I never expected HPPD information explode so much that the problem is not convincing people that it exists, but trying to get the almost unlimited amount of misinformation to end.
I never expected to have 1200 people on an HPPD subreddit, 1200 people on one facebook group & 3,000 people in another group with HPPD people.
Visual Snow groups are even larger.
These sites become more complex (just the technical issues like Spam Filter heuristics: are we catching real users from not registering or is it rampant.
I have reached a point where I am comfortable with the other issues around my life, and have thought about and worked in private to see if I am ready to dedicate to HPPD.
I don't want to take anything over, but I am ready to go on to get my PhD and dedicate the remainder of my life to HPPD.
I am your servant. I created a video that just shows me running through my desktop. It shows a little more about what I have.
I need to read through posts here, but from what I can tell there is not much different in the way of support and topics as there were in 2004, which the old HPPDonline.com board had 32000 topics with 400 members, I am sorry I deleted the original message board. Staff members from McLean Hospital began running through it, and a list of requirements of thing were required to happen and Harvard protects its brand, and it is possible that I could say something harmful because I was in a very controversial lab, and if you know anything about journalists: they find the weakest link. At the time, I was that link. I had a back-up, but in a week when I returned to the host I discovered it was deleted and they make no back-ups of this because you are closing a service. It was my fault to not have a local copy. There was a solution, but I screwed up.
I don't want our narrative to be spoken by someone that is not one of us or someone 100% with us.
I will remove this Admin message and other issues. I need to create an organized way to deal with 5 different HPPD centers of information. I want to work for you.
Hell, I owe you all this. Here is where my brain was at. This is what I wanted to do.
I owe this community ideas I was trying to keep close to not corrupt data, but I have designed ways you can't fake the tests. These are very general writings I start in 2009. I am including how far I was moving. I had discussed with vendors the equipment and the quotes and created proposals.
Imagine that a 6,000 dollar device can prove that we are not faking. A simple marker of the change of pupil response to infrared light. Include Visual Snow users. Perhaps there is a specific change, which can be an improved diagnostic measure. It will also talk about the new mechanism that many of you are discussing now, which will result in affecting not just GABA or serotonin.
Pupil Measurement Study
Basic thoughts: Accurate pupillometry is an essential part of the evaluation for comparing pupil diameter size between individuals with HPPD and normal controls.
It is clear from published and anecdotal reports that nighttime glare and halos may be caused by a larger pupil and which may in turn be a dominant factor leading to HPPD. Measuring the participant’s pupil diameter with precise pupillometry measurements is a crucial variable of comparison. These measurements will use infrared light. Infrared light will get the pupil to react, but the user will never know when it occurs. This prevents the startle response from controlling the pupil change. There are 5 different measurements (and probably more now) that include the velocity of constriction, velocity of dilation, percent change, total size, restricted size, etc. this will be conducted in a dark room.
Dynamic pupillometry is the measurement of pupil motion in response to brief flashes of light to either left, right or both eyes.
Dynamic pupillometry is a very powerful tool and is commonly used in both general and neuroophthalmology to objectively quantify pupillary signs such as the relative afferent pupillary defect (RAPD). Dilation lag and anisocoria can also be measured under illuminated conditions and in complete darkness. Comparison of the two results can
help identify Horner's syndrome and distinguish it from more benign anisocorias. Dynamic pupillometry is also used in Phase 1 and Phase 2 clinical studies of new drugs by Contract Research Organisations.
Pupil assessment is an important test carried out by clinicians daily and the ability of the clinician to make an accurate assessment and use this as a tool to have predictive measures for HPPD would be a public health benefit. In assessing pupil reactivity to light, the swinging flashlight test is sensitive and most relied upon. However, measurements of the pupil in scotopic and mesopic light may help to determine whether a patient has a physiological anisocoria (unequal pupil diameter) or other pathological condition.
Binocular pupillometry can help investigate the effect of drugs and perceptual disturbances on the pupil response and has also been used in psychology research to investigate the effect of fear on pupil behavior. Researchers at Nottingham University used the fear of an electric shock to monitor the resultant dilation of pupils and the reduced amplitude of light response. Another group based in Crete used the pupillometer to better understand the autonomic mechanisms behind these two features of pupil behavior and why only the fear-induced light response and not initial pupil dilation was affected by drugs such as diazepam. The research team concluded that the first response was likely to be a
result of central parasympathetic innervation and the latter response due to central sympathetic excitation.
Prepulse Inhibition Study
I am interested in using PPI as an operational measure of sensorimotor gating with HPPD and control participants. A number of neurological and psychopathological disorders that have known dysfunction in brain substrates that regulate PPI also have evidence of impaired cognitive, motor or sensorimotor inhibition. We intend on determining if the HPPD population has impaired senorimotor gating, which will help demonstrate the neurological basis for HPPD.
PPI occurs when a relatively weak sensory event (the prepulse) is presented 30–500 ms before a strong startle-inducing stimulus, and this reduces the magnitude of the startle response. In humans, PPI occurs in a robust, predictable manner when the prepulse and startling stimuli occur in either the same or different sensory modalities (acoustic, visual, or cutaneous). my objective is to examine if visual persisting perception disorder influences on PPI related to the underlying construct of sensori- (prepulse) motor gating (startle reflex; measured with electromygraphy).
I can compare our results with past PPI studies with other psychopathological and neurological disorders, which form a group of related gating disorders. Lastly, we will note any effects correlated with different medications that individuals may be taking that could influence PPI in individuals with HPPD. Notably, others (Pouretemad et al. 1998) reported PPI deficits in individuals with “non-epileptic seizures”, which may constitute a variant of Temperal Lobe Epilepsy. This latter observation suggests that psychosis per se is not a requirement for deficient PPI in seizure disorder patients.
In humans, Abduljawad et al. (1997) assessed the effects of clonidine and diazepam on startle and PPI in normal male volunteers. Subjects were tested in a within-subject design in which they received oral doses of placebo, 10 mg diazepam, and 0.2 mg clonidine in a balanced double-blind protocol. EMG recordings from the right eye were obtained during each drug’s peak plasma level for maximal CNS effect. Both drugs dramatically reduced the magnitude of startle responses, neither drug significantly altered PPI calculated as a percent score.
Hallucinogenic serotonin agonists, such as 2,5-dimethoxy-4-iodoamphetamine (DOI), disrupt PPI in rats (Geyer et al. 2001), psilocybin, however, does not appear to disrupt PPI in rats reliably, perhaps because it is less selective as a serotonin agonist relative to DOI. As discussed in Geyer et al. 2001, this 5-HT 1A agonists increase PPI in mice despite the fact that they decrease PPI in rats. Thus, the 5-HT 1A agonist actions of psilocybin, which are not shared by DOI, may be responsible for the increased PPI observed in human subjects by Gouzoulis-Mayfrank et al. (1998). PPI’s unique actions will help support information related to the neurobiological pathways and receptor sites
potentially implicated in the cause of the disorder. Intraocular Pressure (IOP) Measurements
Measure IOP using a standard Goldmann Applanation Tonometers, which are extremely accurate devices for the measurement of intraocular pressure between 0 to 78mmHg. As the area of applanation is only 3.042mm, the scleral rigidity does not influence readings. Intraocular pressure changes can lead to visual distortions similar to HPPD, and drugs, including cannabis.
The pupillometer is a stand-alone hand-held battery-operated instrument (NeurOptics, Inc., Irvine, CA). The pupillometer is a sophisticated computer with a color LCD screen,
a self-contained digital camera, and an integral illumination source. The device illuminates the eye of a patient with a set of infrared light rays at 850 nm, a level beyond
the normal response of the human eye. Images are acquired with the digital camera, which uses an infrared-sensitive sensor array. The device analyzes 124 images in each
measurement sequence and provides detailed information regarding a number of pupil functions within 3 to 4 seconds. These measurements include in a dynamic pupil
measurement protocol reporting pupil light reflex measurements including: Maximum pupil size, minimum pupil size, percent constriction, average constriction velocity,
maximum constriction velocity, 75% recovery time, and dilation velocity. The light stimulus intensity and duration can be altered, and X and Y are chosen because of Z.
Numerical results are obtained with The PLR-200™ Pupillometer with iDecoder software that enables us to downloaded to a computer via a universal serial bus port. Each
time the device is used, a patient's identification number, the eye being examined (right or left), and the pupil dynamics are recorded. The data are time labeled, documenting
compliance with the medical protocol. Such electronic documentation is designed to eliminate the types of errors that can complicate manual data entry. The pupillometers
also automatically calibrate for vertex distance (the distance from the pupillometer lens to the front of the subject's eye). The vertex distance can vary significantly between subjects and affects the accuracy of the measurement.
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