David S. Kozin Posted September 15, 2011 Report Share Posted September 15, 2011 (edited) An original of this document was very popular and lost. I believe it is extremely important, and I enjoy writing it. It is a work in progress, so check for updates. I have reviewed hundreds of medical charts, mostly psychiatric including intake notes for an inpatient mental hospital, and I have also read my own. I don't recommend reading your own if you are sensitive, but you do have that right. I was trained to write daily progress notes for patients in an inpatient psychiatric treatment facility. I have written perhaps 1,000 of them. Daily progress notes from a mental health care worker or nurse will be less detailed that the notes from a Psychiatrist; this is especially true in private practice or visiting a specialist who is writing a report to give to your doctor. That being said, I will use examples from my own experience to illustrate my points. Point 1: Dr. Abraham states that his HPPD patients see on average SIX clinicians before they receive the correct diagnosis. You probably have already experienced clinicians who are unfamiliar with Hallucinogen Persisting Perception Disorder. I have had the pleasure of meeting with approximately 15 different doctors, and only one of the them had even heard of the disorder. That doctor's name was Dr. Henry David Abraham. Point 2: Just because your doctor has not heard of HPPD does not mean they will not believe you. Some doctors will research the disorder, and some understand that just because they have not experienced the condition personally does not mean it does not exist. Good News for You: Information about HPPD is travelling because of brave patients and the Internet. No longer is a doctor limited to memory, but if they search for the disorder with Google they will receive accurate information and if they search MEDLINE/PubMed a good deal of easy to read articles by Dr. Lerner in the later years are very blunt about HPPD. MAIN POINT: It is likely that your doctor will not be familiar with HPPD, so you will need to take measures to enable the doctor make an accurate assessment about you and the disorder. We do this by bias, science, avoiding common mistakes, and sometimes going to a different doctor. WHAT TO and NOT TO DO WHEN GOING TO MEET YOUR DOCTOR Do not dress like a Candy Raver. Do not wear Grateful Dead shirts or shirts with any writing at all. Your well meaning shirt cleverly making fun of mullets will distract the doctor and your credibility is already going down. Wear business casual. A polo shirt and dress pants. Do not overdress, but your clothes should not stand out. Why? Because what you wear is noted and will be put in the record. Let me give you an example, "The patient was dressed in a polo shirt and khaki pants. Hair was groomed. The patient appeared his stated age." Compare this to the following note, "The patient was dressed in a t-shirt with visible stains" Your clothes won't help you as much as they can hurt you. If you are a painter and leaving from the job, let the Doctor know that you apologize for the paint on your paints and shirt, but you did not want to risk being late to the appointment to change. If you think the doctor shouldn't care how you dress and you want to be an individual, then see where that thinking gets you. If you are a Hipster with a 4.0 GPA and you are not at Berkley or Reed College Health Center, then bite the bullet and dress like you are from Saved by the Bell. Be clean. The doctor will begin to judge you, as their job, the moment they open the door. If this is a new doctor, give them the benefit they do want to help you and don't begin thinking, "Here is another waste of time," because it will show on your face. You don't have to pretend to be happy when you are not, but be yourself without judgement of the doctor. Remember, you are going to tell the doctor things that are contradictory to traditional practice. First, HPPD is known to be exacerbated by the most common class of antipsychotics. Research case reports from multiple clinicians and most HPPD individuals will tell you that antipsychotics is contraindicated (not to be used for) HPPD. However, if you mention to your doctor that you have hallucinations, the doctor is often going to consider putting you on anti-psychotic. ANTI-PSYCHOTICS will exacerbate your symptoms. HPPD is not a disorder of hallucinations, because we know what we saw are not real. It is a disorder of an altered perception of the visual stimuli we receive. We know there are not five blurring afterimages of street signs that exist and are floating around the real sign, but we see illusionary images. This leads to a major point: WHEN DISCUSSING YOUR SYMPTOMS NEVER MENTION HALLUCATIONS UNLESS YOU BELIEVE WHAT YOU SEE IS REAL. Use phrases to describe your symptoms and be sure to not use the word hallucination. Here are examples, "I see after images, like what everyone sees if they have a spot from a camera flash and it takes a longer time to go away. However, now... everything is like a camera flash." or "I see faces and objects in patters, I know they are not real, it reminds me of when I was a kid and we could see faces in the could... however, now they are very strong and I don't need to look for them but they are always there." Or, "I see visual static, like if a TV was on an off channel and that TV static was projected all over my vision." Remember: You are telling your doctor that you took hallucinogens, which by definition in most countries is against the law. Consequently, you took an illegal drug. So, substance abuse may be a real problem for you. If it is, then this should be dealt with. If you report your use honestly to your doctor you are still going to have at least some reasonable belief by a doctor that you have the potential for substance abuse. So, telling your doctor a phrase like, "No, I can't take antipsychotics like you suggested, like I said, the only drug is Klonopin that works for HPPD," which is not a true statement, your doctor may "hear": "I want you to prescribe me a controlled and abusable substance and I am not willing to try anything else." Klonopin can be used by many individuals safely, but some of us know (just read about it in the Benzo withdrawal area of this web site) that the drug is not perfect. I would print out some research about HPPD out. I am working on a new version of an infosheet out to give to doctors. However, do not overwhelm your doctor with 100 research articles or you may appear that you are too informed, and have done so only to confuse the doctor in paperwork so you can get drugs. Or, you may appear obsessed with the disorder. We are often obsessed with the disorder in the early stages because it has changed our perception and it is hard to escape it. We also tend to be a rather intelligent bunch and have had to do our own research to find out about our disorder. I joke that, "An HPPD patient population is the only group of patients where most members can intelligently discuss basic neurochemistry and pharmacology." It isn't funny that we have had to go to such lengths just to be able to diagnose ourselves, but we do. More to come (still editing) Edited September 16, 2011 by David S. Kozin Update .1.1 Link to comment Share on other sites More sharing options...
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