![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 13 to 37 of 37. Go back in thread:
Posted by Phillipa on September 4, 2009, at 21:23:17
In reply to Re: Suggestions re: Someone Who Refuses Medications » Phillipa, posted by bleauberry on September 4, 2009, at 15:06:05
BB let's agree to disagree okay? Phillipa
Posted by bleauberry on September 5, 2009, at 7:22:53
In reply to Re: Suggestions re: Someone Who Refuses Medications » bleauberry, posted by Phillipa on September 4, 2009, at 21:23:17
> BB let's agree to disagree okay? Phillipa
Schizophrenics from all walks of life can live healthy functional lives without medicines. It happens by the thousands every single day all across the nation.
For some it means specialized approaches. For some it is targeted nutrtional therapy. For some it is a psychotherapy approach. For some it is undergoing scientific detective work to identify the underlying pathology. For some it means choosing to prefer being a street person rather than a social person. For some it means being saved and walking with Jesus. In all cases, it requires special love and support above and beyond a normal healthy loving relationship. That is basic. Without that, it all crumbles...meds, alternatives, everything.
I submit that this woman deserves a chance at a different journey. The very limited confined journey she has been on has fallen so short. Probably because it has not encomppased the whole person, but rather, only an artificial medicine molecule forced into the brain. That is probably in my estimation only about 10% of the bigger picture, so it is no surprise to me that her treatment has resulted in 90% disappointment.
As this is an opinion board and the disclaimer says not to believe everything you see, we are all free to disagree.
Obivously I am all for meds. Just not when they have led to a bad outcome repeatedly and other alternatives have been scoffed without even consideration.
Posted by 49er on September 5, 2009, at 8:19:48
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by bleauberry on September 5, 2009, at 7:22:53
Bleauberry, thank you so much for what you wrote. I started to respond to this thread several times but just couldn't articulate my opinion very well.
I also feared I would be portrayed as that crazy anti-med zealot and I just didn't want to deal with it. But your post has given me that courage.
Like you, I am not anti-meds even though it may seem like it. For example, I had to admit that for someone I know who has schizophrenia, meds were the right choice initially.
But now, in my opinion, because the side effects are devastating are worse than the cure, they aren't. Another post as I don't want to get sidetracked.
Phillipa, a perfect example of someone who recovered from schizophrenia without meds was John Nash. There is no way in my opinion, he would have been able to accomplish what he did on psychotropic meds.
These are not scientific studies but here is link to several recovery stories from schizophrenia without meds
http://bipolarblast.wordpress.com/recovery-from-extreme-states-psychosis-etc/
Robert Whittaker, who started off his research, believing in the miracle of psych meds (he was not one of those crazy scientologists) provided entensive research in his book, Medication Madness, showing that neuroleptics don't work.
To pick up what Bleauberry said about meds leading to a bad outcome repeatedly, why do people keep insisting on this solution even though over time, it has been shown not to work in particular situations? What is that expression about insanity?
People need to get over their misconceptions that meds are the answer for all mental conditions. They aren't for everyone and to insist otherwise, is very cruel in my opinion. Just like it is cruel to insist that people who benefit from meds stop taking them.
Finally, I want to mention that forcibly committing your wife is a big mistake and will make her fear asking for help. In my state, even people who are definitely pro meds fear mentioning that they are suicidal out of fear they will be forcibily committed due to the toughened state mental health commitment laws.
One more thing - I would encourage your wife to reinstate the last med to the dose that she was last stabilized at and taper it very slowly - 2.5 to 5% of current dose every 3 to 6 weeks.. It is quite clear from the fact that she has been hospitalized from discontinuing these meds that she cold turkeying them or tapering too fast had an adverse effect.
Yes, it will take awhile but tapering slowly will increase her chances of preventing relapses and ending up in the hospital where she will be drugged against her will.
Posted by Phillipa on September 5, 2009, at 20:20:07
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by 49er on September 5, 2009, at 8:19:48
My biggest concern is that hubby says wife becomes suicidal without her meds. Hence My pro meds responses. Phillipa ps just a piece from another website. I feel the husband knows his wife and he will make a great choice. It's hard to do.
won't take meds
Having read Crayola's comments, let me say that we have been dealing with a seriously paranoid schizophrenic son for going on nine years. The side effects are treatable in most cases, and play second fiddle to the delusional thoughts of a truly schizophrenic person who might otherwise be living on the street. If you are so lucky to be able to talk to them and get them to listen, the illness is far from severe as is the case with our son. Rationalizing with an insane person is generally NOT what a psychologist cares to do, but once in a while you can find one that will be helpful in convincing them that they need to talk to a psychiatrist for medication. Having tried virtually all medications, there are some that work well but have serious side effects with long term use. But, I'd still rather have him with a well mind and sick body, if it means he can have some semblance of a life. Abilify didn't begin to touch my son's mental illness. It's a better mood stabilizer, but if you have luck with it, more power too you. A new atypical med that is out is called Invega. My son refuses all medication right now, and I may have to go down to the court house with my guardianship papers yet again, for about the tenth time, and ask for a court order to have him picked up. Once the judge signs it, I take it to the sheriffs office and they then bring him to the hospital where real professionals medicate him, generally on a 200mg shot of Haloperidol, which shuts down the delusional thoughts immediately. It takes him about two days to stop napping all day, but when he wakes up out of it his mind is as clear as a bell, and he is in a great place to make his own future medication decisions, that is until he decides to stop taking them again. He ran away once and I found him in a county shelter in Long Beach. Generally until they get medicated, they believe that the psychologist is part of the system that's pitted against them, and that we're all passing messages back and forth telepathically. It's far better to get them on meds so they can think clearly, at which point only then can a professional really offer any objective help. Forget about the idea of talking to your mom if she's that psychotic. Get a court order and get her into the hospital, where they can treat her
Posted by 49er on September 5, 2009, at 23:41:04
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by Phillipa on September 5, 2009, at 20:20:07
> My biggest concern is that hubby says wife becomes suicidal without her meds. Hence My pro meds responses. Phillipa ps just a piece from another website. I feel the husband knows his wife and he will make a great choice. It's hard to do.
>
Philipa,That is from cold turkeying or tapering off the med too fast. It is a common misconception to confuse withdrawal symptoms with the need to stay on a med forever.
It might be a different story if the person would taper the med very slowly at 2.5 to 5% of current dose every 3 to 6 weeks.
In the links I posted about people with schizophrenia who became med free, they said the meds never stopped the delusions and made their minds feel extremely cognitively dulled. Sure doesn't sound like they clear your mind.
Posted by SLS on September 6, 2009, at 6:04:19
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by bleauberry on September 5, 2009, at 7:22:53
> Schizophrenics from all walks of life can live healthy functional lives without medicines. It happens by the thousands every single day all across the nation.
What happened to "happy"?
How many paranoid schizophrenics do you know personally? How about those with 24/7 auditory hallucinations? I lived among such people for over 8 years, and I know for sure that these wonderful people were more functional and self-described as being happier with drug treatment rather than being allowed to continue separated from the flow of humanity. You know, there is a dangerous period during the recovery process of some individuals with schizophrenia when they are most apt to commit suicide. It is when they first respond to treatment and try to comprehend the years that they lost in the midst of such an unfair, malignant, and warping alteration of consciousness; the magnitude of which is unfathomable for them - just as it is unfathomable to me. They just can't comprehend how they could have lived with such an illness for so long. They can't accept it, and would rather not remain alive to deal with living in a strange new world so unprepared and inexperienced.
Until Abilify came along, I found myself working with a woman almost every day, trying to comfort her by telling her that there were no such things as witches that were going to kill her before she got home. Another woman was convinced that they were feeding her the flesh of infants in the meals that were prepared for her in her boarding home. It was difficult to have her believe otherwise so that she would eat. Another talked loudly and belligerently with her dead mother all day long as she roamed the halls.
I'm afraid I must take issue with your posture on this issue. I think that it is very unfair to people with schizophrenia that anyone judge the quality of their lives - with or without treatment. I try my best to listen to my brothers and sisters who live with schizophrenia. From speaking with many of them, I am left with the impression that most prefer to be treated medically, and join the brotherhood of man rather than to remain involuted and separated from others by the ravages of a devastating brain disorder.
- Scott
>
> For some it means specialized approaches. For some it is targeted nutrtional therapy. For some it is a psychotherapy approach. For some it is undergoing scientific detective work to identify the underlying pathology. For some it means choosing to prefer being a street person rather than a social person. For some it means being saved and walking with Jesus. In all cases, it requires special love and support above and beyond a normal healthy loving relationship. That is basic. Without that, it all crumbles...meds, alternatives, everything.
>
> I submit that this woman deserves a chance at a different journey. The very limited confined journey she has been on has fallen so short. Probably because it has not encomppased the whole person, but rather, only an artificial medicine molecule forced into the brain. That is probably in my estimation only about 10% of the bigger picture, so it is no surprise to me that her treatment has resulted in 90% disappointment.
>
> As this is an opinion board and the disclaimer says not to believe everything you see, we are all free to disagree.
>
> Obivously I am all for meds. Just not when they have led to a bad outcome repeatedly and other alternatives have been scoffed without even consideration.
Posted by 49er on September 6, 2009, at 8:18:42
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by SLS on September 6, 2009, at 6:04:19
Scott,
We need to stop making this an either or situation.
If someone with schizophrenia prefers meds, that choice should be respected.
If they don't want meds, that should be respected also.
Some people with BP and schizophrenia will take meds on an emergency basis but once the crisis has passed will discontinue them. That choice should be respected.
There is the hearing voices network which is a support group for people who want help in dealing with their voices. Here is the link to the Yahoo Groups List:
http://health.groups.yahoo.com/group/voice-hearers/
49er
Posted by SLS on September 6, 2009, at 11:35:47
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by 49er on September 6, 2009, at 8:18:42
> Scott,
>
> We need to stop making this an either or situation.You are entitled to characterize my approach to the this issue any way you like. I don't agree with you that I am somehow trapped in all-or-nothing thinking.
> If someone with schizophrenia prefers meds, that choice should be respected.
> If they don't want meds, that should be respected also.
I never said anything about not respecting the feelings of another human being. It is a difficult line to walk, though, when someone's judgment is affected by an illness of the brain and an alteration of the mind. None of the people I have mentioned is being forced to take medication. That is not to say that it didn't take some coaxing to have them reach a decision that allowed people to treat them.
You just don't ask someone in an altered state a question once and accept the answer you get as an irrevocable decision - at least, not if you really care about their welfare.
People drop in and out of treatment of their own accord. They leave when they feel well enough, often against medical advice. They return after they stop taking their medication and end up homeless.
A very intelligent man who had been in medical school when his schizophrenia hit was not clever enough to adhere to treatment on a daily basis. He came in voluntarily once a month for a Prolixen injection, because he knew during these treatment periods that he could function and maintain an apartment. He would disappear for a few months and wind up in the streets talking nonsense. For the life of me, I don't know what brought him back for treatment periodically. I guess it was a moment of lucidity. Maybe it was the persuasiveness of his case worker. This man's decisions were respected in that no one would force medication down his throat or a needle into his arm.
By the way, these stories come from an adult partial hospitalization program. No one is forced to go. However, if they do not accept treatment, they are often referred to other agencies as they do not benefit from the program.
Do you accept every decision a young child makes? Why not? You can continue to respect the feelings of another while not agreeing with their decisions.
The people on the mailing list you offer are lucid and not terribly ill. I find it irrelevant when dealing with people as seriously ill as are present in the program I attended.
- Scott
Posted by 49er on September 6, 2009, at 11:58:14
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by SLS on September 6, 2009, at 11:35:47
<<I never said anything about not respecting the feelings of another human being. It is a difficult line to walk, though, when someone's judgment is affected by an illness of the brain and an alteration of the mind.>>
Agreed but a real attempt need to be made.
<<You just don't ask someone in an altered state a question once and accept the answer you get as an irrevocable decision - at least, not if you really care about their welfare.>>
Sorry, I didn't mean to give that impression. At the same time, I hope you would allow people who initially made a decision to take meds to later change their mind.
<<People drop in and out of treatment of their own accord. They leave when they feel well enough, often against medical advice. They return after they stop taking their medication and end up homeless.>>
Unfortunately, if they cold turkey or taper these meds too quickly, that is what is going to happen. If doctors would stop taking an all or nothing approach with meds and counsel patient that if they want to go off meds, they should taper very slowly (2.5% to 5% of current dose every 3 to 6 weeks), this might be prevented.
Instead, alot of them have the attitude that patient needs to be on meds for life which creates this all or nothing approach.
<< Do you accept every decision a young child makes? Why not? You can continue to respect the feelings of another while not agreeing with their decisions.>>
Scott, just because you have mental illness, doesn't mean you are a child and lose all rights to make decisions about your welfare.
<<The people on the mailing list you offer are lucid and not terribly ill. I find it irrelevant when dealing with people as seriously ill as are present in the program I attended.>>
>
How do you know that? Have you ever asked those folks to tell their stories? Just because they can participate in a mailing list doesn't mean their symptoms are mild.49er
Posted by bleauberry on September 6, 2009, at 15:40:58
In reply to Suggestions re: Someone Who Refuses Medications, posted by mrm12333601 on September 1, 2009, at 14:22:53
This has been an extraordinarily productive thread. In the course of strongly held personal opinions as well as documented case studies including famous people, a big picture of schizophrenia has been painted in this thread. Within that picture I see the following summaries. These should be very helpful to the thread author. Very respectable job. It would not have been so without the varying viewpoints or case studies.
1. Schizophrenia displays a wide degree of intensity from patient to patient.
2. Schizophrenia displays considerable variation of intensity at varying patient timepoints.
3. An unknown percentage of patients benefit greatly from their meds and prefer them.
4. An unknown percentage of patients do not benefit from their meds, but their surrounding family members see it as the only option due to lack of awareness of other options.
5. An unknown percentage of patients do not benefit from their meds period.
6. Weaning off powerful meds too quickly can cause a new tragedy to occur.
7. Weaning off powerful meds carefully can result in a benign outcome.
8. Happiness and functionality can be achieved without meds by utilizing a number of other strategies.
9. Schizophrenia is a term to describe a cluster of symptoms, but treatment fails to look at basic environmental causes of those symptoms.
10. Every case is different, and in this case we all made many assumptions and opinions based on a complete lack of case details.One final interesting tidbit to add. As the child of a trauma physician, my father to this day still speaks of the significant increase of mental illness traffic into the emergency room when it was a full moon. It was as predictable as a clock. Perhaps treatment could also take that into account, and provide extra care and attention during those times each month.
Posted by Phillipa on September 6, 2009, at 20:44:16
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by SLS on September 6, 2009, at 6:04:19
So true have known and cared for many personally on a day to day basis some were terrified of in his words " Jan the Spirtual warfare is going on in my mind again. What can I do I'm so scared". Grownth man frequently admitted. Coaxing he would reluctantly return to his meds. Two weeks later he was happy and no more spititual warfare. These are real people. Back to beginning of thread and BB's comment choice of meat for the other young boy it was Road Kill meaning a squished animal. He could have been severly hurt from eating fly infested road kill. His Mother had him admitted as she as explained before took her meds had a happy marriage and wanted her Son to have same. Billy the patient name thought their was a horse in the unit and dumped the garbage on the tables. Asked him why (one of my favorite patients ever) said to feed the horse. Said I didn't know we had a horse there where does he sleep. He said in the room across the hall. Now could this person make a decision based on reality? But two weeks later he could. As his meds kicked in. A Few examples of my personal experiences. Scott you've also seen the real world of schizophenia. For that I am thankful right now. Some patients ended up chosing the prolixin injections as they knew they would sell their meds on the street for money hence off them again and the process repeats itself. Some were brought in by police in handcuffs as had tried to harm selves or had and were sent from the ER or ICU. I maintain my position and hope the Husband who obviously to me anyway is very concerned about his wifes welfare from her past suicide attempts that he chose to post the thread on getting help in maintaining his wife on meds. Lucky woman to have such a supportive husband. Kudos to you!!!!! Love to you and your wife Phillipa
Posted by SLS on September 7, 2009, at 9:14:54
In reply to Re: Suggestions re: Someone Who Refuses Medications » SLS, posted by 49er on September 6, 2009, at 11:58:14
> <<I never said anything about not respecting the feelings of another human being. It is a difficult line to walk, though, when someone's judgment is affected by an illness of the brain and an alteration of the mind.>>
>
> Agreed but a real attempt need to be made.I'm confused. A real attempt to do what?
> <<You just don't ask someone in an altered state a question once and accept the answer you get as an irrevocable decision - at least, not if you really care about their welfare.>>
> Sorry, I didn't mean to give that impression. At the same time, I hope you would allow people who initially made a decision to take meds to later change their mind.If I were a healthcare worker managing the case of a person with schizophrenia whom did poorly without medication, I would try to pursuade them that they do indeed need to be treated, especially if they are too low functioning to feed themselves while living as an indigent out on the streets. Perhaps you can suggest here how you would treat someone who is always found roaming the streets dirty, dishevelled, and hungry, talking to themselves while wearing a foil hat whenever they discontinue taking medication. Is this the type of schizophrenia you speak of?
> <<People drop in and out of treatment of their own accord. They leave when they feel well enough, often against medical advice. They return after they stop taking their medication and end up homeless.>>
>
> Unfortunately, if they cold turkey or taper these meds too quickly, that is what is going to happen.Are you telling me that it is the rate of taper that determines whether someone eventually relapses or not?
> If doctors would stop taking an all or nothing approach with meds and counsel patient that if they want to go off meds, they should taper very slowly (2.5% to 5% of current dose every 3 to 6 weeks), this might be prevented.
And you have ascertained this "fact" how?
I get it. Doctors need money, so they make sure that a patient have no chance to be well without medication so that they can insure themselves of a repeat business. In fact, such a thing can only be done if it is considered the standard protocol by "the establishment", otherwise, they might lose their licenses. Therefore, it is the establishment that hides from people that the best hope for a low functioning schizophrenic person to get well is really nutritional.
> Instead, alot of them have the attitude that patient needs to be on meds for life which creates this all or nothing approach.
What alternatives are there, in your estimation, to treat the woman who won't eat because they are cooking her meals at her boarding home using the flesh of infants.
> << Do you accept every decision a young child makes? Why not? You can continue to respect the feelings of another while not agreeing with their decisions.>>
> Scott, just because you have mental illness, doesn't mean you are a child and lose all rights to make decisions about your welfare.
I guess you missed the point. Many people with schizophrenia are less capable than a child at making the decisions for themselves that will keep them clean and fed. It's not pretty, I know, but it is no less true.
> <<The people on the mailing list you offer are lucid and not terribly ill. I find it irrelevant when dealing with people as seriously ill as are present in the program I attended.>>
> How do you know that?Oops, I apologize. I was just reading the preamble mission statement on the webpage and thought that it was representative of their membership. That writing in no way resembles a word salad (schizophasia). The author seems to be high functioning, de facto, or he would not write so comprehensively and organize a website. The site is dedicated to those who hear voices, not to schizophrenia per se.
I really don't know how you have arrived at your belief system regarding schizophrenia and its treatment and mistreatment. I find your taper hypothesis very disturbing - stated as if it were a fact that someone suffering from schizophrenia could become free of medication if they would only discontinue their drugs using your taper schedule.
- Scott
Posted by 49er on September 7, 2009, at 10:19:42
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by SLS on September 7, 2009, at 9:14:54
Scott,
I wanted to try a different approach in our discussion.
Do you feel anyone with schizophrenia can recover without meds? If you don't, then it really is pointless for us to be having this discussion.
Sorry, I should have asked that alot earlier so I am not putting the blame on you.
I did want to discuss the medication issue. Not to do a "you too" but I have found your advice for tapering medication disturbing also. So the feeling is mutual.
Medical professionals I have spoken to on the Internet have said psych meds need to be tapered at a very slow rate. Come on Scott, you know that due to them making neurochemical changes throughout the body, you can't just stop taking the med as doing so, is like putting the car in reverse at 60 miles per hour. This isn't like stopping Tylenol.
I didn't say that tapering slowly off of meds means the person won't relapse in the future. But since withdrawal symptoms produce many rebound symptoms that are quite similar to the original illness, it is common sense that you would taper more slowly and lessen the chance of a relapse.
Why is tapering slowly such a hard concept for you to understand? You seem like a very bright person so I don't understand why you're resisting this concept.
I know it is hard to change entrenched beliefs but this is important. Even if one doesn't want to go off medication, I have seen so many posts on this board of people suffering needlessly transitioning between meds because the taper is too quick. I don't even bother responding because I feel what I say falls on deaf ears.
You won't see studies of this because many medical professionals have the same entrenched beliefs. Not because their intentions are bad or because they are drug whores. It is because of the attitude that we have done it this way for a million years and we're not changing..
If you think I am crazy, when I discussed tapering my psych meds slowly with my psychiatrist, his response was, "it just isn't done that way". Nothing about what I was doing was unsafe.
A compound pharmacist also tried to tell me I was tapering too slowly. Again, I asked him if what I was doing was unsafe and the answer was no. It was because I was bucking medical establishment routines.
My psychiatrist too his credit has cooperated so I don't want to leave you with a total negative impression.
Anyway, back on topic - I will be interested in your response about whether you feel anyone can recover from schizophrenia without meds.
49er
Posted by Alexanderfromdenmark on September 7, 2009, at 10:37:21
In reply to Suggestions re: Someone Who Refuses Medications, posted by mrm12333601 on September 1, 2009, at 14:22:53
I know hypothyroidism can cause Scizophrenia. Hypothryoidism is ridiously undiagnosed. Maybe your wife needs something other the psychiatric meds.
Posted by Phillipa on September 7, 2009, at 20:27:37
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by Alexanderfromdenmark on September 7, 2009, at 10:37:21
Hi Alexander great thought but usually a thyroid panel is included in an initial work up of the client. I'd like to hear back from Husband on wife's status? Phillipa
Posted by SLS on September 8, 2009, at 11:31:51
In reply to Re: Suggestions re: Someone Who Refuses Medications » SLS, posted by 49er on September 7, 2009, at 10:19:42
> Do you feel anyone with schizophrenia can recover without meds?
Yes. I believe spontaneous remissions occur, but I don't know at what rate. I think it is far less than what is seen with depression.
What is the rate?
> If you don't, then it really is pointless for us to be having this discussion.
Why, just because I disagree with you? If you posit that spontaneous remissions are possible, then I guess you really have no idea if alternative treatments work at all, unless, of course, a study is performed with a placebo comparator. I'm sure you could find some. It would be interesting to compare values.
> I did want to discuss the medication issue. Not to do a "you too" but I have found your advice for tapering medication disturbing also. So the feeling is mutual.
I am not advocating an abrupt discontinuation of medication. I never said I did.
You wrote, "One more thing - I would encourage your wife to reinstate the last med to the dose that she was last stabilized at and taper it very slowly - 2.5 to 5% of current dose every 3 to 6 weeks.. It is quite clear from the fact that she has been hospitalized from discontinuing these meds that she cold turkeying them or tapering too fast had an adverse effect."
My problem is that you appear to be suggesting that people with schizophrenia who taper their medication according to your prescription will not relapse. Where is the evidence for this? I'm sure you can find conjecture all over the Internet, but that is nothing new. Should I venture to guess that you view any decompensation during your prescribed taper period as actually a rebound psychosis rather than a true relapse, and that tapering even more gradually is indicated? Is such a rebound phenomenon the reason why people are hospitalized after discontinuing their medication, as you believe to be the case here?
How do you know when someone with schizophrenia is ready to come off medication? Is there any danger of not responding to an antipsychotic drug after relapse occurs?
- Scott
Posted by 49er on September 12, 2009, at 8:58:19
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by SLS on September 8, 2009, at 11:31:51
Hi Scott,
Sorry for my late response.,
I don't know what the rate is for spontaneous admission. I would like to say 100%:)
I didn't mean to imply you can't disagree with me. Of course you can.
But here is what I am getting at. If you never believe that people can make it without meds and I never believe that they can make it with meds, then what is the point of having a discussion? We both would be entrenched in our positions, it would be like playing the same stale musical notes over and over.
Of course, people might be thinking that right now:)
What I meant about your medication tapering views is that you have advocated drugs like mood stabalizers to taper off a med. I found that disturbing because I feel you still will have a drug to taper off of and that could lead to more withdrawal symptoms.
Of course, in some situations, there may not be a choice such as severe insomnia.
I never said that someone with schizophrenia who tapers slowly won't relapse. But the odd are sure less.
By the way, on my old computer, I did have a link to a study supporting that. Unfortunately, I haven't been able to find it.
I am sure you are saying, "yeah right 49er, they all say that". But I am telling you the truth.
But again, there aren't going to be studies because the mentality of the mental health industry is that people need to stay on meds for life.
Let me give you an example of what I am talking about with tapering meds too quickly and relapse
Ryan Yorke, the son of Laurie Yorke, the administrator of Paxil Progress Boards, suffered a psychosis due to a Paxil tapering schedule that was way too fast. People would have given him all sorts of mental health labels.
Fast foward to about 5 years off of Paxil (I hope I have that right), he is fine and has no mental illness whatsoever.
Granted, he never had schizophrenia but I think the example is relevant.
I don't think there is ever a perfect time for coming off of medication. When I started tapering, a close relative died and I dealt with unemployment. I also had to deal with severe insomnia.
I now have a permanent job.
My answer to your question is I don't think anyone knows.
But if they want to, they should be supported in that decision.
Finally, if you still think I am nuts, let me ask you this. We allow people to refuse regular medical treatments that might be deadly. We don't usually force them in a hospital against their will even they have the potential to kill someone while driving due to not taking their medication.
But for some reason, when you have a mental health label, this changes.
Anyway, I have said enough for now.
Posted by SLS on September 12, 2009, at 12:35:14
In reply to Re: Suggestions re: Someone Who Refuses Medications » SLS, posted by 49er on September 12, 2009, at 8:58:19
I don't think either one of us is crazy. I think we both want the same thing - healthy and happy people.
I agree with you that the discontinuation of antipsychotics not be abrupt, but, rather, tapered. This is to help prevent the rebound psychosis that I alluded to in my previous post, and that speaks to your justified concerns. There are studies indicating that there is a supersensitivity of dopamine receptors that develops with chronic use of antipsychotics that facilitates this type of reaction. I don't know what the percentage is of people who react this way, but it seems to be a small minority. Not unrelated to this phenomenon, is the medication break-through that occurs, despite continued neuroleptic treatment. This is also thought to occur in some cases as the result of the development of supersensitivity. However, it can be the result of an increase in psychosocial stressors. Unfortunately, there are a few people who become resistant to subsequent attempts at treatment with antipsychotics. Again, it is theorized that this is the result of the development of dopamine supersensitivities.
It is the theory of an induction of dopamine receptor supersensitivity from chronic exposure to antipsychotics that becomes the thread that links withdrawal psychosis, medication breakthrough, and subsequent treatment resistance. However, these things are relatively uncommon. The decision to treat or not treat becomes a balancing act between functionality and the risk of drug-related adverse events.
I don't think it serves any further for the two of us to remark on the competency of a person in the midst of a psychotic or delusional schizophrenic episode. It is almost like we are talking about two different illnesses. People with more severe cases of schizophrenia can remain unreactive to questioning, let alone be relied upon to come to well deliberated decisions relating to the management of their welfare. The type of person you describe is functional enough to at least comprehend the question.
I do not think that the people in the medical profession have conspired to produce protocols of treatment that they know are detrimental to the health of people with schizophrenia. As one would expect, there are consensuses arrived at through investigation and deliberation. Sometimes, they actually get it right.
- Scott
Posted by Phillipa on September 12, 2009, at 20:36:33
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by SLS on September 12, 2009, at 12:35:14
Well put Scott. Phillipa
Posted by 49er on September 13, 2009, at 7:12:52
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by SLS on September 12, 2009, at 12:35:14
<<I don't think either one of us is crazy. I think we both want the same thing - healthy and happy people.>>
Well, you're not but people say I am:). In all seriousness, we do want the same thing.
<<I agree with you that the discontinuation of antipsychotics not be abrupt, but, rather, tapered. This is to help prevent the rebound psychosis that I alluded to in my previous post, and that speaks to your justified concerns. There are studies indicating that there is a supersensitivity of dopamine receptors that develops with chronic use of antipsychotics that facilitates this type of reaction. I don't know what the percentage is of people who react this way, but it seems to be a small minority.>>
How do you know it is a small minority since this is not going be studied usually in the medical community?
"Not unrelated to this phenomenon, is the medication break-through that occurs, despite continued neuroleptic treatment. This is also thought to occur in some cases as the result of the development of supersensitivity. However, it can be the result of an increase in psychosocial stressors. Unfortunately, there are a few people who become resistant to subsequent attempts at treatment with antipsychotics. Again, it is theorized that this is the result of the development of dopamine supersensitivities."
Actually, it sounds like your describing poopout which happens with quite a few psychotropic medications.
"It is the theory of an induction of dopamine receptor supersensitivity from chronic exposure to antipsychotics that becomes the thread that links withdrawal psychosis, medication breakthrough, and subsequent treatment resistance. However, these things are relatively uncommon."
Again, how do you know since the medical community still mostly minimizes withdrawal issues?
""The decision to treat or not treat becomes a balancing act between functionality and the risk of drug-related adverse events."
We definitely agree on this.
"I don't think it serves any further for the two of us to remark on the competency of a person in the midst of a psychotic or delusional schizophrenic episode. It is almost like we are talking about two different illnesses. People with more severe cases of schizophrenia can remain unreactive to questioning, let alone be relied upon to come to well deliberated decisions relating to the management of their welfare."What happens when they have periods of competency? Not all schizophrenics are going to be non reactive 100% of the time.
<<The type of person you describe is functional enough to at least comprehend the question. >>
Can you clarify? I am not sure what you're talking about.
<< I do not think that the people in the medical profession have conspired to produce protocols of treatment that they know are detrimental to the health of people with schizophrenia. As one would expect, there are consensuses arrived at through investigation and deliberation. Sometimes, they actually get it right.>>Please reread what I said as I have never made that claim. I think doctors get stuck in the we have done it this way forever type of thinking and we're not changing.
I gave you the example of my psychiatrist and pharmacist who questioned why I was tapering my meds slowly even though they admitted what I was doing was safe.
Also, the studies you think are the gold standard are not always the ultimate authority as they can be flawed for varios reasons.
49er
Posted by SLS on September 13, 2009, at 9:09:41
In reply to Re: Suggestions re: Someone Who Refuses Medications » SLS, posted by 49er on September 13, 2009, at 7:12:52
Again, I agree with you that antipsychotics should be tapered. I even like your suggestion to restart a medication if withdrawal symptoms appear as the result of an abrupt discontinuation. However, I don't know how you can justify the necessity to follow your formula of a 5% reduction every 3-6 weeks. I'm going to let you do a little math for me. How many weeks would it take to arrive at a total discontinuation of an antipsychotic at the taper rate you recommend?
Regarding the variation in the presentation of schizophrenia and the issue of competency to make treatment decisions, I guess we differ on what each of us has experienced as observers of people afflicted with schizophrenia or psychotic mania. I have first hand experience with the latter. To be clear, I am not advocating the forced medicating of people who are functional enough to remain as outpatients. However, I think there are times when encouragement to accept medication is critical, despite the verbalizations of the patient. There isn't necessarily a lack of respect for patients, but there can be lack of confidence in their judgment and a disagreement as to what is best for their welfare. That's part of the job of the health workers overseeing the care of others, regardless of the nature of the illness. It is unfortunate that, in mental illness, the processes that are necessary to effectively deliberate decisions are impaired in many cases. I think this is what separates these illnesses from all others.
- Scott
Posted by 49er on September 13, 2009, at 10:16:43
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by SLS on September 13, 2009, at 9:09:41
<<Again, I agree with you that antipsychotics should be tapered. I even like your suggestion to restart a medication if withdrawal symptoms appear as the result of an abrupt discontinuation. However, I don't know how you can justify the necessity to follow your formula of a 5% reduction every 3-6 weeks. I'm going to let you do a little math for me. How many weeks would it take to arrive at a total discontinuation of an antipsychotic at the taper rate you recommend?>>
I can justify the necessity because that that is the safe approach to take usually. A person may be able to get away with a fast taper but the problem is by the time they find out they can't, it might be too late.
According to my withdrawal spreadsheet, if a person started tapering a med at 100mg every 3 weeks, they would be at 2.5mg by 11/3/2013.
Yes, that is a long time, no question. But I would be willing to bet you that the person who tapers slowly vs. the one who tapers alot faster is going to have a much better chance of staying off of meds permanently.
Why is that so threatening to you?
Of course, there are exceptions to every rule. If someone has a life threatening condition that is caused by a med, then obviously tapering slowly probably isn't the answer. But for alot of people, it is.
To answer your question, if someone is on 100mg of a drug and tapers by 5% every 3 weeks and started today,
<<To be clear, I am not advocating the forced medicating of people who are functional enough to remain as outpatients. However, I think there are times when encouragement to accept medication is critical, despite the verbalizations of the patient. There isn't necessarily a lack of respect for patients, but there can be lack of confidence in their judgment and a disagreement as to what is best for their welfare.>>
Frankly, I find that frightening. So really this isn't about a patient being functional vs. non functional. Essentially, you're saying that because someone has a mental health label, they don't have the judgment to decide what is best for their welfare and they need to take meds come heck or high water. Side effects be d---med.
Sadly, your view is shared by many mental health professionals.
" That's part of the job of the health workers overseeing the care of others, regardless of the nature of the illness. It is unfortunate that, in mental illness, the processes that are necessary to effectively deliberate decisions are impaired in many cases. I think this is what separates these illnesses from all others.""
Uh, someone who doesn't manage his/her diabetes, blood pressure can be impaired and can cause car wrecks. But we don't court order them to take their medication.
49er
Posted by SLS on September 13, 2009, at 12:47:07
In reply to Re: Suggestions re: Someone Who Refuses Medications » SLS, posted by 49er on September 13, 2009, at 10:16:43
> I would be willing to bet you that the person who tapers slowly vs. the one who tapers alot faster is going to have a much better chance of staying off of meds permanently
And you find it necessary to reiterate what we both already agree on?
> Why is that so threatening to you?
That's silly - and just a touch insulting.
> According to my withdrawal spreadsheet, if a person started tapering a med at 100mg every 3 weeks, they would be at 2.5mg by 11/3/2013.
I'm glad you did the calculus. I stink at it.
What is the origin of your formulation?
One of my issues with the length of your prescription is that you are exposing dopamine receptors to an antagonist for years beyond the point when someone decides to discontinue it.
I would like to know under what circumstances you would reinstate full treatment during a taper period once schizoid symptoms re-emerge. What symptoms do you screen for?
If you were a doctor, what criteria would you use to determine when it is time to attempt treatment discontinuation?
As for the rest of your argument, I have nothing more to add that hasn't already been stated.
- Scott
Posted by 49er on September 13, 2009, at 14:50:23
In reply to Re: Suggestions re: Someone Who Refuses Medications » 49er, posted by SLS on September 13, 2009, at 12:47:07
Scott,
You asked me to justify my tapering schedule and I told you the reason why. I don't understand why you're now saying I am reiterating what we agree on. If you agreed, why did you ask me:)?
Sorry if I came across as insulting. That wasn't my intention.
But when you seem bothered by something for no reason at all, that is why I asked why it was so threatening. If you had given the reason about being exposed to the dopamine antagonists in my previous post, then I would have understood your question better.
You make a good point but in my opinion, that risk is less than the one of tapering too quickly. But I am puzzled by your concern because you think most people need to be on meds anyway so why aren't you worried in that case about the exposure?
As far as calculations, I can't take credit for that as it was done by the husband of a Paxil Progress Board member. If you want a copy, I would be happy to send it to you by babble mail. Just let me know.
It really is great because you can plug in any information and figure out how long your tapering will take.
As far as when someone is ready to come off meds, I think if they have a good social support system, that is key. I would also make sure they had good coping techniques. And of course, their desires should be taken into account. I wouldn't force someone off meds who wanted to stay on them.
As far as reinstituting treatment, it might be necessary to temporarily boost the dose up a notch just to stabilize the person and then tapering could start again at some point.
When would you consider taking someone off of meds who has schizophrenia?
49er
Posted by SLS on September 13, 2009, at 16:15:16
In reply to Re: Suggestions re: Someone Who Refuses Medications, posted by 49er on September 13, 2009, at 14:50:23
> As far as calculations, I can't take credit for that as it was done by the husband of a Paxil Progress Board member. If you want a copy, I would be happy to send it to you by babble mail. Just let me know.
Yes, I would be very interested in seeing it and learning what evidence or rationale was used in its design.
Thanks.
- Scott
This is the end of the thread.
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