Tips for Meeting and Discussing HPPD with your Doctor - in process

[David S. Kozin]

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.
  
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• More to come
  

(still editing)

Edited September 16, 2011 by David S. Kozin
Update .1.1

[David S. Kozin]

updated above with more...

[Merkan]

An infosheet would be SO helpful. When i walk into that room i instantly submit and have problems with knowing where to start talking about HPPD. The symptoms are easy to describe but i always start going with theories that me myself do not understand.

[David S. Kozin]

I am working on one now using the beautiful typesetting language of Tex. Turn it into a PDF for download.

Suggestions for Sections?

I think:

Quick bold definition of HPPD as should be written. Citations. Bullet points of treatment and HPPD facts. Then link to the portal web site underdevelopment for a comprehensive database of info.

Translators would be useful. Any volunteers?

- dk

[Merkan]

Of course i would translate it in to Swedish. Though i have enough English in me to do it on my own, i would use some people in the language section of the faculty as well as online tools to make it absolutely right.

[David S. Kozin]

I found the original. I will provide it unedited and this was a view made long ago. I have a new view now, but I ran into it on a serendipitous search looking for images for my "Introduction".

Posted: Sun Mar 02, 2003 10:55 am Post subject: How to approach the Doctor, and choose one. How to approach a doctor about HPPD

Choosing a Doctor (i'm calling the dr. him, but him can be a she too i know)

If you are looking to receive medication treatment for your HPPD symptoms, you will need to see a psychiatrist or a nurse practictioner who works in the psychology field. Remember, not all Dr.s are the same. Often, you get what you pay for. You can shop around (if you have insurance) and find the one you like; you are a customer and they are trying to sell themselves to you! It is best to find a Dr with experience in neuroscience, instead of one that concentrates in behavioral therapy. Also seeing Drug Abuse conselors may not be helpful at times (this is a general statement, many can be good for you, particularily if you have a drug abuse problem). However, the "neuroscientist" type of psychiatrist will understand your HPPD symptoms and will likely understand what a qEEG is. If you mention to your therapist, "I have HPPD, I think it is because of my past use of a-MT, 5-MeO-DiPT and these caused some sort of changes in my brain, perhaps poor disinhibition of intercortical neurons," and they can't follow a word you are saying, maybe you should shop around. I have had one doctor tell me that "Ecstasy burns the brain." He took out a sheet that NIDA had produced and read me facts. I told him, "Do you mean oxidative stress?" I continued to go on about Dopamine eventually being involved and at that point the Dr - patient relationship got switched and I never returned. Actually. I should note this was a "drug conselor." Of course, not all of you are smart asses like me. (i think i can use the word ass here, because if some kid has spent the time to read past the intercortical stuff, the kid knows the word ass)

How not to look like a drug addict

On your first visit, don't start off by saying, "I have HPPD and I want Klonpopin for it because that is a drug that helps I read is the best treatment." Remember, having HPPD comes with some baggage that already puts you in the hole with the Doctor:

1. You admit to using illegal drugs

2. You have a disorder that most likely you can't prove (unless you have a qEEG)

3. Your doctor probably doesn't know what it is.

4. You probably are so overprepared with information you look like you have made it up and rehearsed it just to get drugs.

One statement that worked for me, but I don't really recommend it, was when I asked for Klonopin, I also said, "If you think I am trying to use you to get drugs, i could pull out a list of names that i could call to get me this same substance, mexican brand, cheaper and I can buy any drug I want on the market. I'm not going to go through this entire hassle to get Klonopin." This was a fun-loving doctor so I got away with it. Your doctor may not be so fun-loving.

What should you do?

You should see if the doctor has heard of the disorder. Make sure you tell them that you don't have Flashbacks, but that (if it is true) you have visual disturbances 24 hours a day for the last X many months/years.

A GREAT HINT IS TO NEVER USE THE WORD HALLUCINATION, ALWAYS REFER TO THEM AS "VISUAL DISTURBANCES"

This will help prevent them from taking you down the schizophrenic diagnosis track. Another good phrase to use if they start going down this path is tell them, "Doctor, my reality testing is fine. I have no delusions, blah blah I just have persistant visual disturbances, kind of like the ones you get before migraines, but multiplied by 1000"

Also, make sure that they know it is in the DSM-IV, just in case they claim it doesn't exist. You will eventually come up with the time you may mention you want to try a medication for it. It is likely they don't know what to prescribe. The first thing they may want to prescribe is an anti-psychotic. These are NOT good for your visuals if you have HPPD. Gently tell the doctor that anti-psychotics are contraindicated for use in treating HPPD. You can show him the articles (there are a few about risperdal on the literature section of the site) that say these types of drugs make symptoms worse.

Next, tell her that you have read the Klonopin helps with the symptoms. But, know that Klonopin is not a perfect solution. You don't want to be on Klonopin for the rest of your life (in my opinion) and tell them this. You want to be on the lowest dose that works and you don't want it to be a permanent solution. .5mg a day is fine. 1mg a day is fine. going beyond that starts having greater side effects. I was on 3mg a day at one time. I don't remember that year. Seriously.

Make sure that you let them know that you plan on coming back to them, not just for Klonopin, but for therapy to help you deal with the other symptoms that come along with HPPD. This will let your doctor know you are not just in for a free script for an addictive drug.

Here is a good article about one doctor's way of understanding his patient's HPPD: It is reprinted with permission:

The Permanent Trip: A case of "post-hallucinogen perception disorder"

by Paul Genova, M.D.

(Adapted from author, The Thaw: 24 Essays in Psychotherapy; Pittsburgh: Dorrance Publishing Co., 2000, pp. 17-19.)

[introductory note] Here is a situation where an experiential risk paid off. I have never seen the visual world in quite the same way since. One could say that the intervention here was primarily cognitive -- and I'm no snob about that -- but I would argue that it was equally important that I joined the patient in his isolated perceptual world as a companion.

"Trip" first came out in the Winter 1995 issue of Voices; it was reprinted, with a commentary by the biological psychiatrist Ronald Pies, in April 1998's Psychiatric Times, subtitled with the new nomenclature for the problem: "Hallucinogen Persisting Perception Disorder." Pies' scientific observations were greatly appreciated, but seemed too specialized to include in this version.

Dan, 21, was home from college in the middle of the winter, having dropped out after a miserable year and a half. His problems had begun about three years before, shortly after period of drug experimentation which had included three LSD trips. A few weeks after his final trip, newly abroad as an exchange student, he began experiencing spontaneous visual hallucinations including moving "dots" in the visual field, afterimages or "blurs" of moving objects, a sense of being able to "see the air," and other phenomena described by Abraham in 1983 (see also DSM-IV, pp.233-4) as "post-hallucinogen perception disorder." Neither his hosts nor the European physicians he eventually saw had any clue about what was wrong, and Dan sensed that they were beginning to think he was a hypochondriac, so he stopped complaining and endured this problem on his own for a year, fearing for his sanity. Not until he started college back in the U.S. did he find his way to a neurologist and eventually to Abraham himself, who made the definitive diagnosis and found "persistent activation of the right posterior temporal area" after visual evoked response testing. [The electrical activity in the brain's visual cortex, generated in response to a test stimulus, did not die away within the expected amount of time, but kept on going for much longer.]

The symptoms were managed with clonazepam [trade name Klonopin, a potent relative of the familiar Valium] on the theory that their neurologic basis might resemble siezure activity. Dan seemed to require high and ever-increasing dosages, and became withdrawn and depressed. He stopped functioning in school and socially, drank alcohol more heavily, and, when he realized what was happening to him, finally decided to come home.

My suspicion, when I began working with Dan, was that the clonazepam was a major contributor to his depression. But my initial efforts to taper the dose, while working in conventional psychotherapy on developmental issues behind his sense of being punished by his perceptual affliction, met with resistance and a florid worsening of the visual symptoms. Then, four months into the work, came the session when I spontaneously sat next to him on the couch, looking out the office window at a clear blue sky, and asked him to describe what he saw. As he began I tried to "suspend" my habitual state of consciousness and see whether any of his "hallucinations" were visible to me.

To my surprise, I was immediately able to see irregular linear shapes floating slowly across the visual field. When I blinked, they would change shape or position. I began describing this to Dan in great detail so that he would have no doubt that I was not simply repeating his descriptions, but actually having my own similar experiences. Clearly, these "shooters" seemed to be generated by something on the surface of the eye to which we don't normally attend. I invite the reader to try this for him- or herself.

In this and a few succeeding sessions I was able to experience with Dan most of the phenomena of his illness, including visual "trails" of moving objects, various line-shape illusions such as level bookshelves slanting, "aeropsia" (a sense of bright whiteness in the air between us and observed objects), and "dancing bright spots" originating between the letters and words on a printed page. With minimal information from him, I could describe these convincingly, at times even completing his sentences. We both found this a strangely exhilarating activity. It was clear to me, however, that I did not experience these visual phenomena as intensely and persistently as did he, and that I could ignore them at will.

Whatever the physiological mechanism of this disorder may be, it is obvious that functionally a failure of a normal pre-conscious "editing" process was occurring, whereby additional irrelevant aspects of raw perceptual experience were reaching consciousness.

Dan reported a great sense of relief and "normalization" as a result of these few sessions. Tapering of his clonazepam was now accomplished with relative ease down to a very minimal dosage. Predictably, the major depressive symptoms resolved. There was much else to talk about in a year of therapy, but we both agreed, and still agree several years later, that our perceptual experiment was the turning point.

Before our mutual experiences, the symptoms "meant" that Dan was crazy, different from other people, alone forever in a distorted visual universe. This triggered a vicious cycle, or "positive feedback loop," in which Dan's anxiety about this situation served to amplify the symptoms in his conscious awareness and continually re-focus his attention upon them. Thus the ordinary distractions of everyday experience were unable to perform their potentially useful role, powerless to divert him from an "illness" which became the center of his life and, expectably, a crystal nidus for fantasies of punishment which sprang from their usual developmental lairs. He was quite capable of understanding the sources of this hitherto-latent shame, but this did not impact his perceptual distortions one whit.

After the "normalization," though, Dan had only the symptoms themselves with which to contend, and not the snowballing anxiety and sense of retribution. He became more distractible in the healthy sense, his conscious attention freer to roam, or focus elsewhere (studies, relationships). And through the experience (and perhaps, I'll allow, as a result of our developmental work as well-- sudden "miracles" usually have some amount of groundwork preceding them) he had found his way to a more thoroughgoing self-acceptance.

Dan returned to a different college, did very well, and got his degree.He now works in the mental health field. For the past seven years the same low dose of clonazepam has been necessary, but with it, except in times of extreme stress or physical fatigue, he is rarely bothered by visual symptoms.

[David S. Kozin]

Actually, after reading that rather candid post I think it fits well.