Spartan

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On 2/3/2020 at 8:21 AM, MattyHouseMouse said:

I came on here trying to help and wasn't expecting this kind of reception if I'm honest. The flakiness of your convictions is plain to see. We have @AlphaBeta who's vision is different when his eyes are watering and can see light refraction when he looks straight at a light source, and denies their own posting history. Also @Kalo who  appears to have taken some psychedelics then seen hppd less than a week later... and made no connection between the two.... can you not see that to an outsider to your community how suspect all this seems? You all seem to be determined that you have a serious visual health issue and appear blissfully unaware of the power of the subconscious mind. Now if my theory WAS right, it would be pretty cool wouldn't it? Bit of cognitive behavioral therapy and it would be bye bye hppd...

This forum is clearly no place for this kind of discussion,  I think I will take this to the scientists,  dr Abraham et al.

Thanks.

Matty.0

Came on there trying to help... ?? 

Really see your empathy ozzing NOT

More like a massive insult. 

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I have a question

If serious hppd sufferers were monitored in hospital say for a period of 2 weeks.. 

Do you think the report from medical staff would pick up any significant abnormalities or pathologies? 

With our condition/ illness it's so hard because everything is happening on the inside and not so many blatant physical manifestations.

Please share your thoughts. ???

11 hours ago, AF44 said:

I am also a long-term sufferer, about 26 years. My closest friend knows that I have HPPD and I jokingly (or maybe half-jokingly) said I wish I’d go blind and she said, “I don’t think it would change anything, since you still see stuff with your eyes closed.” 
I am so glad you have your parents as a great support. I have my husband…no clue what I would do now without him. I was functional enough I suppose, through my 20’s and 30’s, I had no idea about HPPD but knew my issues were due to my last acid trip. Sometimes I didn’t even notice it, then it would get bad, then go back to baseline, etc. So, when I was like 33(?) I was addicted to Red Bulls and was drinking them every day. Also exercising my buns off! Whaddya know…everything got worse! (Imagine that.) Like, intolerable. I Googled of all things “caffeine overdose” because I figured maybe I OD’d on the Red Bull. I went through the maze and ended up on a Wikipedia page about HPPD! I couldn’t believe my eyes. (I can never believe my eyes, har har.) So I was like “Great! Klonopin is the treatment!” I immediately told my family, and went to a neurologist, long story about him not believing me but then grudgingly looking it up and agreeing to prescribe me the Klonopin, etc…now I’ve been on it literally every single day since. Not one day without. And I still sometimes get flares, like now. I thought my recent flare had subsided, but it’s back. So I was really affected by what has been happening with you, because I know it would literally be Hell on earth if I were to be taken off that medication. I’m always keyed up each month when it comes time for my refill, nervous, sad thinking about the future if I am cut off. My family needs me, I have grandkids (that makes me sound so old! I’m “only” 45. Maybe that is old.) 
Yes, I didn’t even think about the expense of seeing someone like Dr. Locke. I can’t afford that either. Now I have forgotten my entire point. I swear it’s the HPPD. I get so forgetful and foggy that I start off trying to respond to what was written to me, then end up talking about something completely different and unrelated and forgetting what the original convo was supposed to be about. Ugh! Sorry. I guess my whole point is that I really hope you start feeling better and I will be praying hard for you

26 years is a really long time. I understand the going blind thing tho don't think it would make a difference to be honest as it's etiology is from the brain with CEV (closed eye visuals) included.

That is really awesome that you have your husband as your rock etc 

Yes can totally relate with the caffeine thing and any other stimulus like pseudoephedrine or even anti depressants definitely exacerbate and apmliy symptoms visual and non visual.... along with stress / any stressors to the CNS. 

Thanks for that, yes klonopin cold turkey from a high dose can be dangerous/ that's why I was monitored in hospital, tho yes certainly comeing off greatly heightened / worsened all symptoms as well as DP DR etc and new symptoms like agoraphobia etc K pin withdrawal can be brutal. 

Thankyou so much for your the words and for your prayers etc. Really means alot to me. Will keep you in my prayers too. Wishing you all the very best. 

Yeah i understand they have to live tho it would be nice if they could make treatment slightly more accessible to the people who really need it. 

Welcome to the board.. unfortunately I don't know any experts in that part of the world. 

Google maybe helpful in tracking someone down.

Take good care ! 

9 hours ago, LonelySailor said:

Hey man! I am really sorry about your situation and i fell a lot that you fell too. I live in Brazil, and apparently no docs here know about HPPD. I've been hopping around medics that can't help me or they try some experimental treatment based on a hunch.  

I passed trough some really hard times, including heavy depression with suicidal thoughts. Things got better after a while, then got worse, then got better. Its not easy but know that you are not alone in this. 

I know its hard to imagine getting better when you are in a hole, and this kind of get better talk makes you want to punch the guy that gives the speach. But don't lose hope. I havent found anyone that could help me yet, but im trying, and if you couldnt find someone to treat you, it doesn't means that it is impossible. There are people around there that can help us (i think in the US its better than in latin-america haha) and they will appear one way or another.

Just keep on fighting, heads up and have faith!!

Heyy sorry to hear.. that must be very challenging with no experts in your country. 

Klonopin helps take the edge of slightly for me. 

Yeahh I understand how tough things can be. I think your environment will play a key role. 

I've been trying for a long time to get help. (30 + year sufferer) tho only thing that makes slightly more manageable Is klonopin. 

That's cool you are in Brazil . I have a beautiful Brazilian girlfriend from Nathal , she knows about my hppd as she had to look after me while I cold turkey off 6 mills of klonopin. 

Yes always keep fighting. Tho there are situations where if someone or something is trying to destroy you and everything you have worked and stand for, that kind of stress and exacerbation sometimes makes me seriously consider not being here any further.

Thankyou man. Please take care of yourself, I hope you will find the right treating professional as soon as possible. 

14 hours ago, AF44 said:

I am so terribly sorry to hear that. You DO have a human right to be healthy and have a good quality of life. And yes, I HATE the fact that these ridiculous medical professionals will not prescribe benzos to people who actually need them for a severe medical issue. It’s not our fault other people abuse them, or that these so-called psychiatrists don’t know their ass from a hole in the wall. I think it is especially heinous that you were prescribed them in the past and got cut off, which then made everything a hundred times worse. What state do you live in? I live in Oregon and we are pretty hippy-dippy and all into the importance of striving to help the mentally ill. I feel lucky to live here especially in this particular county, where I go to a mental health clinic that staffs very compassionate medical professionals. I never even get charged a fee or copay (I do have Medicare, not because I’m old, lol, but because I’m on disability for having Bipolar Disorder-which seriously I think is just HPPD.)  I guess my point is that I know a lot of states-assuming you live in the U.S-are tough and don’t give much of a crap about mental health. Oh, I was just thinking, I heard there is actually a directory of doctors who work with people who have HPPD. If you could get your hands on that information, maybe you could start contacting people. I am a pretty proactive person when it comes to managing my health (probably too proactive, as I am a raging hypochondriac!) and I’m also the one to dive maniacally headfirst into thinking of solutions for other people who are suffering from medical issues, especially weird ones where doctors are scratching their heads and don’t bother to take the time to figure shit out. So-do you have family members who understand what is happening and are willing to advocate for you no matter how much effort it takes? Sorry for this long response but I seriously cannot bear to think of your suffering and I truly BELIEVE we can find a way to alleviate it, at least somewhat. You can email me if you want/or are able to, seeing as your eyeballs are probably about to fall out of your head. Sometimes I wish MY eyeballs would fall out of my head Much love and I will be praying for you.

thankyou im actually Australia..

I'm a severe and long term sufferer / over 30 years. 

Yes a part of the law is that human beings have the human right to medical treatment, tho I feel I am got getting it sadly and therefore condition worsening and immense suffering.

Reason things have been so worsened over the past 2 years is because I have had massive existential treat / stress and trauma that is not going away, yet. This has driven me to the edge with no relief. 

I'm currently in disability support also for severe hppd. 

I recently contacted Dr Locke in the USA / hppd specialist, tho he charges something like $500 USD an hour . That's out of my price range. 

I have played a key role in the existence of the hppd protocol study, tho that is 800K to get It started, don't have it yet and Still looking at funding options. 

Yes I have a mum and a dad they understand and they are awesome. They are likely the only reason why I'm still here physically today. 

Yeah I did a recent post about removal of eyeballs to see if still hallucinating tho unfortunately many think it would still be a yes because it's coming from the brain and not the eyes. 

Thankyou I appreciate the support.

Wishing you blessings , peace and healing also.

Thankyou 

I'm out now. 

They diagnosed me with adjustment disorder on top of hppd which is bullshit because the trauma and stress I have been though have acasebated hppd severely. 

Diagnostic criteria for Adjustment disorder is not to have another condition exacerbated by the event, which I do and have do so this diagnosis is inaccurate for me. 

 Cannot even get prescribed a benzo after numerous psyches, neuro-psychs and hospital admissions,  because I've had dependence on the past, who gives a fu*@ it's for a severe chronic condition and I need some treatment. I have that human right.

I seriously cannot take this much longer, I felt invalidated by mental health ward, no one takes seriously.. well that will change when I'm fucking dead. 

Many thanks will do..

You are all awesome. Many thanks . Will do ! 

My hppd became seriously intolerable , highly severe,  serious with prolonged ongoing stress with no treatment. 

I've now been admitted by ambulance to an acute psychiatric unit.

Possibly the internet is to give me MRI and testing etc to rule anything else out and to trial various medications etc 

Likley will be a 5 day / night visit.

Has anyone had any experience with this , Quitiapine. 

I was put on 100 mgs, ( 50 mg extended release ) .. and could not function because so sedated. Really nocked me around. 

Also visuals possibly heightened, like mind bending stuff. 

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Yes exactly it's a brain thing.

Would not make any difference.. if happened to be blind. 

My understanding is CEV = closed eye visuals. 

Hi community

Just wanted to put this out there..

Does anyone know of someone or a person that may have "deep pockets" i.e. who is financially well off..? 

Someone who would like to help make a difference in the world by contributing to the hppd study and work towards finding a cure for the condition, for current suffers and future generations. 

Please have a brain storm regarding this and please put the word out there! 

Feel free to use the pitch in research advertisements 

IMPORTANT RESEARCH INTO HPPD-ADVERSE VISUAL EFFECTS FROM PSYCHEDELICS 

( can even modify to include your own story) 

Please get in touch.  I can put the individual directly InTouch with the reaserchers to share more. 

Thankyou 

Kind regards.

Ben 

9 hours ago, Spartan said:

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IMPORTANT RESEARCH INTO HPPD-ADVERSE VISUAL EFFECTS FROM PSYCHEDELICS 

HPPD stands for hallucinogenic persistent perception disorder. This is a disorder that occurs after the use of psyocactive substances, these include LSD, MDMA, marijuana, magic mushrooms,even cough medicine has been known to trigger this condition. I myself have been living with severe hppd for over 30 years. 

HPPD leaves a person with disturbed vision, halos and trails around lights, a feeling of depersonalization and derealization, not knowing what is real or not, everything they see is brighter and can warp and move, visual snow is very common with HPPD also. 

All these symptoms leave the sufferer with feeling of despair, depression, anxiety, social withdrawal and isolation , suicidal thoughts, many people with HPPD have in fact ended their life rather than endure this horrific condition. 

There is the chance to have a study of this condition at the Macquarie university in Sydney , lead by internationally acclaimed professor, Dr Harry McConnell. Professor McConnell has the protocol and ethic approvals to go ahead with the research. 

This study is vital to help people suffering now with HPPD and for those that sadly acquire it in the future. Awareness is also needed about this condition. 

The Macquarie study needs funding. 

Would you be interested in meeting with myself and Professor Harry McConnell so we could discuss more? 

If so, please reach out to me via direct message. 

Thank you for your time 

Kindly 

https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo

That is awesome. Massive congratulations!!! 

Okk.. interesting to know.. 

Yeah I feel I have definite elements of OCD also..  tho in an attempt to try and distract myself from symptoms. 

Can severe hppd cause OCD ?

Has anyone seen any cases of this? 

Thanks 

Yeah I totally understand this.. 

I was cut from the medication from silly doctor 

Yes has been exacerbated hugely since 

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