Hello, I have been on seroquel (quetiapine) for about 2 years, and although it has succesfully gotten rid of prettyu much all the bad symptoms, I also feel tired and sort of numbed by it. Like emotionally I feel very little nowadays. My psychiatrist suggested clozaril because it is known to help motivation of people with schizophrenia. The thing is it also entails blood tests weekly andi have never spoken to anyone taking it whereas I know a lot more about seroquel. Does anyone here take it or know someone taking it? Any experiences would be a big help good or bad, I just want to know if its worth the amount of trouble that will come with it, or if the bad outweighs the good etc.
Well, you have to get get a blood test every week for the first month or so. Then its every two weeks to see if you are developing a white blood cell disease. With our son who was 21 his heart rate went up to close to 120 at resting. You also run the risk of developing tardive dyskonesia, neurolyptic malignant syndrome among many others. One bad side effect no one talks about is pscychogenic polydipsia. That is where you have a craving for water constantly. Some have said that occurs in schizophrenia patients up to 17% of the time. I think the antipsychotic meds to treat the schozophrenia are the culprit. I believe some of the receptor sites in the brain related to thirst are affected by the meds. There is a case that a person developed psychogenic polydipsia after a traumatic brain injury which to me shows that it is damage to the brain which causes the condition. As Chlozaril is very effective in blunting the higher brain activity in the frontal lobe to subdue symptoms it is the same as injuring the brain. It is simply a chemical lobotomy - how convenient.
Chlozaril is very expensive - probably $5 to $10 a tablet - no wonder its called the gold standard. In my opinion you should only be on these meds, including seroquel, for only a short period of time to allow yourself to recover from what caused the symptoms to surface. Using them long term changes your brain chemistry and then you have to try other meds to get the same result. Please read Dr. Peter Breggin's book - Your Drug may be your problem. He gives good advice on getting off these powerful meds that don't cure anything - they just blunt the symptoms.
Why don't you also consider takinig Omega 3 fatty acid suplement which you can find in health food stores as well as vitamin B3 - niacin. Symptoms have diminished for some schizophrenics taking these supplements just as good as any antipsychotic. However, the drug rep will not tell your doctor that little fact. Your doctor is probably very dependent on that drug rep to tell him what to prescribe. Am I cynical? You bet I am after what we've been through.
One study showed there is much less incidence of schizophrenia iin Japan than New Zealand. The reason the study concluded was the higher intake of fish with its high amounts of Omega 3 versus New Zealand where they eat more land animals. Cattle fed corn to fatten them up are high in Omega 6 but low in Omega 3. Omega 3 is essential for cell membrane health among other things.
Try to find grass fed beef if you can which is higher in Omega 3 or learn to like sardines or take fish oil tablets. Good luck and do a lot of research - the only person you can really depend on is yourself to find the right answer.
Thank you mike thats very helpful Also very interesting about the omega 3 thing. I started taking cod liver oil pills a bit ago although I havent tried them without the meds. I like what you were saying about not taking any meds long term. I dont think its good to have a checmical dependancy whatever it is that you are taking. The thing is that I tried slowly reducing the seroqel untill I wasnt taking any once and I had kind of a relapse. Also the water thing is wierd, because I always have drunk more water than anyone I know, even as a little kid. My sister thought I was diabetic or something. I may well try taking more fish oil and reducing the pills a little to see if theres any truth in that theory, it cant hurt eh. Once again thanks for responding, there is no leaflet or video that will give you as much impartial info as a person whos actually had experience.
P.S. Ill NEVER learn to like sardines they are the fish of evil, second only to the anchovy which i believe was crafted by satan while god was resting on sunday.
I'm glad you have the mindset not to let the Seroquel do all the work. Remember, it cures nothing - it just blunts the sympotms while opening the back door to some horrendous possible side effects. Short term usage may be ok.
When you had the relapse of symptoms it was probably the result of a "rebound" effect when means the symptoms pop up you were trying to get rid of. You should go slowly in titrating off those meds - no more than 10% of the dosage in a two or three week period. The drug stays in the system for a period of time even after you quit taking it - just like some women experience the effects of birth control pills months after they quit taking them.
You might also try adding the niacin (B3) to the fish oil. There is a flush free formula which is better although more expensive.
I can understand your revulsion about sardines - there is a difference between bristling and sild sardines, but I won't go into that. Anyhow, that's why God came back after the sabbath and brought in the fish oil in gel caps - much more palatable than those little fish.
I would also recommend Leo Galland's MD book - The Four Pillars of Healing as well as any of Peter Breggin's MD books.. Breggin really exposes the house of cards many of these meds are built on. I wish I had read his Toxic Psychiatry years ago or his later one - Your Drug May be Your Problem.
Once you are on clozaphine there may be no return. We are trying to get our son off of Clozaril (clozapine) and it is very, very difficult. Clozapine changes the eeg in the brain. I read a reference to one study that said 65% of the patients using it could not get off the drug. Another study, published in PubMed (PMID 12487951)said discontinuation of clozapine in a man (the patient was trying to change his med to sertindol) led to serious psychotic and somatic symptoms. He was forced to get back on the clozapine. Another study in PubMed which was a clincical study in Beverly Hills, Ca (Cutler PMID 11305842) healthy volunteers tried dopamine-blocking antipsychotics in the same dose that are tolerated "well" by schizophrenic patients. I believe, reading between the lines, clozapaine was the drug being used since the study mentioned it. The significant adverse results were so bad to the healty volunteers they had to stop giving it to them. The conclusion was that these drugs should not be used in studies with healthy people - just the poor people that have a problem. If you think about it what does that tell you?
The Following User Says Thank You to Mike in Dallas For This Useful Post: jtguy (09-15-2011)
Please post your anti-medication and anti-psychiatry views on those websites. It is irresponsible and dangerous to advise people that these medications cause irreversible damage to the brain and to not take their medication. It is life threatening for many people to not take these medications which are safer than many other modern drugs that treat chronic illnesses. It scares people for no just reason and feeds into paranoia. It is incorrect information! Have you seen the damage to people who are left untreated, psychotic and homeless? Do you not see these people on your streets? My son was one of these homeless and psychotic people who became malnutritioned and frostbitten at the age of 22. Clozapine saved his life and I have seen first hand how long term psychosis can damage the brain!
Dr. Breggan is not a highly respected phsychiatrist in the mental health community. He needs to update his knowledge base as it is behind the times as far as schizophrenia is concerned. Do you actually believe that all of the most highly respected and educated psychiatrists that treat schizophrenia today are using drugs that "damage" the brain because they don't know any better or don't care!?
Search for research on the treatment of schizophrenia in peer reviewed and respected journals not some outdated book. Anyone can write a book but a good psychiatrist writes a book based on evidence based reseach not his whimsical theories about spiritual overwhelm as causing schizophrenia....PLEASE.
Schizophrenia is a brain disease.
You have either been brainwashed or are wading deep in De Nile.
I appreciate any honest discussion. This forum, however, is not the place for insulting the other members. We are all concerned parents, family members or friends of people who have been diagnosed with schizophrenia or have the symptoms of schizophrenia. Our desire is that our friends and loved ones could lead normal productive lives. Probably half of the street people have some sort of mental disorder such as schizophrenia. I can appreciate your great relief at having him back safe and am very glad for you.
I will admit I can be too acidic in my comments, and I don't want to discourage anyone from getting the proper medical treatment. However, if there are some alternatives to taking the powerful brain altering drugs people might want to know that option. I do admit anti-psyhotics such as clozapine can be helpful in working to diminish the "positive" symptoms such as hallucinations and/or delusions which will allow time for psychosocial treatments to work. To rely on these powerful meds long term, in my opinion, means increasing the risk of serious side effects which may not be reversable.
My son is also 22 years old and has been on clozapine the past year after taking a myriad of medicines over the past seven or eight years. We weaned him off of clozapine about five weeks ago. His heart rate on clozapine was around 118 at resting. He was gaining much weight and still had delusions. Since being off clozapine his heart rate has returned to normal, his weight has come down. He still has delusions which we are addressing although he is easier to work with now. We are not out of the woods, but we feel much better on the pathway we are on now. My desire was to find other parents on this site who could perhaps be helpful to us. Instead, I found many posts of people trying to figure out which med might be helpful to them since they had tried so many others. I felt the responsible to share what we found in the hopes in could help others - especially those who think they might be schizophrenic. I wish we had known seven years ago what we know now. We feel seven years of our son's life was wasted due to psychiatrists experimenting on him to see what drug might subdue his symptoms.
I was fortunate to take early retirement from my job two years ago so I could focus on our son. On my job I was responsible for tax audit issues for the domestic operations of one of the largest corporations in the world. I say that, not to boast, but to let you know I don't take information simply at face value and am very skeptical of any claims or information which cannot be backed up. I haven't based my opinions just on reading Breggin's book. Our son was at a facility which gave me and my wife, who is a registered nurse, time to start researching our son's condition. I realize most people don't have the luxury of having the time to research these issues like we have.
Dr. Breggin - who has been called the "conscience of American psychiatry", was very helpful in opening our eyes that there is a whole other school of thought in treating schizophrenia. Its been a while since I've read his books, so I'm not dependant on him for my conclusions. I currently read the studies going on at the National Institute of Health, the studies published in Pub Med and other highly respected journals such as the Lancet. I am still looking for the "smoking gun" which you presume has been found and relied upon by all the respected psychiatrists. There are also quite a number of other books out by clinical psychiatrists and psychologists who have taken the view of minimizing the use of these medicines. I am very open to any recent study that will show schizophrenia to be caused by a physical disease or some genetic flaw, so please cite those if you reply. In fact, it is the lack of clear evidence, double blind studies and peer review that Breggin and others criticize. His books mainly examine the evidence the establishment is relying upon. Please show me the studies that clearly demonstrates schizophrenia is a disease. Many of your "respected" psychiatrists in the past were also recommending insulin shock therapy, electroconvulsive shock therapy, frontal lobotomy and other enlightened treatments.
There are other medical doctors which consider have credentials such as Dr. Loren Mosher, MD, another Harvard trained psychiatrist who resigned from the American Psychiatric Association (APA) due to the conflict of interest between the pharmaceutical industry and the APA. Dr. Mosher was former Chief of Studies of Schizophrenia, National Institue of Mental Health, so I would not call him brainwashed or in DeNile. He also recommends non drug alternatives, although he acknowleges the meds may be helpful for short term intervention. He has had success in treating schizophrenia without the meds. I will say since he resigned from the APA he has not been too popular in that circle just as you say Dr. Breggin is not well respected anymore.
In case you are not familiar with the mechanism it may be helpful in understanding how the meds work. Clozapine, like most anti-psychotics, work by binding to the dopamine receptor sites in the neuron pathways. Anti-depressants work differently by blocking the re-uptake of serotonin by the brain cells. The dopamine blocking action of the anti-psychotics cuts off or buries many of the alarming thoughts going through a person's brain. This blocking action does allows them relief and thus a chance of getting back to more of a normal life. This can be very helpful in the short term if a person is able to determine and deal with the root cause of his problem. Psychotherapy has shown that emotional trauma/abuse or severe stress can be the cause of many of the problems which result in schizophrenia. The brain is very adept at self defense mechanisms.
However, the theory used by the drug companies and by doctors prescribing anti-psychotics is that there is an imbalance in the dopamine levels. They propose there is too much dopamine in the brain of a schizophrenic. Therefore, if you block the transfer of this "excess" dopamine at the dopamine receptor sites you will help the person. Unfortunately, clinical studies have not been able to prove the theory of the "chemical imbalance" model. Dopamine eventually breaks down into different components called metabolites. These metabolites can be measured in the urine, plasma or spinal fluid. Homovanillic acid (HVA) is a major metabolite of dopamine, and it is a measure of dopamine turnover in the brain. According to the theory then, the HVA should be higher in people with schizophrenia than normal people if schizophrenics have too much dopamine. However, that has not been proven. On the contray, in The Textbook of Psychopharmacology published in 1998 by the American Psychiatric Association it is quoted:
HVA (homovanillic acid) levels in schizophrenic patients generally do not differ from those in control subjects. In fact, some investigators have found lower-than-normal levels of CSF HVA that are inversely correlated with the the severity of negative symptoms in schizophrenic patients. (p 595).
The chemical inbalance theory, therefore, which is the basis for prescribing both anti-psychotics and anti-depressants has not yet been proven. Yes, many people have been helped, but few have been cured. There must be a better way than a lifetime of med use with the negative side effects.
My observation of people taking anti-psychotics is that it normally leaves them emotionally flat. This is because the binding is to the dopamine receptor sites in the neuron pathways to the frontal lobe where the higher thought processes of the brain occur. Studies have also shown the brain begins to counteract the anti-psychotic meds by developing new receptor sites in the neurons. The dosage then, may need to be increased or a different medicine applied to get the same effect. However, in one study I read, 65% of the patients were unable to withdraw from clozapine without severe side effects. Once you are on clozapine it is difficult to get off. Also, if a person suddenly quits taking his medicine a rebound effect can occur with symptoms much worse than when started. A person should never abrubtly quit taking their medicine.
Autoposies of the brains of people with newly diagnosed schizophrenia also have showed no difference with the brains of normal people. There is a difference, however, after long term medical drug use with shrinkage in some parts of the brain. There has been no evidence in duplicated studies that proved schizophrenia is a physical disease. Consequently, the meds don't cure this condition - they only blunt the symptoms.
The Lancet published a study that showed that atypical antipsychotics cause swelling of the brain stem while the older antipsychotics cause swelling in both the brain stem and frontal lobe.
Both of our sons are 22. How about if we both post on this site the progress of each of our sons on December 31, 2005, which is in two years. If my son has regressed and is taking the latest medicine I will be open to admit it. I want the people on this site to be informed. However, there should be room on this site for alternative ideas instead of the post after post of "which medicine may be helpful to me now." I will do my best to be sensitive to those taking meds and not to cause them any additional psychosis. However, for conscience sake I feel I have to be honest to what I have learned which hopefully will be helpful to some.
In the meantime I wish you the best for you and your son. I do sincerely wish that he will lead a normal and happy life in whatever treatment method he uses.
Last edited by Mike in Dallas; 12-31-2003 at 04:51 PM.
Eeporge, your decision to use this drug is between you and your doctor and it might be a good idea to talk to others who are actually taking it. I can tell you
about my sons experience with Clozapine and what I know about this drug.
Clozapine (Clozaril) was the first atypical antipsychotic and is still considered today to be the best or "gold standard" even against the newer atypicals such as Olanzapine (Zyprexa), Quetiapine (Seroquel) etc. I'm very curious and excited about the newer drug Aripiprizol (Abilify) as there is talk that it may match Clozapine in it's benefical effects but without the side effects. Time will tell but from the anecdotal talk, people seem to be happy with it.
Clozapine and Olanzapine seem to have an effect of causing weight gain which is associated with diabetes. You need to be vigilant with a healthy diet and exercise to not gain the weight as it is easier to keep it off than to take it off after. According to one pharmacologist, weight gain plateaus after about 6mths.
Anytime I have questions about drugs I ask a trusted local pharmacist who is experienced with medications for mental illness and feel more secure with their information.
My son only experienced a moderate weight gain. He has a good psychiatric team with a psychiatrist who works with him and his side effects. He is on the most lowest and optimal dose for him (400mg/day). He experienced a great deal of sedation so his doctor has him take the majority of his dose at bedtime. He experienced hyper salivation when sleeping and used atropine drops in the first 6mths as well as towels on his pillow. The drops worked but were also very drying and he preferred to go without them and after 1 1/2 years on Clozapine he does not seem to have a big problem with this. Suck or chewing sugarless candy or gum to increases swallowing.
Clozapine is used for treament resistent patients mainly. Those who have severe positive and negative symptoms with no or little relief from the other drugs. It causes agranulocyotis in less than 1% of those taking it. Agranulocytosis is a dcreased number of white blood cells which then makes one suceptible to infections. Agranulocytosis is caused by many other commmon drugs including tylenol but it is very rare. The risk of suicide by those not being treated, in this population, is greater than the risk of death due to agranulocytosis. With blood monitoring the risk of agranulocytosis is 0.38%.
Clozapine does not extrapyrimidal symptoms (EPS) or tardive dyskinesia (TD) and has been shown to reduce TD in Parkinsons patients and those who developed it while taking older (typical) antipsychotics.
Clozapine's supperior effects may be due to activity at a broad range of receptors outside the dopamine (DA) system. Of particular interest is clozapine's high affinity for 5-HT receptors including 5-HT2, 5-HT3, 5-HT6 and 5-HT7 subtypes. Clozapine has high affinity for a1, a2 and muscarinic receptors, while it also has significant effect on GABA-ergic and glutamatergic mechanisms.
Here is a Cochrane Review on Clozapine where they have compared all of the studeis on Clozapine to date:
Clozapine versus typical neuroleptic medication for schizophrenia (Cochrane Review)
Wahlbeck K, Cheine M, Essali MA
Reviewers' conclusions: This systematic review confirms that clozapine is convincingly more effective than typical antipsychotic drugs in reducing symptoms of schizophrenia, producing clinically meaningful improvements and postponing relapse. Patients were more satisfied with clozapine treatment than with typical neuroleptic treatment. The clinical effect of clozapine, however, is at least in the short term not reflected in measures of global functioning such as ability to leave the hospital and maintain an occupation. The short-term benefits of clozapine have to be weighed against the risk of side effects. Within the context of trials, the potentially dangerous blood white cell decline seems to be more frequent in children and adolescents and in the elderly than in young adults or middle-aged people.The existing trials have largely neglected to assess the views of the patients and families on clozapine treatment. More community-based long-term randomised trials are needed to evaluate the efficacy of clozapine on global and social functioning in the community, as well as trials in special groups such as people with learning disabilities. The effects of clozapine in comparison to conventional neuroleptics in hospitalised adults is now well established and the conduct of further hospital-based short-term trials would be a waste of resources.
Citation: Wahlbeck K, Cheine M, Essali MA. Clozapine versus typical neuroleptic medication for schizophrenia (Cochrane Methodology Review). In: The Cochrane Library, Issue 4, 2003. Chichester, UK: John Wiley & Sons, Ltd.
Focus on Clozapine
Miriam Naheed and Ben GreenDr Miriam Naheed, Specialist Registrar, Hollins Park Hospital, Warrington, Cheshire and Dr Ben Green, Senior Lecturer in
Psychiatry, Royal Liverpool University Hospital, L69 3GA.
First Published in Psychiatry On-Line as Version 1.0 10/5/2000
Clinical Psychopharmacology Seminar
Tardive DyskinesiaOriginal Author: Bruce Alexander, Pharm.D, BCPP
Latest Revisers: Bruce Alexander, Pharm.D, BCPP, Brian C. Lund, Pharm.D.
Creation Date: 1996
Last Revision Date: October 1999
The University of Iowa-Virtual Hospital (a digital library of health information)
Breier, A., Tran, P., Harrea, J., Tollefson, G., & Bymaster,F. Current Issues in the Psychophramacology of Schizophrenia. Lippincott. Philadelphia. 2001
You are correct that this community is shared by members who have a loved one or have schizophrenia themselves and that insulting people is not the best form of communication. I apologize for insulting you. I have just happened upon this community and thought I would have a read and see how things were under the topic of schizophrenia in this forum. When I read your posts I was depressed. I became despondent about the worldview of schizophrenia and what I have normally done in the past is walk away feeling like the battle for the best of treatment and outcomes will never be won with this illness. I would just lie down and accept that the ant-psychiatry views will continue to propagate stigma and prevent public education about schizophrenia forever.
Then I became furious and thought to myself, NO MORE, am I going to passively let incorrect information put my sonís life and otherís at risk. Iím going to speak up and say something. The anti-psychiatry movement has been dominating the health of those with schizophrenia far too long and the dam pendulum needs to swing back to the middle where it belongs! It is a direct result of ant-psychiatry thought that the laws where I live allowed my extremely ill son to wonder the streets putting his life and health at severe risk. In no other medical condition do we allow such mass suffering and idly stand by and watch it happen before our eyes.
Until you are a parent of a very ill child with schizophrenia who is in the situation of being homeless and psychotic, can you fully appreciate the suffering. My familiesí suffering will not be in vain! You do not see those with dementia or mental retardation left on the street until they decide to get help! Anti-psychiatry touches the very core of my suffering.
My background is in Early Childhood Education in which I spent my career working with people with severe developmental disorders of all ages. My ex-husband and I spent time and effort with psychologists trying to work out his problems that became worse over the years leading to unemployment issues. After our divorce and our son developing schizophrenia, my ex husband was diagnosed with bipolar. I can say from our family experience that undiagnosed and untreated bipolar gets worse with time. He is lucky to now be in treatment himself but it is a bit late and the result is a disability pension for him as well. I currently work full-time and Iím also a student. I can relate to the movie Lorenzoís Oil, probably on the same level as you and your wife.
I can also relate to your frustration and sheer lack of confidence with the mental health system as it stands. I have had the same feelings and experiences and felt that if we just did not become apart of the system then things would be better. The difference being that the ant-psychiatry movement causes my familiesí suffering where it seems to do the opposite for your family.
We have experienced less than competent psychiatrists but like all areas of occupations there are poor, mediocre and good. Managing the system is a skill in itself. I have had feelings and thoughts of anti-psychiatry myself but they are on a different path than yours. I view doctor Torreyís book, Surviving Schizophrenia: A Manual for Families, Consumers and Providers, as the bible on schizophrenia, as do many family members. Dr. Torrey is a psychiatrist with a sister with schizophrenia. He also has written many books, which look at how and why psychiatry has failed many people. I personally enjoy a book titled, Madness on the Couch, Blaming the Victim in the Heyday of Psychoanalysis, by Edward Dolnick.
I could find articles for the argument for the brain disease model for schizophrenia Mike but I really donít have the energy right now. Search fMRI and MRI studies. It really is just semantics. Disease is defined in Websterís Universal College Dictionary as; a disordered or abnormal condition of an organ or other part of an organism resulting from the effect of a genetic or development errors, infection, nutritional deficiency, toxicity or unfavorable environmental factors. Maybe the word disorder sits better with you. It is defined as "a disturbance in physical or mental health." One sociologist who looks at our beliefs and the issue of terminology is David Karp in his book 'The Burden of Sympathy: How Families Cope with Mental Illness."
I recall first being exposed to the words Ēmental illnessĒ and my son. It used to send shivers through. Why? It all stems back to stigma. Mental illness is something that is caused by poor parenting or the personís own volition. It is something to be ashamed of. Now I certainly see it differently and after 7 years of my son being ill (he is now 25), I no longer get chills from the words mental illness. I have come to the conclusion that perpetuating stigma is caused by our refusal to use the words without shame. Lets not change the word schizophrenia. Letís talk about it openly like we would talk about heart disease, Alzheimerís or cancer. It is a brain illness, biological disorder or disease and it is most certainly not caused by psychological trauma.
Severe psychological trauma or post traumatic stress disorder (PTSD) does have symptoms similar to schizophrenia but the hallucinations are flashbacks of people and events of the trauma. Other psychological trauma could certainly exacerbate or possibly trigger a predisposition for schizophrenia. Trauma in those who have a mental illness (child abuse, spouse abuse etc) should also be treated along with the mental illness.
There is a q22 chromosome deletion that is specific to one form of schizophrenia. A google search will bring this up. Other genes are also being implicated but as one research psychiatrist noted (Zipursky) we are probably dealing with 10-20 genes that could combine in many ways for a person to present with schizophrenia.
There are a number of theories on the pathophysiology of schizophrenia. I prefer the developmental theory and believe that it will be our answer for the cure. As in autism, there is no definitive cause yet but autism has lost the stigma and blame that schizophrenia still carries. The miracle of drugs for schizophrenia is that my son was as ill as any person with Alzheimerís or autism and I now have him back from that state so that we can have conversations. He laughs and tells jokes (no more flat effect). He is living life rather than just living. I hope the same miracle will soon be there for those with other brain illnesses.
The book that gave me the greatest comfort at the beginning of my son's illness was "When Someone You Love Has a Mental Illness" by Rebecca Woolis.
Thanks for your gracious post. We are really on the same side in this conflict which is to help our sons and others who might have schizophrenia. Its kind of like a large forest fire - some control it by dropping chemical flame retardant from airplanes and others by cutting fire breaks and back burning. Our goal for both of us is to put out the fire which is so crippling.
I think it so good that you are an informed parent - that is the key for everyone because everyone is different and the same treatment or meds may cause different results in different people. I am so glad to hear your son is laughing and telling jokes - that is very encouraging.
Hopefully we can share information which will benefit each other and others. I will certainly lighten up on my med bashing. Thanks again for your kind and informative post.
I've no idea if you still use this message board, but my son (23) has just been prescribed clozapine and I was interested to find different opinions on it.
Is your son still off medication? I would appreciate an update.