onelovez

@fruitgun I think you are like me - whatever I take or used to, take before (relaxing, stimulating, good for brain, improving mitochondria/cell metabolism etc etc) - it either makes me feel bad and it just keeps getting worse with every dose OR sometimes it makes me feel GOOD in the first place like Lion's Mane!!! and then after few days taking it i was becoming worse and worse and right now if I take a tenth of a dose I was taking before - it makes me wired. That happens with most substances I develop some weird sensitivity to them... Before I took few grams of Vit C- it overexcited my brain.. now if i take a pinch - i will feel really bad. It seems that I am mercury toxic as the only thing that has been helping me ever is DMSA - a mercury chelating agent - I am doing Andy Cutler's chelation protocol - it is fucking genious regarding removing heavy metals.. Alpha lipoic acid is meant to chelate mercury from the brain then (while DMSA only from the body), but I cannot tolerate Alpha lipoic acid - smallest doses make feel bad for looong time. But I advice anyone to try it and if you do, DO IT ONLY BY ANDY CUTLER'S PROTOCOL. You can find lots of info on it on Andy Cutler Think Tank facebook group. So if you feel similar to me maybe you should look into mercury toxicity.. you can find out if you have mercury by doing a hairtest and interpreting it in a right way or simply by chelating with DMSA and ALA and seeing your reaction to them (good or bad - it means the same thing - mercury toxicity). Lot of people in that group experience Multiple Chemical Sensitivity.. some of them, just like me, also cannot tolarate fish oil, omega 3 , magnesium, vitamin C and some other things.. Good luck.

Both VS and anxiety as well as many other symptoms. Thats what happened to me. I cannot tolerate it.. But I will consider taking smal pinch of it everyday, cause two pinches is already too much for me personally.

Hello fellows, I am starting construction of a new website about Hallucinogen Persisting Perception Disorder and Visual Snow. Having this website online, will bring a lot of opportunities in terms of spreading awareness, working towards the future research and making associations with other institutions, doctors and scientists. There are few of us behind this project - it is not a one man operation, so we have good chances of succeeding. The website will additionally serve as census and will include a map of all doctors, researchers and institutions dealing with HPPD, people affected by HPPD and VS - something that will improve our position during any dialogs between the community/foundation and other medical/governmental institutions - HPPD and VS are still considered to be extremely rare conditions - we NEED to prove them otherwise! By showing them real numbers of the occurrence of these conditions, we stand higher chances of getting governmental funds for the research. There are also plans to add certain tools to the website like scientifically designed surveys which will collect important data, from which number of candidates will be picked to participate in a reviewed study to look for any patterns and draw out certain conclusions. I have been in this community for a while now, actively researching HPPD, pushing the community towards organisation of our work force and trying to come up with different treatment and research ideas and so on - if you are not sure of my credibility - feel free to ask Jay the forum's admin/moderator about me. I would like to ask you if you would consider a donation for the website. We need around 600-800 euro to have it professionaly built (the price depends on our expectations which depends on how much money can we collect). I will be conducting the work with the a professional web developing company g2team.pl myself. If we get any extra funds above that goal, even better - doing it once properly will be much better than having it done cheaply and then having it to be rewritten/rebuilt at later stage, when we want to expand the website. Before any donations being made - all the donators would have a group skype meeting with me to answer all questions and express all doubts and also to know how much money all of us together are transfering for this cause - so everything is transparent and clear to everyone as possible. An invoice from g2team.pl will be issued, for everyone to see. So far there is as much as 5 people donating so far including myself, we need few more. Please contact me at hypnoticaz@wp.pl or skype: pawel.kaluza10 We are very committed to this project and we will not stop working on it until we come up with good news for HPPD and VS communities in terms of research, treatments and cure. Please consider this post carefully, Yours faithfully, Pawel Kaluza

I heard it can increase symptoms x100, but in the longterm it can help to people with lyme (its an experience i heard from one guy with lyme). Lyme by the way can be strikingly simmilar to some HPPD cases (there is a suspection that it could cause HPPD for some).. Anyway - if you are to take it, start with small doses.. maybe even 1 mg and increase, to see with what dose do you feel comfortable with, then take it for few weeks/months and don't try to push it / increase the dose to fast. See if there is any long-term benefit. That is my advice. All the bests

I believe HBOT treatment holds a promise in reduction of our symptoms. Hopefully treatment too. This girl has done a supervised study with a SPECT before and after 68 treatments of hyperbaric oxygen chamber therapy. The results are pretty good, neurologically and symptom wise - she told me personally she feels much better with her symptoms now. http://puu.sh/qgFeO/a00719d18a.jpg

http://neurosciencenews.com/social-behavior-immune-system-4679/ Guys let's start a discussion - what ways do you know to improve your immune system? Brake from the forum mentioned that there is some bacterial strain that can improve social interactions in autism.. I am very interested although my time is limited on carrying out any research. I also heard of a guy that controlled/fought his candida by having home made yoghurts everyday for few months. I think we should try this kind of treatments too - maybe it can speed up the recovery or help in some other desirable ways.

hello, please pass me on the contact details.. do you think they would interview an english speaking person?

It has made me really "stressed", felt some burning inside my chest ad my head. Felt like just before some recreational drug was about to kick in (the unpleasant feeling). I think im worse since that day slightly, but take a note - I drank tea (coffeine I guess) lately that worsened my hppd "permanently", still feel the effects of it 3 weeks later... I took an 8mg pill ... I think injections of Vit B12 also caused worsening in the past (even though I was Vit B12 deficient before the injections..) I am planning to do metal chelation with Andy Cutler's Protocol (fb group, highly recommended). Many people there report Multiple Chemical Sensitivity to same things as me (magnesium, vitamin C, fish oil and some others), same as people there report tinnitus, brain fogs and so on.. After the chelation, I hope that my Chemical Sensitivity will be improved and I will be trying few supplements again.

iI experience worsening with magnesium too. Same with Vit C, any type of Omega acids in any form, any relaxing or waking up herb/tea.. basically anything that calms down the nerves and anything that excites them. It could be the magnesium for you too. Try lowering the dose by 10 or more and stick to it for a longer time. One guy from a chelation group on facebook claims he is intolerant to Vit C and magnesium in a same way as me (no hppd though, just Multiple Chemical Sensitivity, maybe cause of toxic metals in his body). He became tolerant to it by using very low doses continously from what he says, took him very long time though, like few months or so.

I have made an edit with new tests that a friend has sent me. He did a hair test for metal toxicity and a stool sample for infections. "Anonymous user no. 2 Metal toxicity test Test for pathogens, bacterias, viruses, fungi. https://www.dropbox.com/sh/zsef01c6avnum34/AACrpP-AkppqTREkHiRW6z19a?dl=0 By now I can say I have read a lot about the link between metal toxicity and the presence of bacterias/viruses like lyme/candida etc. You will not get rid of lyme virus if you don't remove toxic metals from your body. I am shaping a new theory where the infection could underlie some cases of VS/HPPD. As percentage of people with lyme get exact VS/HPPD symptoms, who apparently happen to have metal toxicity in all/most cases, people with autism/aspergers also happen to experience VS/HPPD symptoms, who as you might guess by now are commonly suspected to be metal toxic. See the correlation? Evidence for VS in aspergers: https://www.dropbox.com/s/j4kenci5ljok410/ss%20%282016-03-05%20at%2011.21.54%29.png?dl=0 https://www.dropbox.com/s/y7vkpofx62qdq3r/ss%20%282016-02-11%20at%2011.46.39%29.png?dl=0"

no more medical tests in the whole community?

i gonna try finasteride soon and report back

No drugs with HPPD , simple as.... try it and regret it. My opinion.

Recently i tried clonodine which reduces adrenaline turnover.. it made me feel really chilled, its something that I needed.. I really enjoyed the effect of the reduction of adrenaline on my HPPD... however after 2-3 days taking it I already felt the rebound effect as the drug is wearing off and the adrenaline goes high up then and i can't think straight... i decided to get off clonidine, it feels dangerous to me to get my body used to it.. there are some studies warning about its rebound effect too. The effect of clonidine made me think though.. If there was something natural that acts similar, reduces adrenaline, with no such strong rebound effect.. Then sustaining that thing for few weeks or months could improve HPPD. Im sure exercise and yoga can reduce adrenaline too. I have read about lavender oil - im trying it today, but all anxiolytics make my hppd worse in the end so I don't have any high hopes. After trying it I already have a bad feeling about how I gonna feel tomorrow.. However Trip To Hell got good results with lavender oil improving sleep.. So guys can you think of any other supplements/ways of decreasing adrenaline or calming down in any other way than working on GABA receptors?

My advice for two of you: 1. everything that visual said 2. try ketogenic diet.. it is bound to make you feel better, calm your brain down and possibly reduce the seizures (keto diet has been used for people with seizures). its a hard diet to sustain, if you are a carbs/love craving person like me, but if you got symptoms as bad as seizures, im sure it will give you the motivation to keep up the diet. let us know how these work for you

If I experience worsening of symptoms iwth any substance, it will keep worsening with each time I take that substance again.. Dont bother with that drug.

Ok i tried it for one day and one day off and then again same pattern - to see if I have any bad reaction to it. I thought it improved something. Few days later I did slightly higher doses than before (only 25mg) for 2 days in a row.. It worsened my HPPD in a way that I can't think well , now im just running away from any mental work... So my suggestion don't bother with quetiapine.

chances are low unfortunately if you get reaction like this I would discontinue the drug.. don't risk it.

I saw lavenders action on 5ht1a receptor and I was hoping it would be of some help in treatment of HPPD.. Im trying it first day today.. but as you say it will prob improve sleep and thats about it..

https://en.wikipedia.org/wiki/Quetiapine Has anybody tried it? Any for and against? I have seen one person online saying it helps her with HPPD recovery. I am thinking to try it.. but has anyone heard anything about it or tried it? I know that antipsychotics are contraindicated, but maybe not all. I really like what this guy said about speeding up the hppd recovery..

Aspergers syndrom? I have heard something about it. There seems to be connection between aspergers and visual snow syndrome (possibly hppd).

Mr.50 do you take anything that affects the serotonergic system? Im looking into quetiapine, somebody said it speeds up the recovery of hppd. (only one person though) I could not pm you, dont know why.

man, don't bother. MRI is not gonna show up ANYTHING..... It hasn't show up anything up to date on HPPD as studies say!! its a awaste of money bro. Doctors don't seem to come up with anything smarter then stupid MRI. Do one of those - EEG, fMRI, MRS, PET and SPECT they will most likely show something, although I could be wrong about just one out of them all. I have done little research, so you can get an idea of what those examinations are able to check. Link http://www.evernote.com/l/AbT7r1jufm1MuL4W5LHATsZmBT4nSmdpzZM/ or just read text below. Positron Emission Tomography (PET) Scan PET is a nuclear diagnostic test that can detect and stage most cancers. PET can also provide early information about heart disease and many neurological disorders, such as Alzheimer's disease. A PET scan examines the body's chemistry. A PET image can map the biological function of an organ, detect subtle metabolic changes, and may be used to determine if a tumor is benign or malignant. PET scanning (positron emission tomography) is based on the fact that the brain uses glucose for energy. By labeling a glucose molecule with a radioactive "tag," and then inhaling radioactive glucose and placing the patient's head under a large geiger counter, one can identify abnormal areas of the brain that are underutilizing glucose. Because cyclotrons are needed to generate the radioactive gas, PET scanning is not widely available. Most fMRI scanners allow subjects to be presented with different visual images, sounds and touch stimuli, and to make different actions such as pressing a button or moving a joystick. Consequently, fMRI can be used to reveal brain structures and processes associated with perception, thought and action. The resolution of fMRI is about 2-3 millimeters at present, limited by the spatial spread of the hemodynamic response to neural activity. It has largely superseded PET for the study of brain activation patterns. PET, however, retains the significant advantage of being able to identify specific brain receptors (or transporters) associated with particular neurotransmitters through its ability to image radiolabelled receptor "ligands" (receptor ligands are any chemicals that stick to receptors). 1) Use a specialized radioligand for something involved in the particular neurotransmitter system. To measure serotonin, we'd use C-DASB which binds to the serotonin transporter. That allows a relatively direct inference of how active serotonin is. This is for PET scanning. Measuring serotonin synthesis: from conventional methods to PET tracers and their (pre)clinical implications http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3034914/ Single Photon Emission Computed Tomography (SPECT) Scan SPECT scan is a nuclear test that can provide information about blood flow to tissues and metabolic activities in the body. It is used frequently in patients with epilepsy to help pinpoint the area in the brain involved in producing seizures. It is also used to help identify certain types of tumors, and can provide early information about neurological disorders such as Alzheimer’s disease. It is useful in diagnosing certain spinal conditions including stress fractures, spondylosis, tumors and infections. A small amount of a radioactive drug is injected into a vein and a scanner is used to create detailed images of areas inside the body where the radioactive material is absorbed by the cells. The test takes between one and two hours to complete. SPECT scanning (single photon emission computed tomography) is similar to PET scanning in that a radioactive chemical is administered intravenously to the patient, but the radioactive chemical remains in the bloodstream and does not enter the brain. As a result, the SPECT scan maps the brain's vascular supply. Because damaged brain tissue normally shuts down its own blood supply, focal vascular defects on a SPECT scan are circumstantial evidence of brain damage. The advantage of a SPECT scan over a PET scan is its ready availability and relatively cheap cost. Recent studies have demonstrated abnormal SPECT scans after head trauma when the CAT and MRI were normal, suggesting that the SPECT scan is more sensitive to brain injury then either CT or MRI scans. Because the radioactive chemicals used in SPECT and PET scans are carried to all parts of the body by vascular tree, SPECT scans and PET scans are used judiciously in patients of reproductive age. MR Spectroscopy (MRS) able to check glutamate/gaba? http://radiopaedia.org/articles/glutamine-glutamate-peak https://en.wikipedia.org/wiki/In_vivo_magnetic_resonance_spectroscopy The types of biochemicals (metabolites) which can be studied include choline-containing compounds (which are used to make cell membranes), creatine (a chemical involved in energy metabolism), inositol and glucose (both sugars), N-acetylaspartate, and alanine and lactate which are elevated in some tumors. fMRI https://en.wikipedia.org/wiki/Functional_magnetic_resonance_spectroscopy_of_the_brain 13C MRS is a special type of fMRS particularly suited for measuring important neurophysiological fluxes in vivo and in real time to assess metabolic activity both in healthy and diseased brains (e.g., in human tumor tissue [34]). These fluxes include TCA cycle, glutamate-glutamine cycle, glucose and oxygen consumption.[6]13C MRS can provide detailed quantitative information about glucose dynamics that can not be obtained with 1H fMRS, because of the low concentration of glucose in the brain and the spread of its resonances in several multiplets in the 1H MRS spectrum.[35] Migraine and pain studiesfMRS has been used in migraine and pain research. It has supported the important hypothesis of mitochondria dysfunction in migraine with aura (MwA) patients. Here the ability of fMRS to measure chemical processes in the brain over time proved crucial for confirming that repetitive photic stimulation causes higher increase of the lactate level and higher decrease of the N-acetylaspartate (NAA) level in the visual cortex of MwA patients compared to migraine without aura (MwoA) patients and healthy individuals.[17][20][21] In pain research fMRS complements fMRI and PET techniques. Although fMRI and PET are continuously used to localize pain processing areas in the brain, they can not provide direct information about changes in metabolites during pain processing that could help to understand physiological processes behind pain perception and potentially lead to novel treatments for pain. fMRS overcomes this limitation and has been used to study pain-induced (cold-pressure, heat, dental pain) neurotransmitter level changes in the anterior cingulate cortex,[42][43] anterior insular cortex [4] and left insular cortex.[44] These fMRS studies are valuable because they show that some or all Glx compounds (glutamate, GABA and glutamine) increase during painful stimuli in the studied brain regions. Cognitive studiesCognitive studies frequently rely on the detection of neuronal activity during cognition. The use of fMRS for this purpose is at present mainly at an experimental level but is rapidly increasing. Cognitive tasks where fMRS has been used and the major findings of the research are summarized below. Cognitive task Brain region Major findings Silent word generation task Left inferior frontal gyrus Increased lactate level during the task in young alert participants,[31] but not in young participants with prolonged wakefulness and aged participants implying that aging and prolonged wakefulness may result in a dysfunction of the brain energy metabolism and cause impairment of the frontal cortex.[45] Motor sequence learning task Contralateral primary sensorimotor cortex Decreased GABA level during the task suggesting that GABA modulation occurs with encoding of the task.[46] Prolonged match-to-sample working memory task Left dorsolateral prefrontal cortex Increased GABA level during the first working memory run and continuously decreased during subsequent three runs. Decrease of GABA over time correlated with decreases in reaction time and higher task accuracy.[47] Presentation of abstract and real world objects Lateral occipital cortex Higher increase in glutamate level with the presentation of abstract versus real world objects. In this study fMRS was used simultaneously with EEG and positive correlation between gamma-band activity and glutamate level changes was observed.[3] Stroop task Anterior cingulate cortex (ACC) Demonstration of phosphocreatine dynamics with 12s temporal resolution. Stroop task for this study was chosen because it has been previously shown that left ACC is significantly activated during the performance of stroop task. The main implication of this study was that reliable fMRS measures are possible in the ACC during cognitive tasks.[8] Collection of cerebral fluid 2) Collect cerebrospinal fluid. We can often either measure levels of a transmitter, or a related metabolite or precursor. For example, Neurotransmitter levels in cerebrospinal fluid in relation to severity of symptoms and response to medical therapy in Parkinson's disease. Urine sample: 3) Urine samples for less direct inferences of the above. For example, phenethylamine, which acts as a natural dopamine releaser (many stimulants like amphetamine are substituted phenethylamines. Amphetamine is short for alpha-methylphenethylamine, for instance), is present in lower amounts in urine samples from ADHD patients. Biomarkers and attention-deficit/hyperactivity disorder: a systematic review and meta-analyses. To see the relation of phenethylamine to dopamine levels, consider the biopathway shown here in this nice wikipedia graphic: Dopamine You can do quantification of Serotonin using HPLC.

Guys this is REALLY IMPORTANT actually. This will help us to determine the direction in which the research should go. Please talk to everybody you know, affected by hppd or VS, about sending us the medical tests.

I believe it is important that we make a database of medical tests that we carry out, so later we can present it to the people interested, like a neurologist or psychiatrist. It will give them a better view when looking at few similar cases rather than just one (and maybe the first one they are going to see in their life-time). Please post your pictures/copies/files of your medical examination, pm them to me or send through e-mail pablo.brasil@gmail.com and I will list them in here. Doctors will have a better idea about VS or HPPD when they are presented with examinatins of few different people. My medical examination (I plan to do fMRI soon): qEEG (in polish) - https://www.dropbox.com/sh/0pk4e3kicgu6kbo/AAD3pQb3wxQjSC_ax2RGVO7ia?dl=0 Scintigraphy - https://www.dropbox.com/sh/niirgajrgk21378/AABWuyDF5-PQUfHb8VX-Lba1a?dl=0 Results (translation): The analysis of CT images (cross sections, sagittal and coronal) and three-dimensional reconstruction obtained after the administration of EV radiotracer (99mTc - ECD) evidence of hypoperfusion areas in the projection of the upper front-paretial wolf (bilateral) and fronto temporal (left , discrete) and observed in cross-sectional tomographic cuts 11-13, coronal and sagittal 16-18 7-10 as well as in three-dimensional reconstructions. Anonymous user no. 1 Magnetic Resonance Spectroscopy (MRS) http://www.evernote.com/l/AbR7n-OYgchCvKK5B7iicBQGVzQhRkJ36Kw/ Results (translation): The presence of inverted choline (CHO) peaks can be observed in relation with the N-acetyl-aspartate peaks in the range of temporal bilateral lobes including the hippocampus. These peaks in the univixel spectroscopy discard structural damage, however it suggests the presence of neural dysfunction in temporal lobes. No lactate or myoinositol peaks were observed. Anonymous user no. 2 Metal toxicity test Test for pathogens, bacterias, viruses, fungi. https://www.dropbox.com/sh/zsef01c6avnum34/AACrpP-AkppqTREkHiRW6z19a?dl=0 By now I can say I have read a lot about the link between metal toxicity and the presence of bacterias/viruses like lyme/candida etc. You will not get rid of lyme virus if you don't remove toxic metals from your body. I am shaping a new theory where the infection could underlie some cases of VS/HPPD. As percentage of people with lyme get exact VS/HPPD symptoms, who apparently happen to have metal toxicity in all/most cases, people with autism/aspergers also happen to experience VS/HPPD symptoms, who as you might guess by now are commonly suspected to be metal toxic. See the correlation? Evidence for VS in aspergers: https://www.dropbox.com/s/j4kenci5ljok410/ss%20%282016-03-05%20at%2011.21.54%29.png?dl=0 https://www.dropbox.com/s/y7vkpofx62qdq3r/ss%20%282016-02-11%20at%2011.46.39%29.png?dl=0 More to come soon.