Spartan

Well if people have a specific interest I can put in touch with leading Professor running the study. He can / has the power to approve sharing of confidential information. As a patient I am bound to confidentiality. Any interested parties, reach out in a DM if you would like to persue further. Also an Fmri for one or two people would not be effective, it needs to be done for a group of people say 25 to 50 hppd patients for comparisons to be made..to make make the study effective / successful in finding the etiology. In this way many of us are in a diligent pursuit over many years in an effort to raise large amounts of money to make this study / research happen asap.

This is awesome and fascinating.. I know the FMRI will be included in the Maquarie university HPPD study / Protocol I initiated this process approximately 8 years ago when meeting Top Nero Psychiatrists in Australia. Hallucinogen Persisting Perception Disorder (HPPD) Protocol: Multimodal Neuroimaging to uncover neurobiological pathogenesis — Macquarie University (mq.edu.au Would love to share more on the study and protocol tho its confidential. I suspect, one hypothesis for the etiology is that... part of the brain effected is the occipital lobe, or seizure activity taking place within the occipital lobe. It would be great / I will suggest to the Doctors and Professors to include SPECT also. Very cool, thanks for the share !

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@Jay1 that is awesome thankyou I really appreciate it.. most def will keep fighting on.. @cosmiccharliethankyou . Sure why not.. can do a what's app.. Will send you a PM Thankyou and Take Care Everyone!

thank you @Kaleidoscope I really appreciate that.. @MentholFlavoring thanks too man!

thanks everyone, have just been in a traumatic situation "cannot share exactly" that has really made things alot worse.. has been the darkest time in my entire life im concerned about my klonopin usage now risen to aprox 2.5 mgs / day to assist in coping etc the trauma of the situation has given me quite bad depression / isolation / suicidal idealization etc. I even spent time with "acute care team" in hospital explaining the ordeal and symptomologies etc as was not coping.

Hello Hope all are well ! Is HPPD a form of brain damage or brain injury.. Thankyou

gold coast Australia time

im here to talk if you would like. take care of yourself.

try to be kind to yourself, do things you enjoy, think that its just a "bad phase" tho it will pass and become more manageable. stay strong.

Possibly take some klonopin sparingly to take the edge off, it may help, seek a good neuro psychologist.. (consistent appointments) when you are feeling that way reach out for telephone support i.e. life line or acute care team. Its important. They will create a safety support network for you, i.e. people to visit your home and offer additional support and resources to help you through and manage,

I hope you are ok.. ive had a very traumatic past 2 weeks... exacerbating all symptoms massively tho already super bad before also feeling suicidal.. after 3 decades of hppd beyond comprehension and recent events.. honestly contemplating if i want to be here any more.

Hello Fellow HPPD sufferers and Endures

For the three decades I have had severe HPPD have mostly managed medication free. This year i have gone more heavily into the Psycopharm route Currently taking 200 mgs of Lamotragine Daily (docter has suggested to keep raising dose) Have noticed some significant side effects tho also noting some differences mainly with mood and functioning. also taking Klonopin, usually in the evenings. anywhere from 0.5 to 1.5 Hope everyone is doing well Really hope we can unravel this indescribable "disorder" sometime soon, get some long awaited answers and hopefully an effective treatment. / cure. Remember we are beyond strong to endure such an affliction for such an extended period of time. Peace.

ridiculous totally disagree

agreed keen to give it a whirl ... tho should i be concerned as its anti-psychotic ? some people say that they increase hppd symptoms maybe good to ask my Doctor Thanks

Not so much yet to be honest

Im currently using J1s formula for klonapin, its works well.. Im also building up my dose of Lamotragine have been taking for 3 week now cheers

Great I have filled in the questionnaire Id be happy to travel to London to participate please feel free to contact me at any time thank you

I

yeah its interesting. one proposed theory of the origin of hppd relates to seizure activity within the occipital lobe. also one main medication for HPPD "Klonapin" is used to treat seizure activity.. interesting to see the correlations. I myself am back on klonapin now

Hi Bro Good to hear from you! Sure i know the klonapin is good for some relief, I use it sparingly every now and then, though I know its helll to come off of. Good you are off it now. As far as i am aware YES. I have been speaking with leading Professors and last he said to me it would be talking place Jan Feb 2022 Sydney St Vincent's. If you would like.. shoot me a PM with your contact details and i can pass it onto the organizing medical team. Cheers . Happy new Year!

It is the plan that early 2022 HPPD research WILL begin January / February in Sydney Australia. We have waited long enough. This has to happen! I will be there with bells on !! Looking forward to spending some time in my old stomping ground lol

Honestly

I have empathy for your situation. Me also, was dosed unknowingly after being up all night at a rave... Next day was still there. I have extremely hardcore vivid hppd... This happen 30 years ago, so 30 years in..