Adult on Autistic Specrum destroyed by psychiatric medications. Are you like me?
“I had direct suicide attacks from Paxil…and flushed it down the toilet.”
DISCLAIMER: I am not a doctor or other healthcare person, nor wish to be. My views expressed in this letter and associated papers are my opinion. I do not suggest others make healthcare decisions based on anything in my writings, but should study their own situations carefully and do their own research in making their decisions so as to be capable of being as responsible as possible.
BUT, I maintain that reality belongs to everyone, and everyone that chooses to should be allowed to be responsible for themselves and their own destiny as much as their ability allows them. I believe this can be much greater than our society generally acknowledges.
In the fall of 1983 I apparently received an injury to my mid back at work. The pain was delayed but then soon became massive. The Dr’s I saw were largely unable to help except through large amounts of painkillers. In the fall of 1984 a General Practitioner started me on the antidepressant Surmontil, in the hopes it would help the pain by elevating serotonin levels. It didn’t. But immediately I had and reported the symptoms of “Serotonin overload, or as I understand it Serotonin Syndrome.” The doctor did not respond this to. Also I had the onset of depression and other symptoms such as a distancing from reality, loss of emotional control etc. This of course is being blamed on the pain, or the pain being blamed on the depression etc., so increase the Surmontil etc. I also developed a bad case of “Restless Leg Syndrome,” where almost endless weird sensations in and near the skin of the legs leads to twitching etc and serious discomfort. I have learned since that this can be associated with “Akathisia,” which can result from a range of psychiatric medications and lasted the entire time I was on psychiatric medications but stopped after their refusal.
I eventually conquered the pain myself by independent means. I still needed a duodenal bypass because all the pain and arthritic medications had severely ulcerated the duodenum that it was blocked from scar tissue.
The depression etc continued and grew and I was told how much I needed the antidepressant etc.
The depression grew and with it I slowly but progressively lost cognitive and memory functions, finally by 1990 or so to a severe degree. Also obsessive-compulsive problems grew. The sensory components of the serotonin overload were bad, feelings of scalding and freezing, poor heat tolerance, nausea.
By 1993 with the added burdens of stress and politics at the job I was doing and a turn to very abusive behavior by my then wife I crashed and was ordered to a psychiatric ward in a different hospital in Saskatchewan. There medications were increased with the additions of Haldol and Ativan. Soon I had and reported the increasing symptoms of “Akathisia”, something like restless leg syndrome but much more severe such that non-activity of the legs can be intolerable. This too was reported and ignored.
But the increase in mental illness symptoms was severe including great distancing from reality, depression, massive obsessive compulsive etc. Then I also started getting the warnings that” If I ever stopped taking the medications the R.C.M.P. would bring me in and they would be forced on me.” This came from several psychiatrists as they came and went at that ward.
To shorten the story some, over the years there were many more meds, about 20 weeks of hospitalization and progressively worse mental illness of a variety of kinds. By New Years of 1996 I was totally disabled from work because of it and am still on disability.
From 1996 to 1998 things were severely bad, life becoming a second by second struggle to stay alive, fight suicide, go through the torments of a hell I utterly no ability to understand. I lost the ability to do anything productive beyond quite basic survival, and have no memory of a single thing I can date to the year 1997 etc.
In 1998 I wanted out. I knew these massive meds were causing big problems, as far as I could tell these nonsensical psychiatrists were crazier than I was. I had some of the weirdest lectures and opinions from them. But in my appeals for understanding, remember I was barely hanging on to anything at this time, my insurance company and another mental health agency I was associated with “Ganged up” on me ordering me back to psychiatric care. I gave in.
Then the trouble really got bad. I had direct suicide attacks from Paxil, which were a chore to fight but I recognised them as coming from the Paxil and flushed it down the toilet and stopped seeing the Dr. that prescribed it.
My G.P. at that time agreed to maintain me on simple benzodiazepines such as valium or Ativan until he could get me to a psychiatrist I had heard of in Saskatoon that via the grapevine sounded saner. It didn’t work; I ended up in emergency in Saskatoon that September with a different Psychiatrist that started me on Chlorpromazine, Epival and Risperdal. All of these were disasters and I ended refusing all of them in the next 3 months.
But then in November 1998 I found a very encouraging sounding psychiatrist that had just come to Lloydminster. He stated me on a cocktail as is normal and added Zyprexa. At first, until late in May 1999 the Zyprexa seemed to be helping, though things were still awfully bad. In late May 1999 they really got worse. This led to a doubling of the Zyprexa plus a constantly varying array of meds, some of which I rapidly saw were disastrous and refused and started arguing for washouts, scheduled removal of all medications to do a test. This was consistently promised but avoided. Among the problems was an involuntary movement problem spotted by a social worker and reported to the psychiatrist by her. We discussed this and then it was ignored.
Things got still much worse. This was Hell!
In September I cold turkey refused the Zyprexa and got a huge improvement. The doctor then hospitalized me and removed a sedative cold turkey (immovane), which I wanted to remove slowly. This again precipitated suicidal problems and a new round of meds to be tried and flushed as they all revealed disastrous effects.
The last round was the worst, a combination of Celexa and Tegretol. Here I lost pretty much all emotional and cognitive existence and the serotonin overload symptoms became totally immobolizing, again with no recognition by the psychiatrist. This last round of meds apparently did a lot of long-term damage, I think adding a lot of time to the recovery.
In October 1999 I flushed everything and started the recovery.
To date, and this is still ongoing, I have regained a great deal of my cognitive back, a lot of memory function, a fair amount of stamina, but have a highly advanced and progressive movement disorder and a bad case of Post Traumatic Stress Disorder from the experience.
And as for the symptoms of depression etc I was being treated for, they were the first parts to improve and basically leave.
I now am a licensed user of Medical Marijuana to keep the movement disorder from literally tearing me apart in short order, am also on the immovane (which the last medicating psychiatrist made me suicidal by removing in 1999), with little or no ill effect, this helps with the movements and some PTSD symptoms, I am not under psychiatric care, but get a lot of assistance from my social worker with the PTSD.
From a later psychiatrist that made little attempt to medicate me, books, and the Internet I have learned to a large degree what happened. I will try to cover this more in point form on another paper about the specific medications.
But it gets better. In the fall of 2000 I accidentally ran across a book on autism. In a hurry I discovered I have the highest functioning form, Asperser’s Syndrome, inherited from my mother. After almost 4 years of fighting the system and a great deal of research I have a solid diagnosis from a Psychologist in Edmonton experienced in Autism and with a good record with it. He has also diagnosed the Post Traumatic Stress Disorder.
Asperser’s Syndrome is the highest functioning recognised form of autism. This is believed to be largely or wholly inherited, in my case my mother and members of her family strongly show characteristics of it. The people typically are highly intelligent, creative, responsible, artistic etc, and are often highly capable within their special interests, be they computers, technical, artistic or whatever. They can be walking encyclopedias. But they tend to be clumsy and limited socially. There is data to indicate a high probability of being chemically sensitive such that in some opinions they will tend to have drug reactions similar to mine. The numbers are supposed to include Bill Gates, Albert Einstein, Sir Isaac Newton and many notable others. The most recent numbers of them I have heard for Canada and Saskatchewan are about 1/235 in the population. Almost all diagnosis and assistance for them is restricted to children, adults are generally ignored.
My movement disorder is still undiagnosed after 4 neurologists and a Neuro Psychologist that recognised it as Tardive Dyskinesia, but wouldn’t write it down. Otherwise it has been ignored totally by one neurologist or gets rapidly diagnosed by the others as something inherited, and easily disproved, and the appointment is quickly ended with no follow-up.
It seems to be a combination of tardive dyskinesia plus likely another form of Dystonia caused by at least one other medication. Health Canada accepted the diagnosis of Tardive Dyskinesia suggested by an internist on my medical marijuana application.
The movement disorder has proven to be very progressive and so at an accelerating rate. Without control, especially from the cannabis I will soon go into a “cluster” of events with it that are non stop involving powerful sudden movements of the neck, torso, upper extremities and diaphragm that get very powerful, plus spasming and violent shaking. In a cluster I could soon be unable to look after myself and likely my muscles would tear themselves apart, not to mention bone damage, plus being violently crashed into things in my environment. It also involves a progressive loss of finer motor control at all times, such that now typing is very slow and error prone, my old work of welding and much else is difficult or impossible. Walking is affected.
This also necessitates routine massages, heavy ones, to reduce the sensations involved with the disorder and at times to break movement/sensation loops that can establish that I cannot break myself and which could be fatal by themselves. I have some insurance coverage for this but not enough.
My recovery was also very tough, especially at first, has involved a huge amount of work and discipline on my part, (I get high praise from some for this), has been assisted by the social worker a great deal and sabotaged by others also greatly, including the last medicating psychiatrist and the other mental health agency I mentioned I had been involved with. It seems we do not recognize that psychiatric care causes mental illness, and the patient can be sacrificed to protect the reputation of the system.
In the course of recovery I trained myself on personal computers, had never touched one before, and have taught myself a good deal of photography and computer graphics to the point I could be doing some professional work. I have done a lot of other work too, trying to get back to who I used to be.
In my efforts to get back a life in 2002 I argued and coerced my insurance company to get me a Rehabilitation Consultant which they have, who herself proved to be great, but was constrained to the rules and protocols of the company. After being instructed to pursue several pointless approaches, such as truck driving because there is a high demand, not suitable with medical marijuana etc., I started with a rehab program with a good sounding reputation from a local agency. This resulted in a job in janitorial work that on starting I soon found impossible. I reported this to the employer, a large lumber co and builder of prefab houses, that the job was undoable as described, would require several capable people to attempt it, and needed complete reengineering to be practical.
The employer agreed with me totally, saying my assessment was: “Bang on.” I think this indicates that there was no research into the job for suitability, this employer being that agency’s best supporter for their rehab program.
He told me to reengineer it. I tackled to job and tried to assess it for this. On the first night after work I had a massive PTSD attack from it and withdrew. This ended the entire rehab approach.
The insurance co. has indicated no interest in assisting with the computer graphics approach or any form of self-employment. It has also recently refused assistance in seeking diagnosis or therapy from the psychologist in Edmonton regarding Asperser’s Syndrome and PTSD.
Presently I am broke, in debt, have sold almost everything I can sell, and spend about $200.00 a month on supplements etc to assist recovery and control the movement disorder.
Because of information from me, a few others with autism or asperser’s characteristics have been able to get away from psychiatric care and recovery, including one local woman who has gone from very disturbed and totally disabled back to finish her professional career.
There is a great deal more to say as well. The main points are however, that these medications are far more dangerous and to identifiable people than they are given credit for. The practitioners that prescribe and administer them are not adequately aware of their dangers, including known and documented ones, which they cannot separate from the illnesses they are supposed to treat, and do not pay adequate attention to the feedback from patients. The “system” does not have a reasonable means of dealing with harm caused by doctors and won’t until it is prepared to admit that harm happens in the first place. The apparent sacrificing of patients that are harmed is atrocious and I tend to describe the whole problem as a human rights issue. The task of assisting the victims falls on lesser qualified (non doctor) therapists that can seem to do a far better job but who may be put in political danger for doing so and can and likely will be overruled by doctors who seem more intent on protectionism than health care. Beyond that I have to suggest that there is little out there in mental health care and supports that seems realistic, or even works.
My future is still in severe doubt even with assists because of the progressive nature of this movement disorder, but I would like a shot at something. A greater issue is the others who obviously are and will be victimized as I was. Simple calculations from known estimates could lead to suggestions of tens of thousands or more going through what I went through right now, in Canada.
I have complained to the Saskatchewan College of Physicians and Surgeons on 2000 without realistic results. I have written reports on this to politicians and Saskatchewan’s Minister of Health, the local Health Region (and have been encouraged by healthcare people to do so) and everybody else I can think of all with similarly useless results, usually not even acknowledgement. Yet it can be seen that the carnage goes on.
Legal opinions I have sought are dismal.
I have come to the conclusion that publicity, hopefully noisy publicity, is the only recourse to finding the others so affected, or letting them find themselves as I did.
In my case I would like to see a fully independent, such as criminal, investigation done.
I hope this can be revealed so it can be dealt with.
July 9, 2004
Summary of prescription medications;
From Pharmacy records March 1995 to termination of psychiatric medication October 1999:
Note: Antidepressants were started in the fall of 1984, with Surmontil, prescribed by a General Practitioner to assist in pain relief from a mid back injury. This medication was continuous until stopped in 1993 or 1994.
Symptoms now understood to be from Serotonin overload were present almost immediately and continuously until all meds refused.
Also prior to 1995 were the medication: Haldol (neuroleptic), Atavin (benzodiazapine), Luvox (antidepressant), Restoril (benzodiazapine for sleep), and at least 2 or 3 SSRI antidepressants, one of which caused what I can only describe as mini convulsions or seizures, of short duration ending with violent vomiting after which the seizures broke.
I don’t have pharmacy records on hand to detail this.
FROM PHARM. RECORDS: names in brackets( ) are either from a Pharmacy resource or from my best recollection. Some medications in my records that were unrelated to Psychiatric care or secondary reactions have been omitted here. Medications prescribed and administered in hospital are not reflected here.
Dates of use typically are from first report in records until last time a prescription was filled, not necessarily the last time taken.
Novo-Doxepin (Sinequan) Tricyclic Antidepressant 50 mg – From: Mar. 29/95 – Aug 10/95 Tried earlier on, until about 1994, one of the least harmful antidepressants, but still not good.
Carbolith (Lithium Carbonate) 150 mg – From: Mar 29/95 – May 13/98 Now known to be associated with depression and a continuous urinary incontinence problem that was denied, that still lingers to a lesser degree.
Apo Diazepam (Valium) 5 mg – From: Mar 23/95 used periodically almost throughout, was used very briefly after termination of Psych. care at time of death of mother in 2000. By itself, similar to other benzodiazepines led to progressive loss of reality and what I call psychotic existence.
Nu – Ranit (ranitidine) 150 mg From a GP – stomach acid reducer (this was a serious problem while on Psych medications) – From: Apr 7/95 – July 15/99
Losec 20 mg (stomach acid controller) Not from a psychiatrist – May 5/95 –
Apo Metoclopramide (maxeran) 10 mg – Antinauseant – had almost constant from mild up to disabling nausea entire time of Psychiatric medication reducing steadily after termination of Psych. care, understand this involved with Serotonin overload. From: June 7/95 – last used sporadically until spring 2001 for nausea, when I discovered it was a leading cause of drug induced Dystonia, though I was always reassured as to it being very safe, after which no antinauseants have been used. This may be part of my present movement disorder.
Apo – Perphenazine 2 mg – 4 mg – Used to control side effects of other drugs – From: Sept 22/95-July 7/97 No specific recall.
Apo – Imipramine 50 mg – Antidepressant From: Sept 22/95 – until Effexor started. Associated with massive symptoms of Serotonin Overload and depression.
Restoril 15 mg – (benzodiazapine sleep med) From: Sept 22/95 – Oct 16/96 No specific recall of effects.
Apo – Oxazepam 15 mg (benzodiazapine Serax) From: Sept 22/95 – Dec 13/95
Alprazolam 0.5 mg (Xanax) From: Jan 23/96 – Oct 8/99
Effexor 37.5 mg – 75 mg (antidepressant) From: June 5/96 – June 23/98 (started in hospital Apr. or May/96) Associated with much deeper depression and anxiety, (SSRI Mania?) plus massive symptoms of serotonin overload, still being the subject of treatments for PTSD.
PMS – Clonazepam 0.5 mg – (benzodiazapine Rivitril) From: June 5/96 – June 18/99 shown independently to rapidly cause the “benzo crazies.”
Nozinan 5 mg – 50 mg From; June 5/96 – July 7/97 Heavy short lived sedation, huge appetite stimulant, loss of reality.
Nu – Loraz 1 mg 2 mg – (Lorazepam – benzodiazapine) From: Nov 25/96 – June 23/98
Nono-Ridazine 25 mg – (Thiaridazine? neuroleptic) From: July 18/97 – Dec 19/97 May have softened the anxiety from the other meds.
Effexor – XR 150 mg – (Antidepressant) May 27/98 tried very briefly, immediately caused strong depression and “going crazy.”
Paxil 20 mg – (antidepressant) From: Aug 7/98 – Aug 20/98 This included a dosage increase and was refused due to suicide attacks (now being more widely discussed internationally. Also caused specific attacks of depression and anxiety.
Novo-Poxide 25 mg – (Librium) Sept.7/98 Single dose taken resulting in severe instant anxiety attack.
Epival 500 mg – Sept 29/98. Associated with severe gastro intestinal distress, disorientation, and loss of reality until refused.
Novo – Chlorpromazine 50 mg – From: Sept 29/98 – Dec 17/98 Massive disorientation, blackouts leading to short periods of total disorientation, activity observed by others as totally bizarre but of which I have little or no recall, until medication refused.
Risperdal 1 mg From: Sept 29/98 – Oct 28/98 – Note: Associated with extreme obsessive compulsive, utter madness, and arthritic attack in several joints including hands, some symptoms of this still exist leading to surgery in one hand and cortisone injection in the other. May be due to Neuroleptic Malignant Syndrome.
Rhovane 7.5 mg (immovane – zopiclone) from Sept 10/98 Note: Am still using this med as a control for the flinch (tardive dyskinesia), it being possibly the only primarily psychoactive pharmaceutical I can tolerate. This drug was forcibly withdrawn cold turkey in hospital in 1999 leading to massive suicidal urge.
Nu-Trimipramine (Surmontil) older tricyclic antidepressant started in 1984 for back pain, caused depression etc., used until replaced in 1994 up to very high dosage. 50 mg – From: Nov 23/98 – Dec 23/98
Dom-Metoprolol-B 50 mg – From: Dec 11/98
Zyprexa 5 mg – 10 mg (Olanzapine – neuroleptic) From: Dec 23/98 – Refused Sept/99 Note: This drug is associated with the start of my flinch (tardive dyskinesia), extreme symptoms often associated with Trauma Response, psychosis, severe dietary problems possibly from pancreatic damage, many present symptoms associated with Post Traumatic Stress Disorder stemming back to here. Only the use (prescribed) of very heavy doses of immovane allowed this medication to be survivable.
Stemetil 5 mg – (anti nauseant) From: Dec 30/98 – Oct 14/99 not used continuously, some effect in treating nausea.
Serzone 100 mg – (antidepressant) From: Jan 29/99 – April 19/99 No recall.
Dixarit 0.025 mg – Feb 2/99 No recall.
Dom-Trazodone 50 mg – (Desyrel – antidepressant) July 23/99 Single prescription associated with high anxiety and massive panic attacks from inconsequential stimuli.
Apo-Amitriptyline 25 mg – (Elavil – antidepressant) From: July 30/99 – Aug 20/99 Similar to other tricyclic antidepressants, big improvement when removed.
Apo-Halopridol 1 mg – (Haldol – neuroleptic) From: Sept 15/99 – Sept 24/99 Utter nightmare, compelled to use in 1993 in hospital, associated with akathisia (severe leg etc discomfort and inability to remain still, sitting etc, walking helped) plus massive obsessive compulsive, depression, disorientation until refused, repeat performance in 1999 until refused.
PMS-Benztropine 2 mg – (Cogentin) From: Sept 15/99 – Sept 24/99 Poor recall other than improvement on refusal.
Apo- Carbamazepine 200 mg – (Tegretol) From: Sept 8/99 – Oct 8/99 plus as follows:
Celexa 20 mg (antidepressant) From: Sept 15/99 – Oct 10/99 Note: This combination of Tegretol and Celexa was the most terrible time of the entire ordeal, with massive symptoms of disabling nausea and sweating, associated with serotonin overload, utter collapse of emotional and cognitive function, overall shutdown of mental capacity in almost every regard, symptoms of which were a very long time reducing after refusal of these drugs, though the turnaround was obvious and immediate upon their refusal.
This marked my total refusal of psychiatric medications.
All benzo diazapines were stopped after last prescription of Valium April 4, 2000, which was used briefly after my mother’s death, except for a 2 day trial of a Benzodiazapine sleeping pill Starnoc, represented as the mildest of mildest which led to a 10 day run of anger and utter psychotic feeling.