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An e-mail I've sent the psychiatrist who was reluctant to acknowledge/treat my HPPD


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I mentioned in a pretty heated post to the progress-thread I keep in the main forum the fairly poor, typical psychiatrist appointment I had on Tuesday. After gathering my thoughts I composed a pretty lengthy email and sent it his way, and though it's pretty specific to my situation there's definitely enough in it that I feel like it could well be of use to others who've had lukewarm experiences with specialists.

 

 

 

Apologies for e-mailing you at length as I know you’re incredibly busy but I’d hugely appreciate if you would hear me out. As you’re aware I’m disappointed with the current outcome of my recent sessions with you and so I’d be grateful if you could reassess your thoughts on a few things. Forgive me for being persistent but I’m sure you appreciate how desperately I wish to right my current situation. I’d be glad to book an appointment if this email is too lengthy for you to consider on your time.

 

As you’re aware the primary reason I consulted you are my difficulties with the perceptual and cognitive disturbances I believe I developed from use of the psychedelic drugs LSD and MDMA. In describing this I specifically mentioned the well-documented but relatively rare Hallucinogen Persisting Perception Disorder, or HPPD, which through extensive research I believe seems to most adequately describe the particular set of psychiatric symptoms I have, particularly given its association with LSD use and my experience with having first developed these sensory issues, which greatly resemble the sensations experienced during my LSD intoxication, soon after using the drug. Nevertheless as I’m obviously not qualified in psychiatry, am myself the person affected by these issues, and have gained all my knowledge in this area through personal experience and research via the Internet, I regard this as nothing more than an uncorroborated hunch, albeit one that I’ve thoroughly researched and done my best to consider open-mindedly and objectively.

 

You expressed your unfamiliarity with the disorder and that your primary concern as a psychiatrist is that I may be experiencing a prodrome, preceding psychosis. This is undoubtedly a valid concern given that quite a number of the issues I’ve described are associated with the prepsychotic state, I am in a high-risk age group for psychosis development, and my mother displays numerous psychotic symptoms.

However, the ambiguity of psychiatric illness makes this a frustrating situation, given that many of the symptoms of prodrome are associated with other diseases. Additionally, as far as I’m able to gather, preventative treatment is an uncertain area, and the most beneficial approach is indeed high-dose omega-3 oil supplementation, which from your recommendation I am currently doing. Otherwise it seems ambiguous as to what else could be done here aside from your suggestion of an experimental trial of the anti-psychotic Abilify, which I’ve expressed my opposition to due to the sheer potency and potential side-effects of such drugs. So it’d seem treatment in this regard has come to something of a dead end, save for time and general good health and so forth.

 

Unfortunately this leaves me still greatly impaired by the various perceptual and cognitive issues I’m experiencing, which with no hyperbole I described as a “10” on your scale of their impact on my ability to live the life I’d be living otherwise. I have experienced them, with progressing severity, for over a year now, and as confidently as I am able to I’d say they’ve been greatly responsible for my difficulties with pursuing education and employment, engaging with past interests and hobbies, social interaction and withdrawal, and family relationships. Not to mention the obvious great difficulty of just “living” when grappling with these perpetual mental issues daily.

So I’d really like to return to the topic of Hallucinogen Persisting Perception Disorder and my possibly having it. Just to re-iterate, HPPD has been discussed and subjected to peer-reviewed scientific study, and is acknowledged in both the WHO’s ICD-10 and the APA’s DSM-IV:

 

 

 

The following is the (somewhat brief) ICD-10 entry detailing the disorder (my emphasis and bracket-enclosed comment):

 

Excerpt from the ICD-10, 2010, chapter V section (F10-F19) - 

 

Residual and late-onset psychotic disorder

A disorder in which alcohol- or psychoactive substance-induced changes of cognition, affect, personality, or behaviour persist beyond the period during which a direct psychoactive substance-related effect might reasonably be assumed to be operating. Onset of the disorder should be directly related to the use of the psychoactive substance. Cases in which initial onset of the state occurs later than episode(s) of such substance use should be coded here only where clear and strong evidence is available to attribute the state to the residual effect of the psychoactive substance. Flashbacks may be distinguished from psychotic state partly by their episodic nature, frequently of very short duration, and by their duplication of previous alcohol- or other psychoactive substance-related experiences.

Alcoholic dementia NOS

Chronic alcoholic brain syndrome

Dementia and other milder forms of persisting impairment of cognitive functions

Flashbacks

Late-onset psychoactive substance-induced psychotic disorder

Posthallucinogen perception disorder [note: alternative name for hallucinogen persisting perception disorder]

Residual:

  • affective disorder
  • disorder of personality and behaviour

Excl.:

alcohol- or psychoactive substance-induced:

 

And below the more-detailed excerpt from the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders

 

 

Excerpt from the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, published 2000), p232-233:

292.89 Hallucinogen Persisting Perception Disorder (Flashbacks)

The essential feature of Hallucinogen Persisting Perception Disorder (Flashbacks) is the transient recurrence of disturbances in perception that are reminiscent of those experienced during one or more earlier Hallucinogen Intoxications. The person must have had no recent Hallucinogen Intoxication and must show no current drug toxicity (Criterion A). This re-experiencing of perceptual symptoms causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (Criterion B). The symptoms are not due to a general medical condition (e.g., anatomical lesions and infections of the brain or visual epilepsies) and are not better accounted for by another mental disorder (e.g., delirium, dementia, or Schizophrenia) or by hypnopompic hallucinations (Criterion C). The perceptual disturbances may include geometric forms, peripheral-field images, flashes of color, intensified colors, trailing images (images left suspended in the path of a moving object as seen in stroboscopic photography), perceptions of entire objects, afterimages (a same-colored or complementary-colored "shadow" of an object remaining after the removal of the object), halos around objects, macropsia, and micropsia. The abnormal perceptions that are associated with Hallucinogen Persisting Perception Disorder occur episodically and may be self-induced (e.g., by thinking about them) or triggered by entry into a dark environment, various drugs, anxiety or fatigue, or other stressors. The episodes may abate after several months, but many persons report persisting episodes for 5 years or longer. Reality testing remains intact (i.e., the person realizes that the perception is a drug effect and does not represent external reality). In contrast, if the person has a delusional interpretation concerning the etiology of the perceptual disturbance, the appropriate diagnosis would be Psychotic Disorder Not Otherwise Specified.

Diagnostic criteria for 292.89 Hallucinogen Persisting Perception Disorder (Flashbacks):

A. The re-experiencing, following cessation of use of a hallucinogen, of one or more of the perceptual symptoms that were experienced while intoxicated with the hallucinogen (e.g., geometric hallucinations, false perceptions of movement in the peripheral visual fields, flashes of colors, intensified colors, trails of images of moving objects, positive afterimages, halos around objects, macropsia, and micropsia.

B. The symptoms in Criterion A cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

C. The symptoms are not due to a general medical condition (e.g., anatomical lesions and infections of the brain, visual epilepsies) and are not better accounted for another mental disorder (e.g., delirium, dementia, Schizophrenia) or hypnopompic hallucinations.

 

Finally, here is a link to a relevant section on the website of the Massachusetts, USA-based psychiatrist Dr Henry David Abraham, who has done a great amount of research on the disorder and is thus recognised as an expert in the area:

 

http://amrglobal.powweb.com/category/hppd

 

And finally, a link to the scientific search engine Scirus with results isolated from scientific journal sources pertaining to HPPD:

http://www.scirus.com/srsapp/search?q=hallucinogen+persisting+perception+disorder&t=all&drill=yes&sort=0&p=0&nds=jnl

I wholeheartedly attest to experiencing a great deal of the visual disturbances described in the DSM-IV entry and to having developed them only after using LSD, with a considerable exacerbation of them with my later use of MDMA. Additionally I suffer from the numerous issues with perception and cognition which are extensively anecdotally documented to be experienced alongside HPPD-related visual disturbances which I also only began to experience after my psychedelic use, though many of which are also a concern in the potential of prodromal psychosis. Nevertheless, that they are commonly associated with the post-hallucinogenic visual disturbances I’m experiencing is significant. The most troubling of these are the dissociative issues, depersonalisation and derealisation.

 

Thus, it seems only logical to acknowledge that, though very uncommon, HPPD is a very real disorder that has been recognised and documented quite extensively by the scientific and psychiatric communities despite its rarity, and given how my experiences with perceptual and cognitive issues greatly mirror those used to identify the disorder I feel it a great injustice for it to not be given serious consideration in my treatment – particularly so given that the treatments that have been most successful in HPPD have, from my research, been very different from those employed in treating psychosis/pre-psychosis.

 

However, as I described to you during our first visit, I fear due to most psychiatrists inevitably being unfamiliar with the disorder given its rarity, and subsequent uncertainty of appropriate treatment pathways, it’s highly likely that it will not be given the due consideration that it logically deserves. You said you were uncertain of whether I could be experiencing it or not and thus weren’t comfortable treating it and were more comfortable pursuing treatment more typical of psychosis, but who is going to be familiar enough with the disorder to consider it and treat it? It seems highly unlikely that any specialist I see is going to have any familiarity with the disorder.

 

I stated my fear of being sent to numerous different specialists all of whom would be equally uncertain about my particular case during our first session and you said that there was a lot more flexibility in the profession than that, but unfortunately with your recommending a second opinion it seems like that is indeed the reality I face. How many second opinions will I have to get until, by what it seems would have to be a stroke of luck, one is willing to thoroughly and seriously consider my, I believe, very rational concerns about HPPD?

 

I really don’t mean to be rude, presumptuous, or burdensome, so I hope I haven’t come across that way. However, it has taken me a great deal of effort to get this far in the treatment process, and the prospect that it may take quite a bit longer to experience any relief is a very frightening one. My situation is as you’re aware a very unpleasant one and has caused a great deal of tension in my home/family situation, and it’s difficult to consider making great investments of time, money and emotional energy in a pursuit that could be indefinitely fruitless.

 

Finally I’d like to mention that though I provided documentation relating specifically to Keppra/levetiracetam as a potential treatment for possible HPPD that was only from extensive research which showed it to be on-the-whole the most efficacious and sustainable treatment. Other medications which are to my knowledge prescribed with relative degrees of success are clonazepam, clonidine, Sinemet, and Lamotrigine. I’m not sure if that’s useful information for you to have, and it goes without saying that my knowledge of these is very basic and, again, I don’t want to imply any irrational and uninformed self-diagnosis/prescription.

 

Thanks so much for your time and consideration.

 

Kind regards

 

Naturally I don't mean for this to be a stencil for someone to alter as that would be dishonest, just as a general reference. There's probably more I could've added to support my case and indeed stuff I could've left out. I'd've included the summary of the keppra study if I hadn't already given him a copy during our first session, so that's obviously a wise thing to get to anyone you're trying to convince to prescribe you it.

 

Hopefully this is of use, or at least of interest, to somebody!

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wow its Big.. great effort... i did not quite get through the whole thing..  tho you are sure to find someone with experience  with HPPD. 

 

Dr David Bertram Pty Ltd
oren_btn_r.png
258 CARRINGTON ST  
ADELAIDE
South Australia 5000 Australia.
Ph: +61.882235430
 
If you could get in touch with him.. he has experience with HPPD.. Although he is not in Sydney, If you call and explain your situation im sure he will be able to refer you to a colluege in Sydney with HPPD awarness / experience..
 
 
Possibly worth  go ..
Wish u all the best
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Yeah, as anyone who's read a post of mine brevity isn't my strong suit, haha. I really hope he's willing to at least glance over all of it though, I did my best to minimise redundancy and babble, there's just a lot to cover.

 

Thanks kindly for the recommendation. I'll try to get in touch with him next week sometime, unless something happens with this current psych.

 

Same to you man.

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