Zyprexa, Risperidol, Seroquel, and other atypical antipsychotics work for the majority of patients who hear auditory voices or hallucinations, but for 25-30% of psychiatric survivors they do not prevent or eliminate them. I have had treatment-resistant auditory hallucinations -- voices which order me to cut or kill myself -- since I was 14 and I am 53 now. Consequently, I searched the Internet for a clinical trial that used repetitive transcranial magnetic stimulation or rtms which is an experimental treatment for voices.
I found out that Dr. Ralph Hoffman at Yale University was doing this kind of research and started corresponding with him. Soon, I was interviewed by phone and I met the criteria for the rtms study. I flew down to New Haven, Connecticut in February of 2008 and was met by a special Yale driver. He drove me to The Connecticut Mental Health Facility and I was placed in a locked ward. I cried because I was in a foreign country and I didn’t know what was going to happen to me.
As soon as I unpacked there was a whole army of doctors, lab technicians, psychologists, psychiatrists, etc. went over me with a fine tooth comb. I was even tested for tuberculosis. That night I met Dr. Hoffman who was a tall, middle aged man and he wanted my word that I wouldn’t harm myself during my stay in the hospital. The clinical trial would have been stopped if I cut myself. I promised Dr. Hoffman that I would do my best not to self- harm and I kept that promise.
The next few days were a blur of seeing professionals, getting used to the other patients, and coping with caffeine withdrawal. In the hospital caffeine and chocolate were banned because they said it would harm the research results. I kept falling asleep all the time because I am a heavy coffee drinker.
In a day or so I was let out of the hospital into the city of New Haven for four hours and I sneaked across the street to the children’s hospital where there was a coffee shop. I allowed myself one coffee a day and Dr. Hoffman said that it was alright with him.
The meals at the hospital for the most part were quite bad, except for the fruit salad. I was given a plate of bare spaghetti without meat balls or sauce and the meatloaf made me ill for a week. However, the main perk at the hospital was the free long distance phone calls which were paid for by the state of Connecticut. I called my husband, my friends, and relatives frequently and it didn’t cost me a cent.
My first rtms treatment was to start few days after I arrived and before I could have the treatment I was put through an hour and a half long MRI. The technician told me to keep completely still and a cage was put over my head. I started to panic because of the feeling of claustrophobia that was rising in me, but realized that I had to calm down and visualized myself at the beach. The MRI made a lot of loud noises and I became afraid that I would be rendered deaf. Finally, it was over and the technician said that the image of my brain was crystal clear. Next, I had brain mapping session done by a neurosurgeon.
Finally, the day I was to have the rtms done came and I was taken to a small room and had my head marked with permanent marker. The rtms machine was placed on my head and it felt like a rubber hammer pounding on my skull. There were five days of rtms on the right side of my head and five on the left. A professional asked me details of the voices and charted them. When I had rtms on the right side of my brain it seemed like the voices were vacuumed out, however, when the left side of my brain was treated it made the voices dramatically worse. I was not told whether I received the real treatment or a placebo until the rtms was finished.
After three weeks of rtms, the study was unveiled and I was told that I had received the real treatment. Dr. Hoffman reported that of the hundreds of patients that he had worked on I showed the most dramatic difference between having rtms on the left and right sides of the brain. He told me that if he had twenty more patients like me his rtms study would be concluded.
I could have received more rtms on the right side of my brain if I wanted to, but I was getting sick of the weekly shake downs and the strict rules in the hospital. In the end I just wanted to go home as quickly as I could. Upon reflection, I regret that I didn’t get more rtms, since I got complete relief from the voices when the rtms was done on the right side of my brain.
The relief lasted for two months and then the voices came back as terrifying as ever. There is possibility that I can go back to Yale and get more rtms, but the protocol now will be bilateral – rtms on both sides of the brain. I have no idea what that will do to the voices, since stimulating the left side of my brain produced an increase in voices. It could rid me of the voices forever, or it could make them worse.
In my experience rtms has great potential for helping those who suffer from hearing voices and approximately 75% of patients get relief from it. I hope that it will soon be paid for by Medicare and available to the average mental health consumer. Right now there are some private companies in Vancouver and Toronto that give rtms treatments, however they charge $8,000 and very few people can afford that. I just hope that my participation in the rtms at Yale will help goverments make rtms available to those who suffer the agony of hearing voices.
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