd be interested in seeing these if you have any links.
Jesse
|
|
IP Logged |
Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: Antipsychotics
« Reply #15 on: Dec 8th, 2005, 1:18am » |
Quote Modify
|
on Dec 6th, 2005, 9:37am, Bob_Johnson wrote:| Keep in mind that aspirin would likely NOT be licensed for sale were it up for approval today. The point being: Even OTC meds, which are assumed to be safe, have important problems associated with them when not used wisely. |
|
Right again Bob_J
Acetaminophen May Be a Leading Cause of Acute Liver Failure
Dec. 5, 2005 — In the United States, 42% of acute liver failure (ALF) is caused by acetaminophen, according to the results of a multicenter, prospective cohort study reported in the December issue of Hepatology. Accidental overdose is the leading cause, but suicidal ingestion is also important.
From another source..
A recent article in Public Citizen's "Health Letter" scolded the FDA for not paying attention to this issue. "Acetaminophen is the leading cause of toxic drug ingestions in the U.S.," having causing an average of 56,680 Emergency Department visits, 26,256 hospitalizations, and 458 deaths per year.
Peter Lurie, MD, MPH
Deputy Director, Public Citizen’s Health Research Group
Statement on Safety Issues Related to Acetaminophen
Before the Nonprescription Drugs Advisory Committee
September 19, 2002
In 1977, the Food and Drug Administration’s (FDA’s) Advisory Review Panel recommended the following warnings for acetaminophen-containing products: "Do not exceed recommended dosage because severe liver damage may occur" and "Do not exceed recommended dosage or take for more than 10 days, because severe liver damage may occur." The FDA chose to ignore this wise advice.
)A quarter of a century later we are facing an epidemic of fatal acetaminophen-associated poisonings: a near doubling from 76 in 1995 to 141 in 1999, according to data collected by the American Association of Poison Control Centers through its Toxic Exposure Surveillance System (TESS. TESS data also show 108,102 calls to Poison Control Centers in 1999, while data from the National Hospital Ambulatory Care Survey (NHAMCS) show an average of 56,680 Emergency Department Visits per year. The National Hospital Discharge Survey (NHDS) indicates that there are an average of 26,256 hospitalizations per year related to acetaminophen overdoses. Although the TESS data best indicate the time trend for acetaminophen-related mortality, the best estimate of the average number of deaths per year related to acetaminophen is 458, according to death certificate data. Acetaminophen is the leading cause of toxic drug ingestions in the U.S. By any measure, this is a major national health problem.
MT. ROYAL, N.J., May 5 [2004]/U.S. Newswire/ -- Convened by the American Headache Society (AHS), the Triptan Cardiovascular Safety Expert Panel reviewed the vast clinical experience with triptans, <<<snip for brevity>>> The risk of a serious cardiovascular complication due to taking a triptan is less than one in a million.
Comparatively, the risk of death from taking pain-relieving non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, aspirin and naproxen, is as little as one in 1,200. Prescription NSAIDs contribute to approximately 16,500 deaths a year among people taking them to relieve the pain of arthritis alone, mostly due to gastrointestinal bleeding, according to research.
I know...millions of people use these every day so 16,000 arthritis sufferers aren't many right?
I guess it does get those old folks off the Social Security Disability and Retirement payrolls.
Note to clarify: The 458 deaths/year are the "accidental/suicidal" numbers. The 16,000 refer to the long term use numbers, just for arthritis.
Bobw
Becoming very cynical in my old age.....just hope I don't get arthritis
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: Antipsychotics
« Reply #16 on: Dec 8th, 2005, 2:11am » |
Quote Modify
|
on Dec 7th, 2005, 12:19pm, JJA wrote:
I In order to be allowed it would need to be moved out of Schedule I status by the DEA. No easy task as they laugh in the face of science. |
|
I do appreciate your efforts Jessie and the efforts of others.
You are right about laughing in the face of science. Anyone that read the transcripts of the suit against the DEA about not allowing the private (UofMass) license to just grow medicinal marijuana just for use in research by licensed researchers, that would still need to get the FDA/DEA approval to run such a study.....found it laughable, although disheartening.
Even if you don't believe in medical marijuana or even studying it, just the process should send chills down your spine as to the government doing whatever they want to do.
At least I found out that the DEA most likely has a "file" on me. ;-(
I can probably be found filed between Charlie Watts and Frank Zappa.
Clusterbusters is not and won't be involved any legalization or decriminalization drives. (even if I happen to mouth off once in a while)
Our specific mission is to get the information out to cluster headache sufferers to end as much pain as possible, as soon as possible.
The research we promote is to help find better ways of using this treatment and working on the science to refine the treatment to make it as effective as possible.
The research we push for is to help teach everyone about the safety and efficacy of the treatments and to have this information come from researchers and not just from some annonymous people on the internet. This will hopefully make this information more acceptable to people wanting to try it but would like to hear from someone that, according to society, knows what they are talking about.
Had I read reports in the Lancet or New England Journal of Medicine, rather than from a couple of guys named Flash and Pinksharkmark, it wouldn't have taken me a year to decide to give it a try. I understand the reservations people have about this.
We feel there are many strides we can make in the treatment of cluster headaches (and other neuro-vascular headaches) and maybe some day, what we do can help lay the foundation for a new, safer and more efficacious prescription drug. Who knows, this may take 40 years before there is a psilocybin prescription, but, had anyone started this 40 years ago, where would cluster treatment be now?
You are right, that the law may take many years. The science doesn't have to wait that long. Also, the science is the first thing that is needed to make changes in law.
(or money I guess but I'm broke
Maybe at some point, what we produce in clinical trials and journal articles/studies might some day soon produce some sort of psychedelic that is very efficacious in a modified form (such as they tried with sansert). Maybe this can happen before anyone here has a child or grandchild diagnosed with clusters. If this is going to happen, I can not let Clusterbusters divert any attention from these goals.
Maybe what we do here can help other organizations in the fight for drug reform, some day. If the government allows any of these studies to be entered into evidence.
I have always felt that if we allow ourselves to split our resources (time, money,energy) between studying psychedelics as treatments, and fighting for drug reform, we will not make the strides in pain relief that we might be able to do. With this treatment, "information" is the most important thing in getting more people relief.
To tangle ourselves in drug reform debates, would also only go to serve those that think we are just a bunch of druggies looking for an excuse to get high. Obviously this is not the case but as Jung suggests, preception is often more important than the truth.
Not only do we have cluster headache treatment and pain relief as our priorities, it must also be our perceived mission to those that would stand in our way.
Everytime someone says, "I tried the treatment and not only did it relieve the pain, but I sort of liked the treatment," I can hear the detractors whispering (and sometimes posting) "aha...I knew it....damn druggies."
We are allowed to feel good, just not TOO good ya know.
So,,,,,although I appreciate your stance and agree with it, I will continue to do what needs to be done to make the advancement of cluster headache treatments as our number one priority and let nothing slow that down, if possible. We do have, and will have, more than our share of obstacles.
Bobw
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Antipsychotics
« Reply #17 on: Dec 8th, 2005, 3:27am » |
Quote Modify
|
CONSUMER REPORTS, January, 2006, has a good article on the problems within FDA re. drug regulation, approvals, etc. Having followed their problems over the years, it's clear to me that Congressional and White House manipulation over the years has weakened this critical agency.
|
|
IP Logged |
Bob Johnson
|
|
|
JJA
New Board Old Timer
Gender:
Posts: 279
|
|
Re: Antipsychotics
« Reply #18 on: Dec 8th, 2005, 9:00am » |
Quote Modify
|
Sorry Bob W, I didn't mean to sound critical of clusterbusters. I think the path that clusterbusters has taken as an organization is a smart plan. Promoting the research and remaining nonpolitical adds to its credibility. And, although I think that the government has an amazing ability to ignore science for political reasons, it is still a difficult posture to maintain, especially in the face or popular opposition. I think that research like clusterbusters' is one of the most important factors that may eventually bring about reform. BTW, thank you (and clusterbusters) for all your hard work.
What I'm trying to say is that as individuals, we may need to support more general drug law reform, not just hope for clusterbusters to change the law. I think our best hope for having psilocybin decriminalized will only come when a lot of people grow tired of the costs and problems of the drug war and politicians and bureaucrats realize their jobs are in danger if they don't apply common sense to drug laws.
Jesse
|
|
IP Logged |
Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: Antipsychotics
« Reply #19 on: Dec 8th, 2005, 9:52am » |
Quote Modify
|
on Dec 8th, 2005, 3:27am, Bob_Johnson wrote:| it's clear to me that Congressional and White House manipulation over the years has weakened this critical agency. |
|
I agree Bob. I'm sure there are good people there but...
It is probably pretty disheartening for people that go to work there, expecting to do good things in science for people, working to keep them safe and healthy, and end up finding out so many of their decisions must meet more political tests than scientific.
Jesse,
No need to apologize. I knew you weren't being critical. I just wanted to be able to explain our mission and how it plays out in the bigger picture.
Bobw
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: Antipsychotics
« Reply #20 on: Dec 8th, 2005, 10:12am » |
Quote Modify
|
Ah be fair - Pharmaceutical companies have such a hard time - hoops to jump through, markets to monopolise, shareholders to reward, class actions to defend before they can even think about the patient and meeting their needs.
We're even seeing cancer patients having life saving medication witheld in the UK because the authorities need a whole lot of time to test the meds, which are used in other countries to save lives.
What's so good about this website is the only priority is us - the victims and sufferers of CH. From our perspective we're so much better looking after 'our own' people. Same goes for clusterbusters - can anyone put a value on the pain it's taken out of our lives?
It's simply priceless from my perspective. Worth far more than $200 for 6 tablets. As for care for the elderly it isn't too shocking to hear they're being pumped full of really dangerous meds - after all there won't be many witnesses about when the class action comes round.
I'm 44 and doubt I'll see the industry promoting a 'clean' pharmaceutical CH cure in my lifetime - but it doesn't stop me knowing exactly what to do to to beat CH (so far but it did take a little time and a lot of your help).
|
|
IP Logged |
O2 and clusterbusters - naturally
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: Antipsychotics
« Reply #21 on: Dec 8th, 2005, 10:19am » |
Quote Modify
|
Sorry to go on - just saw this quote from a Dr Karl Buchanan in a piece about BobW and it's perfect.
'The list of drugs and treatments given to cluster headache sufferers reads like a horror script, and includes some of the most potent and debilitating pharmaceuticals currently made, many of which carry numerous undesirable and potentially permanent side effects. While many patients benefit from these drugs many do not, and only partial relief is obtainable in most cases.'
Anyone ever wonder how much money we give to the pharmaceutical industry for looking after us so well?
|
|
IP Logged |
O2 and clusterbusters - naturally
|
|
|
MJ
New Board Hall of Famer
Gender:
Posts: 911
|
|
Re: Antipsychotics
« Reply #22 on: Dec 8th, 2005, 10:39am » |
Quote Modify
|
JJA.
As I delve into the info available on the net, I am like a dry sponge and soak it up and pass it on. I have not saved many links, and most likely you have probably seen the most of them. I commend your efforts in reform.
However.
In the selfish interest of cluster headaches, I agree wholly with Pinkfloyd and the policies he has stated.
To deviate from the potential of psylocibin and LSA as a treatment and enter the wider realm of full drug law reforms (wich I agree are sorely needed) may only be counterproductive to us.
I have no association (only advice recieved) with clusterbusters at this point but I am in full support of them and the policies stated.
MJ
|
| « Last Edit: Dec 8th, 2005, 10:48am by MJ » |
IP Logged |
MJ
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
Gender:
Posts: 3090
|
|
Re: Antipsychotics
« Reply #23 on: Dec 8th, 2005, 1:44pm » |
Quote Modify
|
Thanks Mel for that info and for PinkFloyd for posting this. I am on Cymbalta for an antidepressent and abilify and seroquel for antiphycotics for my schizophrenia. This info totally scares me but there is no way I will ever be able to go off my meds when I am old. If I do the voices and hallucinations will come back. SUCKS!!! 
Looks like I'll probably die young.
PS The meds I have tried several do nothing for my ch either. Just thought I would add that in.
|
| « Last Edit: Dec 8th, 2005, 1:48pm by Karla » |
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Melissa
Guest
|
on Dec 8th, 2005, 1:44pm, Karla wrote:Thanks Mel for that info and for PinkFloyd for posting this. I am on Cymbalta for an antidepressent and abilify and seroquel for antiphycotics for my schizophrenia. This info totally scares me but there is no way I will ever be able to go off my meds when I am old. If I do the voices and hallucinations will come back. SUCKS!!!
Looks like I'll probably die young.
PS The meds I have tried several do nothing for my ch either. Just thought I would add that in. |
|
Karla, how is your head doing BTW? Have your clusters come back after starting Cymbalta or have you noticed any change in frequency or severity while being on it?
BTW, better to have a good quality of life than a long shitty quantity, right?
hope your doing well,
mel
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss