HPPD

Anxiety and Hallucinogen Persisting Perception Disorder(HPPD), Can You See It?

A special community-led study by subreddit r/HPPD and Sophia Alcala.
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Is there a connection between anxiety and Hallucinogen-persisting perception disorder (HPPD) symptoms? Are there correlations between HPPD symptom clusters with past and current substance use (nicotine, alcohol, psychedelics, etc.)?
Participants
Participants:
Recruiting
Time Commitment
Time Commitment:
A maximum of 20 minutes
Study Type
Study Type:
Observational, naturalistic study
LED BY
r/HPPD
Sophia Alcala
r/HPPD
Sophia Alcala
FUNDED BY
Quantified Citizen
Why We Are Doing This Study

HPPD visual

Reddit community r/HPPD was formed to raise awareness, encourage the study and research of hallucinogen-persisting perception disorder (HPPD), and support and inform those with or without HPPD. This study is the group's first observational study investigating the connection between anxiety and symptoms of HPPD.

HPPD or Hallucinogen (Induced) Persisting Perception Disorder (HIPPD) is an understudied disorder with a complex and unpredictable nature. It has overlapping psychiatric, psychological, and neurological symptoms that have been reported by a subset of people who have taken psychedelics. Most psychedelics are implicated, but some more than others: LSD, psilocybin, ayahuasca, 2-CB, ibogaine, etc., and also related (but not classically psychedelic) drugs like MDMA, cannabis, dextromethorphan (DXM), datura, ketamine, salvia, and diphenhydramine (DPH).

Sufferers report an alteration of everyday perception including conditions like: Visual Snow Syndrome (VSS), migraine with aura, manic episodes, epilepsy, anxiety disorders and brain injuries.

One of the concerns raised by the subreddit's moderator, Sophia Alcala, as observed from discussions within the community, are reports of anxiety by many of its members. This issue informed the research focus of assessing associations between anxiety severity and the severity of HPPD symptoms. 

If you are experiencing or have experienced HPPD then we (r/HPPD, Sophia Alcala and Quantified Citizen) invite you to join this study that may inform future clinical trials and therapies for this condition.

Team

rHPPDr/HPPD

Reddit   

The r/HPPD subreddit is the largest and fastest growing HPPD community to date. This community was formed to raise awareness, encourage the study and research of HPPD, but most importantly support and inform those with or without HPPD.

 

Sophia AlcalaSophia Alcala

LinkedIn   

Sophia Alcala is a 21 year old trans woman, moderator for the subreddit r/HPPD, student of psychology at Southwestern Community College, and facilitator for support groups under SMART Recovery. Her future plans include conducting more research on HPPD and helping those suffering from HPPD.           

 

Maggie Kiraga 

Maggie Kiraga

Director of Research

linkedin    

 

Sarah Paschall                  

Sarah Paschall

Psychedelic Researcher

linkedin             

 

Ahnjili Zhuparris

 

Ahnjili Zuparris

Psychedelic Researcher

linkedin

 



Special thanks to:

Dr. Jim Fadiman

 

Dr. James Fadiman

Personal Site

Consent

Please view the comprehensive privacy policy here.

How will my privacy be protected?
All information obtained during the study will be entirely anonymous.

Who will have access to my data?
Anonymous data will be made accessible to other researchers in the name of open science.

Can I say ‘no’?
You may decline to enter or withdraw from the study at any time without any consequences or explanation.

Who should I contact for further information?
Please do not hesitate to contact our team at studies@quantifiedcitizen.com. If you have concerns about your privacy and wish to ask a question, please create an anonymous email address at proton.me. This service is free, anonymous, and encrypted.

Declaration of Consent
I have read the written study information.
I have been informed that my anonymous study data can be shared in the future with other researchers in the spirit of open science.
I am aware that my participation is voluntary and that I have the right to withdraw my consent and leave the study at any time without having to give a reason. No new data will be collected at this point.
I have been notified that the data that has already been collected will still be used in the study and cannot be deleted as it will have already been anonymized, encrypted, and saved to the servers.
The researcher has had no influence at all on my choice to participate in this study.

Privacy

All information obtained during the study will be entirely anonymous. All digital data collection will be self-administered. You will get a unique, randomly generated username and your identity will remain anonymous. Please write down this username and keep it in a secure location. You will need it to login into the app should you lose your phone as well as to access your individual data summary and aggregated data. If for any reason you no longer have access to your QC account, and you do not remember your username, QC will not be able to regenerate your account.

You will never be asked to provide your real name, address, or date of birth. Averaged group data may be published or publicly presented, but it will not be possible to identify individual participants from this data. The Quantified Citizen app will not have access to any of your personal identifying information. Quantified Citizen will only access IP addresses from server logs for security and quality control and will delete them every 48 hours to limit indirect identifiers. Only authorized QC staff can access server logs based on their role and a need-to-know basis in order to fulfill their duties. IP addresses are not included in the data that will be analyzed in this study.

All of the data you enter into the Quantified Citizen app will be encrypted and stored in perpetuity on servers located in Canada. Anonymous data will be accessible to all researchers involved with this study. The data may be accessible to other researchers in the future. Any data you have previously entered into the app regarding the microdosing study will be used in addition to any data you enter in the future.

Updates

Check back for updates soon!

Resources

This is a free, confidential, 24/7 hotline providing free mental health and substance use support. Their platform offers various services ranging from basic wellness information, to one-on-one sessions with a counselor, to participating in a community of support

These are 24-hour, free, support lines (via text medium) for people experiencing all kinds of crises, including suicidal thoughts. 

This is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. For Spanish (Español), dial 1-888-628-9454.  You can also use the Lifeline Chat on the web https://suicidepreventionlifeline.org/chat

  • Substance Abuse and Mental Health Services Administration National Helpline (USA): Call 800-662-HELP (4357)

This is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental health and/or substance use challenges.

  • Fireside Project (USA): Call or text (3pm to 3am PST) 62-FIRESIDE > 623-473-7433

This is a peer support for those in the midst of psychedelic experiences, those sitting for others, and those integrating past psychedelic experiences. You can also access support via an app: https://firesideproject.org/app

This is an online directory of experienced providers, information about integration groups/circles, and online education in the psychedelic space. 

This organization represents nurses, at all levels of training, who work with patients utilizing therapeutic psychedelic medicines. They offer a list of clinical resources for those seeking integration and harm reduction, as well as psychedelic societies/communities, and professional organizations.

 
FAQs

Who can participate in this study?

Eligibility criteria:

You may participate in this study if you are experiencing or have experienced Hallucinogen (Induced) Persisting Perception Disorder (HPPD), at or above the age of 18, able to give adequate informed consent, with secure access to a personal mobile device.

If you do not meet any of the following criteria, you will not be able to participate in this study:

  • under 18 years of age
  • not fluent in English
  • not able to give adequate informed consent
  • you will need secure access to a personal mobile device (cell phone or tablet) to run the app on.

What am I being asked to do?

You will be asked to fill in 2 custom questionnaires addressing demographic information, medical history, HPPD symptoms, past and current substance use, and more. Additionally, you will be asked to complete 2 validated surveys: General Anxiety Disorder survey and Dissociative Experiences Scale. You will be asked to complete these assessments only once. The full study completion should take about 18 minutes (67 questions in total). 

What are the risks of participating?

Participating in this study does not make using these substances legal. There is some risk relating to admitting to using illegal substances. If you are choosing to use psychedelics (or other illegal substances), you are already familiar with the practice and would be doing so regardless of your participation in this study.

All of the data you enter into the Quantified Citizen app will be encrypted and stored in perpetuity on servers located in Canada. Anonymous data will be accessible to all researchers involved with this study. The data may be accessible to other researchers in the future. 

Can I say “no”?

Your participation in this study is strictly voluntary. You may decline to enter or withdraw from the study at any time without any consequences or explanation. No new data will be collected. Data that has already been collected will still be used in the study and cannot be deleted because it will already be anonymized and encrypted.