Severe HPPD symptoms

[caius]

FBC--your posts are really ridiculous psuedo science. I don't know how advising people to stop taking prescribed medications and quit seeing their doctors can be construed as good advice. You are preaching a bunch of nonsense as though it's gospel.

HPPD (especially as described by the OP) is a serious concern, and should be dealt with in a way that reflects this.

 

[specialspack]

Cat likes to drop in occasionally and see what I'm up to.
He is just offering support for me in return for the support I have given him.
You see, people that have suffered severe reactions from MDMA, regardless of the cause, like to hear strong assertions and definitive opinions - even if it looks like 'magical thinking'.
They just want answers.

Even if those answers are wrong? You might as well assert that they were being punished by God for their sins, and the only way to salvation was through believing in him and leading a good clean life. That would probably be just as effective.

Members of the Advanced forum have not been able to offer even a fraction of the consolation that I have to a select few BLers.
Magical or not, I am helping people.
About two dozen in just 6 months...

ADD is not here to help give consolation and definitive answers to people suffering from unfortunate disorders.

This forum is supposed to be for the discussion of science. A central problem with the communication of scientific data to a lay public is that, almost all of the time, there are no definitive answers, no certain truths - just evidence that lends support to one theory or another. You can see this all the time, when the media or politicians try to simplify the results of research into definitive answers.

 

[First Bad Comedown]

I was wondering where everyone else was. :D

G0to -

"...there is no point in even discussing 'what ifs'."

Thousands of people affected negatively by MDMA would disagree with you.
In the absence of definitive scientific explanations, the extreme nature of MDMA recovery is well-deserving of this 'what if' game.

As annoying as you may find it, it is unavoidable.
Imagine if other mental disorders could be clearly blamed on a single event - wouldn't this event deserve a mountain of conjecture?

Science is essentially a more precise 'what if', but you already know this.

In my post history you can find quite a lot of information that stems from 'peer-reviewed' research. I have a solid background on MDMA research, even if I fail to provide citations for my countless essays. I am working on this list of citations - it is quite time consuming.

Aside from my 'brain-gut' assertion (which is somewhat subjective), most of my theories are quite BASIC and irrefutable. I am not leading newcomers astray. Regardless of the popular opinion here, there are some very basic findings that are accepted among researchers. Finding these may not be easy, but they do form a foundation of understanding. Not the 'half-baked' subjective pseudoscience that you (and others) prefer to imagine.

caius -
Refer to the above statement.

Some of my writing is subjective, but labeling it all pseudoscience ignores the real information that I spout. Are you even willing to find it, or are you just another MDMA worshiper that dislikes an opposing voice with writing skills?

I have a REAL problem with doctor's prescribing SSRIs.
That does not amount to abandoning all medical care.
Indeed, I recommend people taper carefully if stopping an SSRI with doctor supervision.
I also consider CBT to be of real value.

And of course, medicine has saved a few people from the lethal and confounding cascade of events that leads to hepatoxicity, renal failure, hyponatremia, and ischemic stroke. For acute reactions, the hospital is the ONLY choice.

The neurologists with MDMA experience do NOT prescribe anti-depressants.
That should mean something.
What the hell does a GP know that makes them more qualified?

By the way, I acknowledge that taking SSRIs often results in a quick improvement in symptoms.
This has been reported by a few people on BL - they even go as far as saying they feel a major change within the first few doses!

That doesn't sound right, does it?
It is agreed upon that MDMA 're-wires' the brain.
It is also understood that this takes place over a 'protracted' period of time.
Hmmm...

Maybe something that makes the patient feel immediately better is NOT a substitute for a 1-2 year process of 're-wiring'.
Is this more pseudoscience?
Or goddamn common sense?

I have read several anecdotal reports on BL that say SSRI use slowed down the recovery process considerably.
My own experience with Piracetam seems to confirm this.
Even in MICRO doses, the stuff made me feel fantastic by the 2nd or 3rd day.
But sure enough...when I stopped taking it the inevitable slide down-hill began.
The process of 're-wiring' was waiting for me every single time.
There is no way around this process, one must go through it.

Moving neurotransmitters around or making them more accessible to pathways is NOT a substitute for the difficult process of axonal re-organization.
There is a reason this process takes so long, and any treatment that attempts to avoid this is BAD medicine.
The idea that doctors have the answers is definitely doing HARM.
Perhaps one day new drugs or stem cell therapy will help restore or preserve original innervation patterns.
We are not there yet.

Don't even get me started on benzos...
More people went to the ER from benzo abuse than illegal drugs last year.
For one-time/emergency use they are great, but the practice of regular use is extremely foolish.
The role of doctors for people in recovery from MDMA is to research, NOT to medicate.
Healthy lifestyle, supplementation, and abundant patience is the ONLY prescription.

Oppose me with citations please.

Specialspack -

Which answers are so 'wrong'?
Again, most of my assertions are very BASIC and backed up by real research.
While my writing may be filled with rhetoric, there is real substance behind it.

But I like your analogy to religion.
Ironically, a measure of faith IS required by those in recovery.
Research does show that clinical recovery occurs eventually, it just can't explain why.

I like your finishing statement, though.
I agree with it 100%.

Much of science is NOT definitive.
We can explain that gravity is a function of mass, distance, and a universal constant...
but we can't explain WHY it exists.

Just an easy example...
But I understand that this forum does not exist for the purpose of helping the lost and weary.
I guess that's what TDS is for, but they still show up on your door-step.

Why is that?

As I said - 'They just want answers.'
Yes - even if the answers are not definitive, or even... *gasp* wrong.

I guess I'm done.
I'll see this thread later - hopefully to discuss HPPD or strokes...

 

[thenightwacth]

First Bad Comedown
I understand that you are very knowledgeable with HPPD. Well I took a tap of LSD about a month and a half ago(my entire history with psychedelics) after just a single use I experienced, awareness of mild vs, floaters, double vision (in dark backgrounds only). I have not smoked pot since, or taken any other psychedelics. Am I really experiencing HPPD? or maybe I just need to get my eyes checked? Does alcohol makes symptoms worse? I'm deeply concerned, please respond whenever you have the time. I would like to know if you had my symptoms, and if i still have hope to recover. I do feel like i'm getting better as time goes on but I need to ask and communicate with someone as experienced as you. I'm already taking Fish Oil, and working out regularly.

 

[Burn it up]

thenightwacth, I think what you might be experiencing could be just a momentary phase of extreme awareness to things you were usually ignoring. This phenomenon is completely psychological, consisting on you paying more attention to this visual distortions you might have had all your life. It is just that after the LSD experience you became more aware of what visual distortions really mean and now you are paying more attention to visual distortions in your daily life. Does it affect your quality of life in a negative way?

Interestingly enough I experienced what seemed HPPD visual distortions after some use of GHB throughout one month (2 times per week). The distortions where very mild and consisted mainly on a glowing halo which could be seen in light sources. I though it was nice, as it was quite beautiful and didn't affect my daily life. Also drinking made this effect more intense, while psychedelics or weed didn't seem to interfere. It went away after a few months. It's a pity because I really liked it, I called it "the magic" and it was fantastic to go out at night with it.

Does GHB have any record of producing long lasting visual distortions like the ones I experienced?

 

[arctica]

Has anyone heard of using neurofeedback for HPPD? It's basically biofeedback with EEG electrodes on your head. You do things like play Pac Man, and when your brain activity reaches a certain threshold, like your fast beta waves start to slow down, you hear a beep and your Pac Man guy can run faster or your your blimp moves faster in a blimp race game. I am going 2x a week for depression, but I hear they also use it for TBI, ADHD, PTSD, etc. It's not a quick fix, but the therapist I see says that most people notice a durable improvement in 20 sessions, and it seems like a less drastic intervention than adding more chemicals to the mix (I eventually had to discontinue Paxil because of the side effects, including an almost Parkinsonian amount of tremor). I can't say for certain that it's working for me, but I see strong correlations in how well I'm feeling on any given day and how fast I can make that stupid blimp go.

 

[Ghost B C]

I am in a position where I am experiencing HPPD like symptoms without significant prior drug use, my symptoms started after I was placed on a low dose anti-depressant. While on the course of anti depressants I smoked marijuana on a single occasion and this seems to be where my problems started. I began suffering from panic attacks and strange vision. I was placed on Paxil, and things suddenly got a lot worse. I got an immediate headache in the back right hand side of my head, pupils dilated, felt awful etc. I started to notice my vision was changing, starting with the appearance of visual snow. Between then and now everything has been getting significantly worse. My symptoms are as follows:

Visual snow-the first symptom
After Images from just about everything I look at, driving at night is essentially impossible. If I look at anything , and then divert my eyes, the light follows causing a trail before disappearing a few seconds later. Positive afterimages also cause me significant distress in the day.
Visual trails
Ghosting images:This is especially apparent if I am looking through glass, I.E. If I am looking out of a window at a street lamp I see the light, and then a ghost copy of it above. If I look at myself in the car re view mirror, I see my face, then a ghosted version of it mirrored above.
The illusion that patterns (and other stationary objects or things i.e. text - are moving, making reading difficult.
A vast increase of floaters and shadows moving across my field of vision (I have never noticed a floater prior to this happening)
Halo's and star bursting lights (again making night driving difficult)
Closed eye visuals (If I close my eyes and put a little pressure on my eyelids, a vortex of colours and spirals start to appear, this can even happen with one eye closed)
Some colour confusion
Patterns appearing and moving on walls if I look for long enough
Flashes of colour and light
Large shimmering circle in the centre of my vision on a few occasions.
All symptoms have gradually appeared and worsened over a period of months.

Other symptoms include panic attacks and anxiety.
I have been to multiple Neurologists, had multiple CT and MRI scans etc and none of them have had the faintest idea what the problem could be. I began seeing a psychiatrist to see if there was any underlying mental health problem. He ruled anything out and prescribed me an SSRI because he thought I was a little low. This made the symptoms a 100 times worse. I then tried Diazepam which made no real difference. I read that Clonazepam was the best treatment for HPPD like symptoms so tried that and again, it made the symptoms worse (I have heard that Clonazepam, despite being a Benzo, has an effect on serotonin) It seem's anything that is linked to serotonin makes things worse, and even when I am not on any medication, things continue to get worse (the headache in the same place doesn't get better, and is present at some point just about everyday).
This is having a major psychological effect on me, before this started I was a happy and confident 19 year old, and now I feel i'm damaged and constantly worry about how much worse it's all going to get.

The only thing I can find with similar symptoms is HPPD (infact my symptoms are identical). Could this be HPPD from marijuana and SSRI'S. I'm positing here to try and get some feedback from people with experience of this condition. What shall I do?

I have the same symptoms more or less. You have visual snow imo one form of hppd or persistent migraine aura, in your case it appears you have persistent migraine with aura, meaning a none stop visual aura from your migraine and you seem to have the migraine none stop as well, I know many who have had the visual problems from migraine but not none stop migraine, however I do sometimes during the day get face and eye pains like you and have all your vision problems. For example I have persistent migraine aura without infraction. It is strange those that hppd people and visual aura migraine persistent people have many visual problems a like and some not..it's hard to pinpoint, I personally think different drugs cause different visual problems, ldc, acid the worse, like trial imaging and so on...I think persitant migraine aura leaves like the halos at night, and blue field phonomon thing, and visual snow..imo is both from hppd and migraine aura tho so thats hard to rule out, but like I said different ways how you got it alter the visual problems, maybe people have visual snow and they have hppd or persistent migraine aura seprate and they cause different visual symptoms/problems. My theory.

Oh I should also mention i smoked weed one time in like years and then i got the visual aura migraine just 1 day later.....yeah seems to big of a confidence, as something similar happened to you and I wasn't on any prescription drugs at that moment.I think the thc or something triggers some sort of migraine or something tbh.

Oh and please don't take drugs psychiatrist give you, most will make it much worse and can permanently worsen the visual problems you are having, ''irreversible'' so we say. psychiatrist they do not know anything about this condition, actually the most expert doctors rarely will know anything about visual snow, persistent migraine aura, and hppd, hppd the more common form of some of the visual traits, including visual snow like from migraine aura persistent, not all symptoms are the same for people from hppd, or persistent migraine aura, some have some problems others have some, and some have really of the worse visual problems, the worst are image trialing from lsd or acid. Make sure the doctor knows what you are suffering from and that it's not a mental disorder. Anyhow, have you ever seen the aura in your eyes that completely made you loose your vision for like 30 mins? it's called a Scintillating scotoma. Do you suffer from blue field entoptic phenomenon as well? looking up at the blue sky seeing little sperm cells?

if you're going to attempt to take medication, I would highly suggest lamotrigine.

However, if you can, stay away from drugs as that's the reason that likely caused this, weed use thc triggered the migraine probablly and for some reason the migraine doesn't want to shut of, it seems like a none stop migraine does it not? if this is the case maybe lamotrigine or furosemide. those meds are also used for hppd as hppd symptoms are alike but not always the same as migraine aura. Please note this is my personal theories, nothing is really known to be exact about the condition, how or why or if anything is related. Strange tho that people in hppd have similiar problems with persistent, migraines aura.. or just migraine aura, like I said maybe weed triggered the headache or maybe some of it is linked? but the medication is the best for treating these problems, possibly the only treatment that has helped/worked atm cured a rare few even the medication. Like I said personally I would stay away from drugs and see if the problems diminish, as drugs and migrains are the cause, just no more migraine triggering things like chocolate or caffeine, if the drug free way doesn't work then give the meds a try...that's what I am doing, like I said those medications are the best for treatment, the two I listed..and believe me I've done much research into that, you can look it up yourself if you don't bealive me.

Also one question for you, did you say you have visual trailing? like seeing still images of objects moving? like seeing picture shot images following an image as it's moving? because if you got that? hmm, I don't personally have that and thats the worse one of the symptoms you can get from hppd, or persistent migraine aura, tho I am pretty sure it is mostly only to do with lsd or acid users of that sort, but yeah answer that for me bud is that what you got when I explained visual trialing? if you got that shit thats a whole new ball park and I'd say get on the medication asap, I don't have that personally so I'm staying drug free seeing if my problems subside, which they seem to be but then again I dont got no visual trialing, visual trailing again is like if a object is moviny you can see after images following that object moving, is that what you got?? reply, I hope not. Thanks and hope this helps, later. Oh, def check the durgs if you got visual trialing, remember again, give it time to heal if not go to meds ( if not visual trialing ), ok later.