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Lobotomizer

Does a HPPD intensity scale exist on these boards???

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Im interested because of these subjective experiences. It would be helpful and intriguing to see a poll/survey or a rating scale regarding how bad symptoms are. I.e., Minor visual snow to full blown peak LSD trip. I have never met anyone that was immersed in a "full trip" for longer than the acute influence of the substance and if you are experiencing this I would love to hear from you. I may be able to share with you some suggestions that helped me with in my experience. Most of these disturbances seem to be a result of trauma and anxiety and when the anxiety subsides the visual disturbances either A) seem to bother us less or B .don't exist.

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Thank you sir. Mine would be difficult to guage because now I only experience some visual snow. But for many years I had it pretty bad.

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This survey has so many holes in it and problems that I wouldn't want to be a part of it. Plus I have never seen a "professional" about my case. Thank you though

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Dear Lobotomizer,

 

I just saw your comment and emailed you privately to try to reach you to find out the problems and holes that you see in my survey.  I appreciate any feedback/help to make this process work, so please contact me.  Thank you so much!

Doreen M. Lewis, PhD

www.facesofhppd.com 

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The closest way I can describe the symptoms I suffer is that it is like being trapped in those final comedown hours of a strong trip where you are still having some visuals and trippy thoughts, but the wonder has gone and you are somewhere between normal and tripping.

 

If I were to put a rate of the level I think my hppd is at, i'd say 8/10. The first 3 years, i'd put it at 9/10

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facesofhppd.com; First of all, what do you mean by "narcotics" in the survey? You ask specifically about marijuana and benzodiazepines AND about narcotics separately. Do you mean analgesics? Or do you just mean "narcotics (not cannabis or benzos)"?

In the "Did You See a <medical professional> for HPPD?" questions, you can choose between "No", "Yes - diagnosed me" or "Yes - Treated Me". That's a pretty limited selection! The first neurologist I saw neither diagnosed OR treated me. He just dismissed me, essentially.

Also, I see that it is only possible to enter US address information - are you really sure that the experiences of, say, a European HPPD sufferer is of no use to you? :)

 

You define depersonalization as "Feeling like You're Still Tripping" - I'm not sure this definition makes sense? I've tripped many, many times, generally without feeling "depersonalized" even while tripping. From reading the description on wikipedia, the two feelings sound distinct if perhaps not disjunct. Oh, and why is derealization not on your list of (comorbid) symptoms?

I've tried filling out the questionnaire, but there were simply too many things I couldn't answer sensibly because of the way the questionnaire was designed. I would love to try again once any changes are made.

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This is in reply to StateofRegret.  First, THANK YOU for the helpful comments!  This is exactly the kind of feedback that helps.  In any survey study, there are "limitations" and these such limitations can be discussed in the results of the final report.  I appreciate the areas of the survey you have questioned, some of which we are able to correct without compromising the integrity of data already collected.  To answer your question about drug categories:   In the design of the survey, it was considered how to present drug "names" (for example: should the survey reference drug "street names" for those who may not know the formal category?  And, could such a list be created that is exhaustive? We didn't think so... ) It was decided to use formal psychiatric drug categories (each category is intended as a stand-alone).  The drug "categories" list was provided to me as a standard list that is used in psychiatric settings and was used in previous research.  I am not a psychiatrist or physician and am relying on professional consult/assistance for such information; that said, I will verify the use of the term "narcotics" to see if "analgesic" is a more proper term to add as a description to that checkbox field.  The "Did You See a <medical professional> for HPPD?" questions were reduced to YES/NO response, simply.  And, StateofRegret, I thank you for advising me that the address collection fields did not include space for "country" and "province," which now does. Yes, we want to include ALL participants who are HPPD diagnosed.

 

Also, just as a matter of clarification, there are two parts to this study:  one, is a quantitative data collection survey (the research part), which will be statistically summarized in a report.  It is hoped this will contribute to the literature! The second part is case study/interviews of HPPD patient stories that is being collected.  Participants may submit their stories in writing or participate in a telephone interview.  Each story will be written up and returned to the participant to review for its accuracy, edit, and provide approval.

 

If anyone has questions, please feel free to contact me!  

Thanks!
 

 

Doreen M. Lewis, PhD

Email: info@facesofhppd.com

Website: www.facesofhppd.com 

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If anyone has questions, please feel free to contact me!  

Thanks!

Hi Doreen,

I was just wondering: is there a deadline for the survey?

Thank you,

Odisa

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facesofhppd.com; First of all, what do you mean by "narcotics" in the survey? You ask specifically about marijuana and benzodiazepines AND about narcotics separately. Do you mean analgesics? Or do you just mean "narcotics (not cannabis or benzos)"?
In the "Did You See a <medical professional> for HPPD?" questions, you can choose between "No", "Yes - diagnosed me" or "Yes - Treated Me". That's a pretty limited selection! The first neurologist I saw neither diagnosed OR treated me. He just dismissed me, essentially.
Also, I see that it is only possible to enter US address information - are you really sure that the experiences of, say, a European HPPD sufferer is of no use to you? :)
 
You define depersonalization as "Feeling like You're Still Tripping" - I'm not sure this definition makes sense? I've tripped many, many times, generally without feeling "depersonalized" even while tripping. From reading the description on wikipedia, the two feelings sound distinct if perhaps not disjunct. Oh, and why is derealization not on your list of (comorbid) symptoms?
I've tried filling out the questionnaire, but there were simply too many things I couldn't answer sensibly because of the way the questionnaire was designed. I would love to try again once any changes are made.
 
THIS^
 
 

 

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