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Go Fund Me for Cure for VS


Blunderbuss89
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It's the best stuff and our only hope that's out there right now. HPPD and Visual Snow Syndrome sufferers have the same anomalies in an advanced brain scan. What works for them will probably work for us. I've already donated a bunch to that page and I do advise anyone that's interested in a medical approach to do so too. The only thing that differs HPPD and Visual Snow Syndrome is that you took hallucinogenic drugs and others will judge you for it.

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It's the best stuff and our only hope that's out there right now. HPPD and Visual Snow Syndrome sufferers have the same anomalies in an advanced brain scan. What works for them will probably work for us. I've already donated a bunch to that page and I do advise anyone that's interested in a medical approach to do so too. The only thing that differs HPPD and Visual Snow Syndrome is that you took hallucinogenic drugs and others will judge you for it.

 

Are you talking about the scan that demonstrated abnormalities in the lingual gyrus? If so, as far as I am aware, no 'core' HPPD subjects have had that test (unless on their own accord). The 17 people who had the scan fit a very restricted profile - none of which (I believe) included use of drugs prior to onset.

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Are you talking about the scan that demonstrated abnormalities in the lingual gyrus? If so, as far as I am aware, no 'core' HPPD subjects have had that test (unless on their own accord). The 17 people who had the scan fit a very restricted profile - none of which (I believe) included use of drugs prior to onset.

 

Yes, that's right. How come you sceptisism? We don't know whether someone had HPPD or Visual Snow because it's easy to lie about it. I got a lot of help from denying use of drugs. Without it, I'm afraid I wouldn't.

We don't either know if Visual Snow Syndrome is the actual illness and it's just the drugs that induce it. It's the exact same symptoms, they even have DP/DR and brainfog and can see geometrical patterns.

I believe our problem is an over-stimulated left cerebral lobe and the hyper-metabolism in the lingual gyrus. Hopefully I will run some tests here in Sweden and we'll see if I get the same results as that study.

I do also believe that many people deny use of drugs and just blame it on something else, that could be visual snow syndrome as well. Maybe every one of them in the study was psychonauts back in the days, who knows? ;)

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Yes, that's right. How come you sceptisism? We don't know whether someone had HPPD or Visual Snow because it's easy to lie about it. I got a lot of help from denying use of drugs. Without it, I'm afraid I wouldn't.

We don't either know if Visual Snow Syndrome is the actual illness and it's just the drugs that induce it. It's the exact same symptoms, they even have DP/DR and brainfog and can see geometrical patterns.

I believe our problem is an over-stimulated left cerebral lobe and the hyper-metabolism in the lingual gyrus. Hopefully I will run some tests here in Sweden and we'll see if I get the same results as that study.

I do also believe that many people deny use of drugs and just blame it on something else, that could be visual snow syndrome as well. Maybe every one of them in the study was psychonauts back in the days, who knows? ;)

 

You said "HPPD and Visual Snow Syndrome sufferers have the same anomalies in an advanced brain scan." I'm not saying those with HPPD wouldn't show the same abnormalities - more that we don't know because it hasn't been demonstrated yet. Whilst the symptoms are (often) very similar, we can't say that we both have the same abnormalities in a type of brain scan - because that hasn't been shown yet by anyone (as far as I am aware), let alone been published as research. The researchers carried out a survey of approx 200 people (if I recall correctly) with the types of symptoms we have, and then chose the research subjects from a select group of individuals who all had a similar history and similar symptoms. People could have lied, but at this point no one knew what the researchers were up to so really there was no need to lie. In any case, we don't know. I think the scans took place 1.5-2 years after the original survey.

 

Would HPPD patients show that same abnormalities? That's a question I'd really like answered - but we'd need at least a few people with an obvious case of HPPD to have that scan done to definitively say yes.

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You said "HPPD and Visual Snow Syndrome sufferers have the same anomalies in an advanced brain scan." I'm not saying those with HPPD wouldn't show the same abnormalities - more that we don't know because it hasn't been demonstrated yet. Whilst the symptoms are (often) very similar, we can't say that we both have the same abnormalities in a type of brain scan - because that hasn't been shown yet by anyone (as far as I am aware), let alone been published as research. The researchers carried out a survey of approx 200 people (if I recall correctly) with the types of symptoms we have, and then chose the research subjects from a select group of individuals who all had a similar history and similar symptoms. People could have lied, but at this point no one knew what the researchers were up to so really there was no need to lie. In any case, we don't know. I think the scans took place 1.5-2 years after the original survey.

 

Would HPPD patients show that same abnormalities? That's a question I'd really like answered - but we'd need at least a few people with an obvious case of HPPD to have that scan done to definitively say yes.

 

Yes, I agree with you. It's better to be sure than to speculate in anything. Well if you take me and Pinionlel for example, we both have anomalies in the left temporal lobe. That's where the derealisation and recognition of things and people, to understand expressions and emotions sits. That's definately a part of HPPD. It has been improved with Keppra. I will do another sleep EEG in 2 weeks, to confirm if it has been reduced or if it's the same.

I will ask to get the exact same scan as the study too, to see if anything is shown.

 

Didn't the user Merkan do an QEEG? What was his results? And didn't the guy from the netherlands that works for eyeonvision do a SPECT-scan with similar results?

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Yes, I agree with you. It's better to be sure than to speculate in anything. Well if you take me and Pinionlel for example, we both have anomalies in the left temporal lobe. That's where the derealisation and recognition of things and people, to understand expressions and emotions sits. That's definately a part of HPPD. It has been improved with Keppra. I will do another sleep EEG in 2 weeks, to confirm if it has been reduced or if it's the same.

I will ask to get the exact same scan as the study too, to see if anything is shown.

 

Didn't the user Merkan do an QEEG? What was his results? And didn't the guy from the netherlands that works for eyeonvision do a SPECT-scan with similar results?

 

A very specific test was used ([18F]-2-fluoro-2-deoxy-Dglucose positron emission tomography), aka a PET scan testing the metabolism of glucose. It would be great if someone with HPPD could have this test carried out to see if the results could be replicated, 'hypermetabolism in the right lingual gyrus and the left cerebellar anterior lobe adjacent to the left lingual gyrus.' http://www.itcrowd.nl/wp-content/uploads/2014/07/The-Relation-Between-Migraine.pdf

 

QEEG studies on HPPD patients have demonstrated 'control differences mostly involving temporal and left parietal scalp regions' (http://www.ncbi.nlm.nih.gov/pubmed/8912957). There is disinhbition in the cerebral cortex. The founder of this forum (David) showed the same results with a scan. More recently Abraham says, '

 

Regarding Ben (the guy from the Netherlands) - I don't think he has a history of drug use. He didn't have the same scan but did show abnormalities - see here from 1.56: 

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Yep, that's the one I will ask my neurologist to try to get for me. Easier said then done probably but I'll give it a shot. The lingual gyrus is within the visual cortex. It's possible that it could be another part that's involved when it comes to HPPD, but as the symptoms are identical, I believe it's the same illness. It have to be proven though, however I believe that this research is great for us with HPPD as well. It's the closest that we will get to find more about these symptoms and a possible treatment.

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