VisualSnowTheNetherlands

Phase 2 research: Visual Snow Syndrome/HPPD/lingual gyrus

17 posts in this topic

Hello everybody, 
 
Simply put we need your help: 
 
Thanks to the research of Dr. Schankin and Prof.Goadsy supported by the http://eyeonvision.org/ they have discovered the location inside the brain where our visual symptoms come from.  
 
See:  
 
"We have published a major study on the description of the syndrome: http://www.ncbi.nlm.nih.gov/pubmed/24645145 

 
 One other paper on the location of the disease in the brain has just been published electronically:http://onlinelibrary.wiley.com/doi/10.1111/head.12378/full  
 
As you can see the: http://eyeonvision.org/ was mentioned and thanked in both publications.  
 
Dr Schankin." 
 
 Location: 

"The lingual gyrus of the occipital lobe lies between the calcarine sulcus and the posterior part of the collateral sulcus; behind, it reaches the occipital pole; in front, it is continued on to the tentorial surface of the temporal lobe, and joins the parahippocampal gyrus.[2]" 
 
The only problem we have now is that Dr. Schankin and Dr. Goadsby need more funding to progress their research further, which hopefully will lead to future treatment strategies. We need more money. This condition isn't being funded by the government as you all know. 
 
That is why we have started  a gofundmepage. 
 
See link: http://www.gofundme.com/visual-snow    
 
Money can also be donated directly to the: http://eyeonvision.org/  
 
PLEASE help US and YOURSELF, by supporting this research by donating.  
 
I would like to add: I conducted an interview with Dr. Abraham by Skype with the question if HPPD and Visual Snow Syndrome are the same disease. He think so. I first have to edit the interview and get permission to put it on my YouTube channel. I will post it here as well. 

EDIT: Visual Snow Syndrome means: seeing visual snow AND the added symptoms: tinnitus, palinopsia, photophobia, trails, blue field etc. 

 
EDIT: Interview with Dr. Abraham: Interview Dr. Abraham: 

 
Thanks for considering my request.  
 
With kind regards, 
 
Ben Wigmans www.visualsnow.nl & YouTube:visualsnow1   
 
  
 

  

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VS is the same that HPPD?, did Dr. Abraham say that?

 

I doubt it, because VS cant's be the same that HPPD, VS is a sympthon of HPPD, but not the same. HPPD is a disorder, and a disorder is a group of symptoms, and vs is one of them, plus palinopsia (tracers), tinnitus, macropsia, sensitivity to light ...

 

Futhermore, I think it's a good cause and hopefully you get lucky, but do not think you should say things to encourage people with HPPD with no solid arguments, like saying it's the same disease.

 

with respect, José

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Dear José, I think you don't understand what I meant 

 
Visual Snow Syndrome has the same symptoms of HPPD. The Visual Snow is one symptom of HPPD and Visual Snow Syndrome. 
 
Notice the word: "syndrome" added to Visual Snow. That has been done by Dr. Schankin and Prof. Goadsby to encompass the multitude of symptoms, that comes with the seeing of the static aka "the visual snow". 
 
Symptoms such as tinnitus, palinopsia, trails, blue field, halos,blur,ghosting etc etc.  
 
You confuse the symptom of seeing static with the condition that is called: Visual Snow Syndrome.  

 
"VS is the same that HPPD?, did Dr. Abraham say that? I doubt it,"   
 
He implied after my question that Visual Snow Syndrome is the same as HPPD. 
 
Because we all share the same symptoms: visual snow, tinnitus, palinopsia, trails. shaky vision, spots etc
 
You will also see in the interview that Dr. Abraham closes with endorsing The Eye on Vision. 
 
I am at work Monday and I will edit the interview and if I get a permission I will put it on my channel and link it here as soon as he gives me the "okay".    
 
I have this condition for a long time and also conducted two interview with Prof.Ferrari and Prof.Goadsby that are on my YouTube channel, I take this condition very seriously.  
 
With kind regards, 

Ben Wigmans
 

www.visualsnow.nl & YouTube:visualsnow1   

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oh sorry, forgive my discourtesy

 

I did not know that visual snow syndrome and HPPD share all that lottery symptoms, and thought it was just publicity ... I guess this disease makes oneself irritated and angry. 
 
You can report on the progress of that investigation?
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No problem and I understand completely, it's a very troublesome disease.. 
 
I hope to have edit the interview of Dr. Abraham tommorow on my work and then I hope to be able to put it online and e-mail it to Dr. Abraham to get his permission to put it on public.  
 
 Yes I will keep everyone up to date. I hope the interview with Dr. Abraham will convince people to donate for the second phase of this condition.  
 
This already very interesting, this is the description of the condition: hhttp://www.ncbi.nlm.nih.gov/pubmed/24645145  
 
And this is the publication where they have found the location of the brain where our symptoms come from: http://onlinelibrary.wiley.com/doi/10.1111/head.12378/full 
 
With kind regards, 
 
Ben 

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I guess thanks for your understanding. 

 

It would bother to ask you if you have HPPD or vs? 

 

I tried to log on page and I can not, well I guess it will be in English, so I come back another time to look at that article. 

 

about Dr. Abraham and interview, do you work on something related with press?

 

best regards

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Of course, no worry. I don't know to be honest.  
 
I have visual snow since 2002 after a migraine aura. It took me eight years to find out what I had. When I found out the term "Visual Snow" in 2010 by "googling" it late at night, I tried different medications, which didn't do nothing for me, but the last medication: clonazepam, which is benzodiapine, might have made it worse. 
 
 Like the other medications it didn't do anything for me. I slowly tempered off clonazepam, after that I got severely dizzy and sick and after that I slowly got my other symptoms: blue field (which just disappeared), tinnitus, trails, palinopsia and photophobia. I didn't took a high dose nor was I on it for long nor did I stopped abruptly.  
 
When I look at the symptoms of people who got it by drugs and compare it to the people who got the same symptoms by medication or migraine it's always the same: visual snow (the static), after images, trails, blue field, palinopsia and even derealisation. I always thought HPPD and Visual Snow Syndrome are the same condition caused by a wide arrange of factors.  
 
About the press, I wish I could have that option..  
 
I did made a video about The Eye on Vision:

. 
 
 
 About the publications, try these links:  
 
 http://www.ncbi.nlm.nih.gov/m/pubmed/24645145/ and: http://onlinelibrary.wiley.com/doi/10.1111/head.12378/full .  
 
Best Regards, Ben 
 
PS I hope to edit the interview tommorow, my coworker was sick. 

Here is a picture of the interview: https://www.dropbox.com/s/m4bzocaar7nbrrq/received_m_mid_1407772109409_4f9388ebcb568c2746_0.jpeg 
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Hey that is so great ! Unfortunately tho there are many different types of hppd from different styles of hallucinogenic drugs

But I think the usual style hppd from LSD looks rlly promising in this study :)

What about hppd from dissociative drugs like salvia..ibogaine etc ? The ones that involve dp and dissociation etc ? And what about the other hppd symptoms like star bursting, breathing walls, morphing and intensified colours ?

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Hey Missjess! I don't know if there are different types of HPPD. What I could understand from Dr. Abraham interview is that there are many causes to HPPD.  
 
I really hope so indeed! 
 
I have been an admin long the Visual Snow Facebook and just recently re-joined because I wanted to contribute to the research. About those symptoms you mention: many people have them whiteout drug abuse. Especially starburst which I have myself.  
 
I have just send the interview to Dr. Abraham hope to share it with you all tomorrow night 
 
Ben  
 

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Welkom :)

 

Good to see things are moving forward with your much appreciated efforts, and thank you for taking the time to explain the much misunderstood differences and overlappings between HPPD and VS(S). Not sure I entirely agree with it, but that doesn't really matter much, as both conditions clearly share much in common; therefore any data from either diagnosis will be useful. Would be interesting to see both conglommerate I guess, but then of course; where does one draw the line? Where would DPD/DRD fall in? What about cognitive disruptions? Just something to provoke thought; not necessarily seeking an answer currently personally.

 

Please remind me; was it hypo- or hypermetabolism of the Lingual Gyrus? And did they mention whether it was any specific metabolism? Also, I recall there being a lateral specifier, though I can't recall whether it was right or left.
Because I don't know what research Goadsby have in mind, and despite the valuable data, it would of course be worth entertaining the possibility of pursuing (theoretical) treatment based off of this observation (putting it bluntly: to cut to the chase). I'm sure there are ways to locally alter the metabolisms of the lingual gyrus somehow; perhaps that deserves a focus as well? In no way is this intended to devalue any of the studies performed so far, yet having your fate rest in someone else's hands entirely requires a lot of faith.

Hmm, I just watched your interview with Dr. Abraham. Many thanks to both of you; it was very informative and it will especially serve as a great resource to those new to the conditions. And I must confess; he is correct about the necessity of a more accurate understanding of the pathophysiology involved.. Though I'd think given the current data it's still possible to derive potential treatments, which then may or may not be implemented clinically depending on invasiveness, finances, etc.

Anyhow, I'm tired, so off to bed. Sorry if it was a bit deranged, and best wishes to you!

 

P.S. Just checked; apparently I can only donate via credit card.. Is there a way to pay with PayPal or BitCoin? If not, I'll have to do so later. Is there a deadline?

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Hi and thank you/dankjewel! 
 
Yes indeed both conditions share tremendous similarities, which still makes me personally think it is one and the same condition, but triggered by different means.  
 
I don't know if you are familiar with the Visual Snow Facebook? It has over 2400 members now, many people describe symptoms that many people would label as HPPD symptoms including derealisation/depersonalization/brainfog, but never touched any illicit drugs.  
 
I myself never took illicit drugs but several months ago I woke up with severe derealisation. I have to add it was a horrible time, full of stress anxiety and an increase of visual snow symptoms and headaches, which I mention in the interview.  
 
I had the luck to talk to Dr. Alderliefste also a HPPD expert in The Netherlands. 
 
See:  
 
"Gerard Jan Alderliefste | LinkedIn 

Bekijk het (Nederland) professionele profiel van Gerard Jan Alderliefste op  
LinkedIn. LinkedIn is ... Physician in addiction medicine, specialist HPPD and  
drug-induced depersonalization. Singer in ... Doctor of Medicine (MD), medical  
school." 
 
We talked about derealisation/depersonalization and he told me something interesting. Many times derealisation/depersonalization comes together with severe anxiety. For instance: people in war have a high chance of getting derealisation/depersonalization because of the constant and continuous stress on their psyche.   
 
He described as an (flawed) escape mechanism for the brain. This phenomenon can appear after continuous stress from the visual symptoms and the stress of it. That might be for many people with visual snow syndrome/HPPD.   
 
About your question if it was hypo- or hypoermetabolism of the Lingual Gyrus. I only know it's mostly the right Lingual Guyrus and other parts might be involved 
 
I am going to post your question in the Visual Snow Facebook group and tag some people who have a neurological background who can answer your question more in-depth.   
 
About possible future treatment, I have a feeling that might involve neuromodulation or TMS.  
 
See quote:  
 
"The promising response of tinnitus sufferer to new approaches using neuromodulation (Vanneste and De Ridder, 2012a, b ) thus might support the use of these techniques in patients with visual snow. Similary, concentration problems, irritability or lethargy could be a part of the biology of visual snow." 
 
See: Visual Snow a disorder distinct from persistent migraine aura.  

Thank for your the compliment about my interview! Dr. Abraham is a great man and very nice and concerned about people who suffer from this condition(s).  
 
Hope you had a good sleep!  
 
I think there are more options to donate on the site of the eyeonvisionhttp://eyeonvision.org/ (?) , there is not really a deadline but the sooner the better of course. 
 
Will respond as soon as possible :)  
 
Ben 

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Hypermetabolism

After adjusting for typical migraine aura, comparison of 17 “visual snow”

patients with 17 age and gender matched controls showed brain hypermetabolism in the right lingual gyrus (Montreal
Neurological Institute coordinates 16-78-5; kE = 101;ZE = 3.41; P < .001) and the left cerebellar anterior lobe adjacent to the left
lingual gyrus (Montreal Neurological Institute coordinates -12-62-9; kE = 152; ZE = 3.28; P = .001).

The voxel-wise [18F]-FDG PET group comparison
evidenced hypermetabolism of the right lingual
gyrus (Montreal Neurological Institute coordinates:
16-78-5; cluster size kE = 101; ZE = 3.41; P < .001) and
a trend for the anterior lobe of the left cerebellum
(Montreal Neurological Institute: -12-62-9; kE = 152;
ZE = 3.28;P = .001) (Figure) in patients withVS when
compared with healthy controls after adjusting for
the presence of typical migraine aura.

When analyzed visually, this area seems to extend
laterally and rostrally to the left lingual gyrus (Figure)
possibly reflecting the relatively low spatial resolution

of PET. Such bilateral hypermetabolism in the
lingual gyrus might be a signature of hyperactivity
of the visual system in VS.Interestingly, the same
area showed hyperperfusion in [15O]-water PET
during high luminous stimulation in migraineurs26
and during low light stimulation in spontaneous migraine attacks indicating relevance for the migrainous
phenomenon photophobia.

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Thanks for the swift reply!

 

I agree; transcranial neuromodulation poses great oppertunities in terms of treatment, although alas so far only ®TMS has been explored in DPD/VS as far as I know.

 

There are various forms of NIBS (non-invasive brain stimulation) that elicit much higher precision than TMS, and therefore offer a superior chance of specifically targetting the affected areas. Being that the lingual gyrii are deeper that the superficial cortical layer, preferably a level of specificity would be attained that has depth-control. IIRC, TUS (transcranial ultrasound stimulation) offers this, but I may be mistaken in that. Either way, the relatively low specificity of TMS could conflict with any improvements; take for instance the study regarding the right Temporo-Parietal Junction, where the neuromodulation may have extended beyond the targetted region, altering both temporal and parietal regions that also govern perception. The latter is just conjecture at most, but does offer a potential reason why the results with TMS so far have been marginal.

 

By the way; under the Research Articles sections of this site I've added plenty of articles relating to transcranial modulation of the visual modalities and my thoughts thereof, should you be interested. Neuronal excitability has been confirmed to be able to be lowered via these methods; a seemingly recurring marker of visual distortions. Perhaps such methods alter metabolism as well.

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Of course :) 
 
You really know a lot about TMS and neuromodulation. I can follow what you are saying but not when it becomes very specific. . I am glad you take an interest in my post and can help me try to understand this TMS and neuromodulation! I could check out those posts but I think it will go over my head..  
 
I think this will also trigger your interest:  
 
''Petra Brennan Oscar I got in touch with Profesor Wilkins last year and asked him for help, this is his reply Dear Petra 
cannot give a consultation over the internet. You canhowever, contact your GP and ask him to refer you to me. I do not charge for such referrals, but unfortunately any treatment with coloured lenses is not (yetavailable on the NHS. 
Your problem is known to medical science and the UK expert is Dr Gordon Plant. Dr Plant referred me patients with persistent migraine aura for trials of coloured glasses and regrettably I was unable to help themHowever, I know of an optometrist colleague who experiences unremitting visual snow reportedly as a result of transcranial magnetic stimulation of the occipital cortexShe now wears coloured lenses to reduce (but not eliminatethe scintillations. 
 
Please let me know whether the snow is more obvious on some backgrounds than othersYou may wish to try the followingObtain a wide range of differently coloured papers and observe the snow. Is it more obvious on some colours than othersIf so, I may be able to help you with coloured lenses 
There is now evidence (attachedthat the appropriate colour can reduce overactivation in the visual part of the brainThere is also a little evidence that coloured filters can help some patients with multiple sclerosis, another possible cause of visual snow Sincerely, 

Arnold Wilkins. 

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Thank you very much for your effort so far!

I would say that this study is the best latest achievement for those with VS/HPPD which gives me a little of hope.

I just donated 100 bucks and I'm afraid that's all I can do now since I had to quit my job because of this mess.

38.000 in 2 months isn't bad at all. Do you have any idea on how Eye on Vision will proceed when the initial amount of 50.000 dollars has been reached?

And I wonder if this thread shouldn't be moved and pinned in the general forum for a wider attention? It's very close to 50.000.

You are stating that the government doesn't do anything about this, or isn't involved in any research. But why is that? Shouldn't a tenthousand sufferers be enough for any government to take action and find some what of a solution now when we know what the issue is?

Best Regards,

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It took Ben 8 years to get diagnosed. Similarly, those fortune among us who have found this site and received an official diagnosis have probably taken all of us years upon years as most physicians simply are not aware of VS/HPPD. It takes a lot for a physician to step out of their comfort zone and actually do a bit of research on something they don't know. The knee jerk reaction is a misdiagnose and the wrong RX which is the precursor to all sorts of problems. The key is advocacy. The person suffering is unaware because the physician is unaware which makes family and friends powerless to help. Advicscy is the key and the eye on vision is a great resource to concentrate our efforts. If there is a membership (need to check) become one, make a donation, sit with family and show them the part of the brain that is affected, explain that the syndrome can be triggered by a variety of factors, not just drugs. Advocacy begins and ends with you. It's your condition, your respsibility so the next time you go to the doctor for 15 minutes (pathetic) use that time to share whatever you can regarding this condition so you can best be helped and raise the level of awareness within the medical community as well. Donating $50 per month to the fund.

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