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VisualSnowTheNetherlands

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VisualSnowTheNetherlands last won the day on November 20 2014

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  1. Hello everyone, I would like to share my SPECT-scan result with you. I was able to get it in Italy because of a friend of mine who also has Visual Snow who works as a nurse in Di Venere hospital in Bari. I was unable to get it in Holland because of several reasons. Link: http://youtu.be/b3Dtrt5pJ7U My symptoms are: visual snow, after images, trails, tinnitus, hyperacusis, light beams that shoot away from objects, blue field entoptic phenomenon etc. PS www.visualsnow.eu is still under construction. Ben
  2. 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 I cannot give a consultation over the internet. You can, however, 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 (yet) available 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 them. However, I know of an optometrist colleague who experiences unremitting visual snow reportedly as a result of transcranial magnetic stimulation of the occipital cortex. She now wears coloured lenses to reduce (but not eliminate) the scintillations. Please let me know whether the snow is more obvious on some backgrounds than others. You may wish to try the following. Obtain a wide range of differently coloured papers and observe the snow. Is it more obvious on some colours than others? If so, I may be able to help you with coloured lenses. There is now evidence (attached) that the appropriate colour can reduce overactivation in the visual part of the brain. There is also a little evidence that coloured filters can help some patients with multiple sclerosis, another possible cause of visual snow Sincerely, Arnold Wilkins."
  3. Indeed what Visual said. I need to add like I did in the interview: I stopped seroquel and fluvoxamine very slowly and after a few weeks of not taking any of those two medications or any medication in general, I tried lamictal. So there was a washout period.
  4. 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.
  5. 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 http://nl.linkedin.com/pub/gerard-jan-alderliefste/25/595/328 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 eyeonvision: http://eyeonvision.org/ (?) , there is not really a deadline but the sooner the better of course. Will respond as soon as possible Ben
  6. Indeed and well summarized. Also important to address that people with this condition should support the research by funding so Goadsby and Schankin can continue with the next phase of the research and hopefully set up successful treatment strategies. Quote: "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://www.ncbi.nlm.nih.gov/pubmed/24816400 Based on this several treatment approaches are possible and we are working on this right now… But as you see, Dr Goadsby and I are working now in Europe and we need to establish structures first. So please understand that this might take some time… Many greetings from Munich! Christoph"
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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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