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Schizophrenia Message Board


Schizophrenia Board Index


Dear Serene020,

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.

Mike
Dear Mike

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.

I wish you and your family all the best Mike.

Love and hugs
Serene





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