Visual-Snow-An-Internet-Diagnosis

Visual Snow An internet diagnosis between psychiatry and neurology

Editors Ben and Gerard Wigmans

April 2011 (First version)

Editorial Information: Ben Wigmans (25-1-1987), +0031 06-46736838, e-mail: [email protected] Gerard Wigmans (father, same address) 06-39251407 e-mail: g.wigmans @ tudelft.nl M. Zeldenruststraat 21, 3123 SP Schiedam, Netherlands +0031 010-4704843 Cover design: Chris Wigmans, e-mail: [email protected] 2

Contents

Foreword page 4 1. 1 Introduction page 5 2. Visual Snow page 6 3. Websites Visual Snow page 9 4. Persistent Migraine Aura page 11 5. Hallucinogen Perception Disorder Persist page 13 6. Tinnitus page 17 7. Palinopsia (after images) page 19 8. Floaters and blue field entoptic phenomenon page 22 9. American Survey on Visual Snow page 25 10. Dutch Survey on Visual Snow page 34 11. Patients with Normal Visual Snow have equivalent input noise levels page 77 12. Positive Visual Phenomena: Classification, clinical profile and a scheme page page 78 for diagnosis

Foreword

An Internet diagnosis is often difficult relationship with a medical consultation. Medical professionals are increasingly confronted with patients who are research based and diverse sources to be able to compile their own diagnosis. Google search terms are released on the Internet. A wealth of information with a contradictory result. It offers some guidance, but it also leads to confusion. Individual experiences and are equivalent between the results of scientific research. Platforms on their own experiences with those of others facing, often without its own history and context to take. Medication based on individual examples tried without scientific research has taken place. People with Visual Snow, desperate, experiment. The internet and internet diagnosis medication flee.

But what do you do if you have Visual Snow, if you already know that the complaints on the Internet already have received this label, an Internet unknown to medical diagnosis. Moreover, a phenomenon that neither the inside nor in neurology and psychiatry seem to be placed. Thus, peer Visual Snow between two stools.

But in 2010 Ben was relieved that he is one of the many discussion forums that he discovered "Visual Snow" had, and now that he was to share experiences with others. A quest to break 'between psychiatry and neurology.

Visual Snow because no recognized illness, treatment providers say the council is not confronted with that one case that appears to be unique. Well, that's not the case. It is important that people with visual snow to form a front, are strong together and Visual Snow as serious "disease" recognized in Medical Sciences.

This information booklet to the first bridge, between peers themselves and their surroundings: between peers and medical professionals as a preview on the road helped. A brief commentary on Visual Snow may include useful for first visits, it is our experience. For any work is done for further diagnosis and research. May this information help with the problem folder Visual Snow on the research agenda.

Ben and Gerard Wigmans April 2011, Schiedam

1. Introduction

This information folder has brought together diverse information. It starts by giving a concise explanation of Visual Snow. Further orientation and floor can be found via the websites where these topics are summarized below. People with Visual Snow usually have other symptoms that fit the same spectrum as oorsuis (tinnitus), afterimages (after-images / palinopsia), floaters and blue field entoptic phenomenon. Relating to Visual Snow (Chapters 2 and 3) is often Persist Hallucinogen Perception Disorder (HPPD) (Chapter 5) said. In HPPD is often there has been drug use. In a sense it is a collective name of all the secondary symptoms people with Visual Snow too. Visual Snow differs from the so- called Persistent Migraine Aura (PMA) as explained in Chapter 4. In chapters 6 to 8 we look deeper into individual complaints of all the secondary or Visual Snow. HPPD. It should be emphasized that further (actual) information on the internet and the information about them in constant motion, especially the many discussion forums where experiences are exchanged.

Following the presentations of the above or labels. Internet diagnoses we have the results of a U.S. Survey on Visual Snow acquired (Chapter 9). To our knowledge, the first comprehensive attempt to map out the phenomenon. The survey is based on 275 respondents, but tens of thousands of people suffer from visual snow, this are the many 'hits' on the discussion forums conclusive enough.

Following the format of the American Survey, we have our own survey done among 15 other peers Visual Snow in the Netherlands that Ben has met over the Internet (Chapter 10). We will continue to supplement this survey. Some heard on the road for the first time that their complaints were not alone and that there is even a name (diagnosis) these complaints have been given over the Internet. The surveys are questions as any event or activity underlies getting visual symptoms, which examinations and consultations are done and whether a diagnosis is made, the use of drugs and therapies, how to reduce these problems, etc.

As an introduction to each of the surveys are the most striking results mentioned. But both surveys show the same striking picture, namely the search that has been made by various medical specialists, the variety of drugs have been tried, the variety of type of research has been done. It thus provides an exchange of diseases, sharing what the cause is possible, exchange of results of medical consultations, therapies, sharing of medication with its positive and negative effects, etc.

In chapters 11 and 12 are two scientific articles. The first shows that Visual Snow an intrinsic problem in the brains, the other article proposes how to classify different diagnoses. The articles further show that much research to be done. As yet, the information gathered here is important so that not all (both companion as a medical specialist) again the same road to sound cumbersome, it provides the reference information folder this (somewhat) to avoid.

We opted for the English text fragments which are found almost exclusively on the Internet is included alongside the Dutch explanations.

3. Websites Visual Snow

1. A good explanation of Visual Snow including references can be found on Wikipedia.

http://en.wikipedia.org/wiki/Visual_snow

Also see chapter 2 from this document.

2. Another explanation about Visual Snow can be found on http://www.visualsnow.com 3. For an simulation to see what Visual Snow is like there is a YouTube clip with more than 20.000 hits. http://www.thevisioncommunity.com/index.php?option=com_content&task=view&id=78&Itemid=171 http://www.youtube.com/watch?v=l4KbBmZD2Qs

4. Examples about the experience of Visual Snow, and how they are expressed in different languages.

Little dictionary of Visual snow or static. Language Term English Visual Snow, Visual Static, TV like static Dutch Visuele Sneeuw, Sneeuw zien, Oogruis German Augenrauschen Hebrew sheleg vizuali, ritzud vizuali

http://www.migraine-aura.com/content/e27891/e27265/e42285/e42288/index_en.html

5. The website ‘Eye on Vision’ raises funds for research about Visual Snow. It has done so since 2008. http://eyeonvision.org/visual-snow.html http://eyeonvision.org/about-the-eye-on-vision-foundation.html

6. The website http://thosewithvisualsnow.yuku/com is created for people with Visual Snow. The member base is rather large. The following subjects are just some examples which can be found on the site:

- Discussion about Visual Snow and exchanging information - Medical tests and diagnoses - Possible helpful information - Research information and publications

7. Information about Visual Snow and the exchange of experiences.

http://porillion.wordpress.com/pma-visual-snow-faqs

Other Websites:

http://www.thevisioncommunity.com

http://www.visualsnow.com

9 http://www.myspace.com/visualsnow http://www.migraine-auro.org/content/e26537/index_en.html

5. Hallucinogen Persisting Perception Disorder

We have used two resources for our Explanation about HPPD. The explanation of dr. Henri Abraham from 17 december 2008.

Dr. Abraham is one of the most known and active researcher on the area of HPPD. http://www.drabraham.com

A research paper written by Tacovan and Erowid from November 2009 which is formed from several facts and sources. http://www.erowid.org/psychoactives /health/hppd/hppd_faq.shtml

6. Tinnitus

A good definition of tinnitus is: sound perception which no external source. In other words, a sound that is perceptible only to the hearer. Sometimes a specialist or audiologist determine that the hearing organ is active (objective tinnitus). Far more often it is not medically determined ("subjective tinnitus). For someone who has the disease, it makes little difference.

We speak of subjective tinnitus when someone perceives a sound without any identifiable source is. You could say that there are noises that are not in fact. Still, tinnitus is a real observation and not hallucination or thought. The sound may occur in different keys: hissing, wheezing, whistling, hissing, humming, buzzing. It can vary from hard to soft, from high to low and be heard continuously or intermittently. In some cases, tinnitus can also be seen the specialist. In this case there is objective tinnitus, which in principle perception of a sound with an identifiable source in the body. Sometimes objective tinnitus are treated with surgery. Subjective or objective, the noise in the head is all too real.

Medically speaking, subjective tinnitus (yet) to heal. There is much in the last 20 years research which has shown that tinnitus is related to communication between the ear and the brains. In the brains takes place the translation of the meaning of sounds. The ear and the auditory nerve play a role in the supply of stimuli to the brains and the brains own editing and processing it into a perception or experience. It is assumed that a tinnitus (at) this phenomenon of editing and processing. Tinnitus is not a disease or disorder but a symptom: a consequence of disturbance in the excitation transfer to the brains or the brains in the process.

The name comes from the Latin tinnitus. "Tinnitus aurium" which is full of medical jargon. That means something like: ringing in the ears. In Dutch, tinnitus also known as 'tinnitus'. Actually this is not a good name. Tinnitus is not in the ear, but rather in the head where the brains perceive the nerve impulses. The name 'tinnitus' is also true for another reason. Whiz is just one of the sounds you can only see when you have tinnitus. The noise can take many forms. Of arrhythmic banging to wailing sirens. Or a loud noise of ringing bells. It can also vary the pitch and intensity.

Some forms of treatment To date there is no cure for the majority of tinnitus patients is effective. Treatment options have a medical, audiological and psychological basis. In Germany, Austria and Switzerland, however, is that for decades used in acute tinnitus treatment in an infusion. It is an infusion therapy containing the active ingredients an anti-inflammatory (prednisolone) and a means to better blood flow through small blood vessels in the auditory organ (pentoxifylline). This treatment should begin as soon as possible after the onset of tinnitus are applied, preferably within 14 days. The chance for improvement is greatest, and up to 80%. The tinnitus may disappear or decrease by this treatment. Rest is important during this infusion therapy. Tinnitus was longer than 2 to 3 months earlier than is called chronic tinnitus and the infusion therapy is no longer meaningful. It is important to as quickly as possible to a physician to go in case of an audio trauma. If the tinnitus lasts longer than several days should be investigated. Some forms of tinnitus can be treated while others are untreatable and permanent. To sleep in such circumstances can sometimes be necessary to avoid silence and to sleep with music. There may be a tinnitusmaskeerapparaat worn, which produces a sound masking the hiss or squeal pushes away. The forms of treatment are specifically aimed at the causes. In almost all forms, some antidepressants such as nortriptyline (Pamelor) and amitriptyline (Elavil), certain tranquilizers such as alprazolam (Xanax) and light propranonol as beta-blockers (Inderal) and rest of escape. In any type of tinnitus masking and habituation to a positive contribution. For tinnitus caused by noise trauma, stress, panic, exhaustion, anxiety and depression can resolve the emotional causes through effective psychotherapy works. Hypnotherapy is particularly positive trials Damage to the cochlea by ototoxic medication (this is indicated by a temporary stop to taking aspirin), the effect of therapy the least.

Websites www.hulpbijoorsuizen.nl / about-tinnitus.html http://nl.wikipedia.org/wiki/Tinnitus http://www.ncbi.nlm.nih.gov/pubmed/11791935

17 http://www.ncbi.nlm.nih.gov/pubmed/18094653 http://www.erasmusmc.nl/kno/patientenzorg/knoklacht/Oorklachten/1951521/

Other information Tinnitus Telephone (from 9.00 to 17.00): 0800-TINNITUS (0800-8466488) For general questions or to be connected with a companion. Dutch Association of Hearing: 030 2617616 / 030 2617677 text phone www.nvvs.nl

9. American survey about Visual Snow

The survey gave 275 responses with half coming from the United States and the other half from around the world. From the survey the following was found out:

The most problems are ‘static or Visual snow in the dark and during daylight’, ‘floaters’ and ‘persistent after-images’. These problems are also the outcome of the Dutch Survey.

The use of medicine was also assessed: the use of medicines didn’t have any positive effect on the symptoms. Many alse have headaches.

To diagnose the symtons and problems there we’re visits to several specialists: - Eye specialists - Neuropathies - Psychiatrist - Acupuncturists

10. Dutch Survey on Visual Snow

In February 2011 we are following the format of the American survey done a survey among its 15 other U.S. peers in the Netherlands that Ben has come through the Internet. A clear pattern, the results can not be drawn. Nevertheless, a number of cases. On the origin of Visual Snow are three reasons given, namely drug use, genetic predisposition and abrupt migraine attacks. But often there seems no clear reason to give. Most have carried out extensive research. For most was blood and eye position. In all cases it appeared that everything was fine. Some have called a VEP study carried out. This is an investigation into the functioning of the optic nerve and associated nerve fibers. Only one individual was an anomaly.

One of the respondents provides some information about her research that may be of interest to mention here already. It refers to the phenomenon of a so-calledPhosphene. This is an entoptic phenomenon characterized by the experience of seeing light without light actually entering the eye. The word phosphene comes from the Greek words phos (light) and phainein (to show). Phosphenes are flashes of light, often associated with optic neuritis caused by movement or sound. Phosphenes may be directly caused by mechanical, electrical or magnetic stimulation of the retina or visual cortex, and through a random firing of cells in the visual system. Phosphenes were also reported by meditators (usually nimitta), people who go for long periods without visual stimulation (also known as film of the prisoner) or those using psychedelic drugs. The optic path is the connection between the eye and facial brains. If this job is poorly constructed or damaged, visual information from the eye not are transmitted to the brains causing problems with vision may occur.

All respondents peer-Visual Snow-emphasize the importance of targeted research and stress the need for exchange of experiences and discussion among peers in the Netherlands and Belgium.

Exploratory Research Visual Snow Survey: People in Netherlands Preparers and Gerard Ben Wigmans, Schiedam dated. 2-2-201

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Nr. 1

Details 1. Name: Ben Wigmans 2. Date of birth: 01/25/1987 3. E-mail: [email protected] 4. Phone: 06-46736838 5. Address: 1921 M. Zeldenruststraat 3123 SP Schiedam 6. Fill date 4-2-2011/actualisering 03/29/2011

Questions about your own history with Visual Snow 1. How long have you been? Since 2003 2. Assumed cause At the age of 14 severe migraine attack, minutes can not see through dots suddenly!; Early signs U.S. 3. Describe the progress and changes in symptoms Since April 2011 aggravated the complaint, since December 2010 and later afterimages tinnitus, but what is diminishing 4. Therapies Several of Riagg and BAVO

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No Not clear, possibly genetically related problems seen in the family and as I said, migraine attacks in about March 2003: nothing to see by dots that suddenly arose. In summer 2003 something that looked like a psychosis, according to medics. Provisional diagnosis. Under Erasmus MC in December 2003-March 2004.

Research and consultations 1. Eye doctor: yes 2. ENT: Yes, okay

3. Psychiatrist: from 2003 4. Neurologist: Vlietland Hospital 2008-2010 5. Alternative medicine (eg acupuncture): Yes, acupuncturists, homeopathic doctor, reiki 6. Migraine specialist: no 7. Blood: with regularity, no abnormalities 8. MRI scan: Yes, 2x no abnormalities 9. Functional MRI: no 10. VEP: Yes, 2x irregularities. In March 2011, 3rd VEP afd.neurologie at Erasmus MC. Again deviation

11. EEC: yes?? 12. CAT scan: no 13. Self-complementary. In April 2011 through epidural spinal fluid will be collected for research.

Is there a diagnosis and if so, how is it defined? Erasmus MC.maart 2004, a coarse description of various diagnoses in the little yellow clear. Second opinion by prof dr R.S. Kahn UMC Utrecht in July 2008, (small) adjustment diagnosis. In December 2009 found itself on the Internet. I am relieved because no one took seriously for more.

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental e.d.) 3. Internet (google, discussion forums, websites): yes 4. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow Day 2. Visual Snow in the dark 3. Persistent afterimages (Persistent after-images): since October 2010 4. Change of color images (color vision changes): no 5. Tinnitus (oorruis): Yes, but less than few months ago 6. Self-complementary

Indicate what symptoms you are suffering most: 1. Hardest: Visuals Snow 2. As the second hardest: afterimages 3. The third hardest: tinnitus

What medications do you use now and you used before? 1. Antidepressants: fluvoxamine 2. Anti-psychotic: seroquel (trying to build it). Moemneteel bad one tablet of 0.25 mg 3. Anti-epilepsy: different attempts: topiramate, acetazolamide; valporate; lametoline, Rivotril, dekapine. (Dekapine is reduced) 4. Etc..: Oxacepam

What drugs are (specific) required for your problems Visual Snow? The anti-seizure medication. Currently dekapine reduced.

Describe how you respond to medication 1. No effect: yes 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

Have you benefited from certain therapies? 1. Cognitive therapy: mixed 2. Individual sessions: mixed 3. Alternative medicine. In March 2011 started acupuncture. 4. Self-complementary

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms: I can hardly 2. The use of relaxation techniques: no 3. Change of light intensity 4. Many sleep: yes 5. Self-complementary

How does it affect your life? 1. School: stopped 2. Work: First volunteer work, not currently (UWV benefit) 3. Relationship: none 4. Perspective 5. Suicidal Thoughts: yes 6. Self-complementary

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow: Yes 2. Engaging in specific research: yes 3. Exchange of experiences: yes 4. Self-complementary

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Nr. 2

Data (one can possibly. Anonymously filled in) 1. Name: LH 2. Date of birth: 1991

Questions about your own history with Visual Snow 1. How long have you been? approximately 4 years 2. Presumed cause, psychological problems and drug use 3. Describe the progress and changes in symptoms, as time progressed, it became worse. With the extra sleep was bad. First, some problems of flicker (snow image), and greater perception of floaters, and later the visual trails there. 4. Therapies, medication: citalopram (antidepressant) and Seroquel (antipsychotic). Prescribed by mental health care, according to my physical and psychological complaints.

What event or activity you think is the basis for getting visual symptoms? 1. Drugs, yes, certain parts of damaged brains 2. Mental stress; yes 3. Migraine; for me but for others it might be 4. Something else, underlying psychological problems 5. No

Research and consultations 1. Eye-doctor, at about five different ophthalmologists been unable to find anything, just floaters. Field Test done with contrast test, and other possible tests. 2. Audiologist, hearing test done because of tinnitus, nothing came out. 3. Psychiatrist, I walk there now 4. Neurologist, an ophthalmologist at the UMCG wanted me to refer. 5. Alternative medicine (eg acupuncture) 6. Migraine Specialist 7. Blood tests 8. MRI 9. Functional MRI 10. VEP; done nothing materialized. 11. EEG; did, nothing came out. 12. CAT scan 13. Self-complementary

Is there a diagnosis and if so, how is it defined? The last doctor in the UMCG said that it WAS his psychological problems, and does not think it is neurological. So I was not referred.

How did you find that your "diagnosis" Visual Snow was?

1. Internet (google, discussion forums, websites), for years many have searched, and I am 100% sure that this visual snow / hppd is.

What are your current symptoms of Visual Snow? 2. Visual Snow day yea 3. Visual Snow in the dark yea 4. Persistent afterimages (Persistent after-images): yea 5. Change of color images (color vision changes), no 6. Tinnitus (oorruis) yes 7. Self-complementary, visual trails, derealization.

Indicate what symptoms you are suffering most: 1. Hardest; derealization 2. As the second hardest, visual trails 3. The third hardest, snow image

What medications do you use now and you used before? 1. Anti-depressants, now citalopram, 40 mg per day. 2. Anti-psychotic, Seroquel, 20 mg at bedtime. 3. Sleep problems, temazepam, months had, but which is actually a strip may. Just detoxed them.

What drugs are (specific) required for your problems Visual Snow? None.

Describe how you respond to medication 1. No effect

Have you benefited from certain therapies? 2. Cognitive therapy, I still get. 3. Individual interviews, I have at present, remains poor. 4. Alternative medicine 5. Self-complementary

How are you trying to reduce problems Visual Snow? Trying to fool myself by saying that the physical, avoid bright spaces, large rooms and large groups of people avoid

How does it affect your life? 1. School participation problems, concentration problems. Likely to quit school and dagtherapie. 2. Work, ideally avoiding 3. Social, ideally all alone sitting on the couch day without doing anything, very quiet, social phobia, do not come out, depression.

Do you think people have to join forces Visual Snow? all three following things;

1. Recognition of Visual Snow / HPPD! 2. Engaging in specific research 3. Exchange of experiences

I also want to say that I think it has to do with serotonin levels, I have genetic predisposition for low serotonin production. Drugs like ecstasy is addressing this area in your brains also, so I think this combination was the cause. This I would like to see research come to that part of the brains.

Here's some information from my own research, what possibly could have to do (this is already largely reflected in the introduction of our survey editing): A phosphene is an entoptic phenomenon characterized by the experience of seeing light without light actually entering the eye. The word phosphene comes from the Greek words phos (light) and phainein (to show). Phosphenes are flashes of light, often associated with optic neuritis caused by movement or sound. Phosphenes may be directly caused by mechanical, electrical or magnetic stimulation of the retina or visual cortex, and through a random firing of cells in the visual system. Phosphenes were also reported by meditators (usually nimitta), people who go for long periods without visual stimulation (also known as film of the prisoner). Of those using psychedelic drugs.

The optic path is the connection between the eye and facial brains. If this job is poorly constructed or damaged, visual information from the eye are not well communicated to the brains causing problems with vision may occur. The nerve is also in the neck, due to neck problems. It may also be such that an incorrect position of a vertebra or even the whole brain (relative to the cervical vertebrae), the brainstem upset. This has many implications for the basal stimulus transfer. These symptoms are similar to symptoms that people with a strong burnout. Among other tinitus is a common symptom but also taking hyper aesthetic phenomena (such as light and sound sensitivity) where a number of people newly overwritten. When the autonomic nervous system is disrupted it affects the balance. A chronic lack of sleep can lead to a reduced sensitivity of serotonin receptors in the brains. Serotonin, a neurotransmitter involved in mood, sleep, emotion, appetite and sexual activity. Serotonin also causes a feeling of happiness. Sleep deprivation can cause depression by decreasing serotonin.

Antidepressants provide little reduction in depressive symptoms as the cause a serotonin deficiency, but a problem with the serotonin transporders and various other immune disturbances. In an unbalanced Th1/Th2 balance, there is an inflammatory response between IL-6 (cytokine) and serotonin transporters (SERT). Serotonin serotonin transporters are proteins that transport within the synapsruimte of neurons. Serotonin transporters for serotonin re reclycleren

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40 nr. 3

Data (one can possibly. Anonymously filled in) 1. Name: JC 2. Date of birth: 1986

Questions about your own history with Visual Snow 1. How long have you been? 2 years 2. Assumed cause: 10 months after tinnitus is visual snow started sheerers phenomenom (Blue field entoptic phenomenon) vergergerd. 3. Describe the progress and changes in symptoms of visual snow flakes also vitreous, sheerers phenomenom (moving not only flies but also on grass, blue sky or the road just as light) and sometimes suffer from image retention 4. Therapies: No

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Another thing: stress could well cause might be got rid of all my 14 years old vitreous flakes and 2 weeks later and got sheerers phenomenom than eight years later, only visual snow occurred

Research and consultations 1. Eye doctor: yes 2. ENT: no 3. Psychiatrist: Yes from August 2010 4. Neurologist: yes okay MRI and EEG abnormalities do not even VEP test 5. Alternative medicine (eg acupuncture): no 6. Migraine specialist: no 7. Blood: yes everything is in order 8. MRI-scan: OK 9. Functional MRI 10. VEP: OK 11. EEC: OK 12. CAT scan: not done 13. Self-complementary

Is there a diagnosis and if so, how is it defined? No diagnosis, am born handicapped (wrong ie rechtarm = deformed and have left only three fingers instead of five) so thought to be genetic, however after 3 years and half genetic research is still no deviation by genetics professor in Leuven found.

How did you find that your "diagnosis" Visual Snow was? 1. Arts

2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites): yes 4. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow day: no little 2. Visual Snow in the dark: yes 3. Persistent afterimages (Persistent after-images): no 4. Change of color images (color vision changes): no 5. Tinnitus (oorruis): yes 6. Self-complementary: anxiety are known for (is actually a neurotic disorder is difficult for me away)

Indicate what symptoms you are suffering most: 1. Hardest: vitreous flakes 2. As the second hardest: sheerers phenomenom 3. The third hardest: Tinnitus and visual snow

What medications do you use now and you used before? 1. Anti-depressants: yes Serlain 2. Anti-psychotic: no 3. Anti-epilepsy: no 4. Etc..: No

What drugs are (specific) required for your problems Visual Snow? I take no for mediciijnen

Describe how you respond to medications: 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

Have you benefited from certain therapies? 1. Cognitive therapy: no 2. Individual interviews: no 3. Alternative medicine: no 4. Self-complementary

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms: does not help, but you ignore it 2. The use of relaxation techniques: helps 3. Change of intensity: is often dark but that is more vitreous flakes 4. Many sleep: helps if you are well rested 5. Self-Complete:

How does it affect your life? 1. School: I student university: learning is more difficult but, i. U.S. does not bother me there 2. Work: / 3. Relationship: none 4. Perspective: hopefully not worsen the 5. Suicidal Thoughts: yes but not because of U.S. would merely do for that rotten a. vitreous flakes and tinnitus 6. Self-complementary: anoying especially when people are in dark surroundings, you'll recognize them hard and at night when you leave they often take a long time before your eyes adapt to environmental

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow: Sure, it's not halllucinatie 2. Engaging in specific research: less than or 3. Exchange of experiences: Always nice to know that you are not alone. 4. Self-complementary

Nr. 4

Data (one can possibly. Anonymously filled in) 1. Name: SB 2. Date of birth: 1990

Questions about your own history with Visual Snow 1. How long have you been? 2. Around 12 I realized my first snow of the visual characteristics, as well to describe noise in a TV whose connection is not optimal. Maybe I already had, but when I was only aware of, at that age rationality begins to develop / create. 3. Assumed cause 4. Etiology of U.S. I am not sure. I have theorized several reasons: 5. Genetic chronic inflammation / infarction micro around / in (tertiary) primary Corte. 6. Kind of genetic disorder which sort of makes the screen refresh rate (in Hz, in which images so smooth need overflow) higher. But unconsciously, in which U.S. patients, a type of neural inprinting arises in the visual cortex or retina, making the field "naflikkert. This would be in sync with the age that most U.S. patients develop as a sort of incubation period are needed. Most kids watch TV and computer because early (hence also of recent decades, and has never been described before) 7. Hypersensitivity to light? 8. Describe the progress and changes in symptoms 9. Symptoms are EXACTLY like this picture http://www.migraine- aura.org/site/content/e27891/e27265/e42285/e42288/e57536/e57690/Papanague_Visual_snow_vision_small_4 90_en.bmp \ 10. Only the negative after-images are not as bad as on this picture. 11. Symptoms are much more clearly when I go to a bright light background look like the blue or cloudy sky. Oddly enough I see it very well when it is dark, as I sleep. I have not (consciously) feel it is progressive. 12. Therapies 13. Would not know, the cause must first be known.

What event or activity you think is the basis for getting visual symptoms? 1. Drugs (never used) 2. Mental stress (perhaps contributing factor, but not the cause) 3. Migraines (not affected) 4. Something else: Genetic cause with the flickering of TV / computer screens. Perhaps useful to some U.S. patients with expression microarray assays to perform -> detection of differences in genetic expression. 5. No

Research and consultations 1. Eye doctor around my 17th I think I've been to an ophthalmologist at the hospital of Hoorn. Nothing found, perfect eyes, except that more precipitation than usual glass braided. This is still cause for floaters? I also but that's something else, I think even then not so bad. I have no more trials to do, because I do nothing about these symptoms on the internet I could find. 2. ENT X (X = no / negative / not applicable) 3. Psychiatrist X 44

4. Neurologist X 5. Alternative medicine (eg acupuncture) X 6. Migraine specialist X 7. Blood tests X 8. MRI X 9. Functional MRI X 10. VEP X 11. EEC X 12. CAT scan X 13. Self complement X

Is there a diagnosis and if so, how is it defined? No.

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Internet, I recently found something about last year, as well, just think called visual snow in the symptoms. Furthermore, it is an appropriate name I think. It is striking that relatively many U.S. people, but really know nothing about in the scientific literature found on PubMed. 5. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow Day 2. Just as in http://www.migraine- aura.org/site/content/e27891/e27265/e42285/e42288/e57536/e57690/Papanague_Visual_snow_vision_small_4 90_en.bmp \ 3. Oddly enough I really only suffer from visual snow and especially the "mosquito's', the rest only when I look at the sky, as previously described. 4. Visual Snow in the dark 5. Mosquitos. 6. Persistent afterimages (Persistent after-images) 7. Not extremely seriously affected, just as I am very tired, or when the air is very bright. 8. Change of color images (color vision changes) 9. No problem, no mark only that one eye 'warmer' colors can be observed as the other. Is there maybe nothing to do, but I report it anyway. My left eye sees more red, orange, while my right is more a bleak vision. 10. Tinnitus (oorruis) 11. Also affected, but only about once a month if I can not sleep, I'm really aware of. 12. Self-complementary

Indicate what symptoms you are suffering most: 1. Hardest: Visual snow (noise) of the image, which I've used it twice already. 2. As the second hardest: The mosquito's in the picture. 3. The third hardest: After images.

What medications do you use now and you used before? 1. Anti-depressants X 2. Anti-psychotic X 3. Antiepileptic X 4. Not specific medicines or neurological diseases / disorders had to my knowledge.

What drugs are (specific) required for your problems Visual Snow? None.

Describe how you respond to medication 1. No effect X 2. Some medications have a temporary beneficial effect on certain symptoms X 3. Hard to say. My visual symptoms come and go. X

Have you benefited from certain therapies? 1. Cognitive therapy group X 2. Individual interviews X 3. Alternative geneeswijzenX 4. Self complement X

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms. Especially this one, and are not aware of it. 2. The use of relaxation techniques X 3. Change of intensity X 4. Not much sleep that I can go to sleep on purpose, but it helps when I am rested. U.S. is also, I feel worse when I'm extremely tired. 5. Self-complementary

How does it affect your life? 1. Perhaps a lesser school merger 2. Work Reduced concentration 3. Relationship 4. Perspective Historically it was difficult with it, but I have learned to live by now. It remains very annoying from time to time, as it is for me feel worse, or if I am aware of. 5. Suicidal Thoughts X 6. Self complement X

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow 2. Also, it seems important when lobbying for research be carried out on visual snow. The symptoms are not life threatening, but very annoying.

3. Engaging in specific research 4. Good plan, but there must be clear however, research must be done, and whether there is a method that U.S.

46 can detect or the like. 5. Exchange of experiences 6. No need to contact next forums and email. Work or support groups in my opinion not really necessary. 7. Self-complementary

______

Nr. 5

Data (one can possibly. Anonymously filled in) 1. Name: EV 2. Date of birth: 1991

Questions about your own history with Visual Snow 1. How long have you been? Around since my 13th 14th 2. Assumed cause I think I got it after I've had oogmigraine. 3. Describe the progress and changes in symptoms Constant flickering since I got it, and think it's worse. 4. Therapies Holistic medicine

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No Stress and migraine could be a cause.

Research and consultations 1. Eye doctor -> yes 2. ENT -> no 3. Psychiatrist -> no 4. Neurologist -> no 5. Alternative medicine (eg acupuncture) -> Yes, Holistic medicine 6. Migraine specialist -> no 7. Blood test -> no 8. MRI scan -> no 9. Functional MRI scan -> no

10. VEP -> yes 11. EEC -> no 12. CAT scan -> no 13. Self-complementary 14. Perimetry -> yes

Is there a diagnosis and if so, how is it defined? No ocular deviation objectively. (Eye Hospital).

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) -> Internet 4. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow Day -> yes 2. Visual Snow in the dark -> yes 3. Persistent afterimages (Persistent after-images) -> no 4. Change of color images (color vision changes) -> no 5. Tinnitus (oorruis) -> no 6. Self-complementary

Indicate what symptoms you are suffering most: 1. Hardest-> a 24 hour constant flicker 2. As the second hardest -> sometimes stressful 3. The third hardest

What medications do you use now and you used before? 1. Anti-depressants 2. Anti-psychotic 3. Anti-epilepsy 4. Etc.. 5. None

What drugs are (specific) required for your problems Visual Snow? No-> they could not find anything

Describe how you respond to medication 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

4. No medication taken

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual interviews 3. Alternative medicine 4. Self-complementary Kwa eyes

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms -> Can not 2. The use of relaxation techniques -> sitting at the computer allows me to "relaxing" 3. Change of light -> no 4. Many sleep -> yes 5. Self-complementary

How does it affect your life? 1. School -> Study is usually very difficult 2. Work -> not yet, I'm afraid to function normally 3. Relation -> is just a focal point 4. Perspective -> see no vision 5. Suicidal Thoughts -> enough 6. Self-complementary

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow -> YES 2. Engaging in specific research -> YES 3. Exchange of experience -> YES 4. Self-complementary It must be recognized! It can upset your life into something positive

Exploratory Research Visual Snow Survey: People in Netherlands Preparers and Gerard Ben Wigmore, Schiedam dated. 2-2-2011

Data (one can possibly. Anonymously filled in) 1. Name: Jesse

2. Date of birth: 18/06/1991 3. E-mail: [email protected] 4. Phone: 0614953578 5. Address: Amsterdam

Questions about your own history with Visual Snow 1. How long have you been? 6 months 49

2. Alleged Smoking cannabis causes and possible drugs (Ecstasy) 3. Describe the progress and changes in symptoms, "I see a night and almost all noise. If it is a dark room, I see almost nothing but snow. 4. No Therapies

What event or activity you think is the basis for getting visual symptoms? 1. Drugs

Research and consultations

No, only on the Internet.

Is there a diagnosis and if so, how is it defined? No

How did you find that your "diagnosis" Visual Snow was? 3. Internet (google, discussion forums, websites)

What are your current symptoms of Visual Snow? 1. Visual Snow day but a bit lighter on white surfaces are quite severe. 2. Visual Snow in the dark 3. Persistent afterimages (Persistent after-images) 4. Tinnitus (oorruis)

Indicate what symptoms you are suffering most: 1. Visual hardest snow in the dark. 2. As the second hardest Ater images, many stars in the sky and floaters 3. The third hardest tinitus What medications do you use now and you used before?

None 4. How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms 2. Many sleep 3. Few computing

How does it affect your life? 1. School - A little less, sometimes it is crazy 2. Not working 3. Relationship - Sex is less fun in the dark Do you think people have to join forces Visual Snow? 3. Yes

______

Nr. 7

Data (one can possibly. Anonymously filled in) 1. Name: L 2. birthdate: 1994

Questions about your own history with Visual Snow 1. How long have you been? No idea since elementary school I think. 2. Assumed cause: If Only I Knew! 3. Describe the progress and changes in symptoms at night is a little clearer but it is always present 4. Therapies: No

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No 6. No, I think it's just a mistake between the brain and eyes or something.

Research and consultations 1. Eye doctor: "I went, nothing found. 2. Ear specialist 3. Psychiatrist 4. Neurologist 5. Alternative medicine (eg acupuncture) 6. Migraine Specialist 7. Blood tests 8. MRI 9. Functional MRI 10. VEP 11. EEC 12. CAT scan 13. Self-complementary

Is there a diagnosis and if so, how is it defined?

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-Complete: Through the Internet Search. I came out on topics and the Wiki page.

What are your current symptoms of Visual Snow? 1. Visual Snow Day 2. Visual Snow in the dark 3. Persistent afterimages (Persistent after-images) 4. Change of color images (color vision changes) 5. Tinnitus (oorruis) 6. Self-Complete: Everything except the fourth. Number 5 has everyone if he'll notice I believe. I do not suffer from number 5 but when I start to watch at night, when it's quiet then it is present. But I must try to position so. I glare as much as anyone I think.

Indicate what symptoms you are suffering most: 1. Hardest: Visual Snow 2. As the second hardest: 3. The third hardest 4. I have a go and I need glasses but Floaters are fun.

What medications do you use now and you used before? 1. Anti-depressants 2. Anti-psychotic 3. Anti-epilepsy 4. Etc.. 5. Nothing so I'm living proof that it is not medicine or drugs have to lie!

What drugs are (specific) required for your problems Visual Snow?

Describe how you respond to medication 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual interviews 3. Alternative medicine 4. Self-complementary

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms 2. The use of relaxation techniques 3. Change of light intensity 4. Many sleep 5. Self-complementary: I sleep well, I'm not sure if it is worse when I sleep less as usual. I have lately not so much affected because I did not pay attention. You can do it all the time in your mind but I am one happy.

How does it affect your life? 1. School 2. Work 3. Relationship 4. Perspective 5. Suicidal Thoughts 6. Self-complementary: In reading can be quite annoying. But suicidal thoughts? Please, it is a disease of the eyes. No terminal illness or something.

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow 2. Engaging in specific research 3. Exchange of experiences 4. Self-complementary 5. I would rather not think too much but I'm really curious now what the cause and what is more: How you can take off!

______

Nr. 8

Data (one can possibly. Anonymously filled in) 1. Name: DD 2. Date of birth: 1985

Questions about your own history with Visual Snow 1. How long have you been? 2. September 8, 2010 3. Assumed cause 4. Unconscious stress? After two panic attacks in one day that seemed to come out of nowhere it came and it was impossible 5. Describe the progress and changes in symptoms 6. Visual snow is 24 hours a day. With stress and headache seems to be worse. If I am quieter it seems to be somewhat less. 7. Therapies 8. On February 7, 2010 I start with individual cognitive therapy at the GGZ Friesland in Leeuwarden. Psychologist noted a panic disorder, hypochondriasis and some derealization symptoms.

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No The only reason I can think of is unconscious stress. In 2010 the deceased friend of my mother, my brother was heavily indebted himself in a drunken brawl in his arm cut three months since I know that my mother has terminal cancer. Migraine could also be good but when the snow started I had no visual migraine. Did after the panic attack, but frequent headaches (almost daily) and I had a migraine since. It was very intense with colored auras. But I think perhaps unconscious stress and anxiety were the trigger for the panic attack and further complaints.

Research and consultations 1. Eye doctor: no 2. ENT: no 3. Psychiatrist: Psychologist: Yes, since November 4. Neurologist: February 28, 2011 I go to a neurologist at the Medical Center Leeuwarden 5. Alternative medicine (eg acupuncture): no 6. Migraine specialist: no 7. Blood: Yes, it was perfect. No abnormalities. Thyroid not. 8. MRI: no 9. Functional MRI: no 10. VEP: no 11. EC: No 12. CAT scan: no 13. Self-complementary 54

Is there a diagnosis and if so, how is it defined? I still went to the neurologist so I have no diagnosis. Diagnosis of psychologist: panic disorder, derealization and hypochondriacal complaints.

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-complementary

Through the internet I came through keywords such as snow and oogruis sites on visual snow. This was useful given the illustrated exactly what I experienced.

What are your current symptoms of Visual Snow? 1. Visual Snow day: yes 2. Visual Snow in the dark, yes, much worse than during the day 3. Persistent afterimages (Persistent after-images): Yes, constantly 4. Change of color images (color vision changes): no 5. Tinnitus (oorruis): Yes, at certain times

6. Tense neck muscles 7. Very often headaches 8. Derealization 9. Dizziness 10. Seeing Double 11. Can not set focus on an object (eyes) 12. Did jaw snap (voltage?) 13. General fatigue 14. Backache 15. Concentration Loss 16. Read words that are not there (confusion)

Or 6 to 16 deal with the visual snow I do not know. But it seemed useful to mention. Because if they are caused by anxiety and stress it might be that the visual snow also caused by stress and anxiety. I often do not feel really relaxed. In particular, the derealization is terrible.

Indicate what symptoms you are suffering most: 1. Derealization 2. Headache 3. Visual snow

Actually I have a lot of burden of all complaints, but the derealization is really terrible. The headaches that frequently arise are also very annoying and visual snow is acceptable, but just annoying. Especially since reading an obstacle. White walls are not to see the beautiful blue sky is a play of visual snow and floaters.

What medications do you use now and you used before? 1. Paracetamol (sometimes at the huge headache) 2. After the panic attack Oxazepam prescribed, give me some rest time but did nothing with the visual snow 3. After the panic attack, because omeprazole prescribed heartburn I really had worked well 4. Valerian Drops had was totally useless

What drugs are (specific) required for your problems Visual Snow? None.

Describe how you respond to medication 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

No specific drugs affected the visual snow, I can not say.

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual interviews 3. Alternative medicine 4. Self-complementary

Individual interviews (initial interviews) were good for me to talk but it rectified the visual snow and other physical symptoms. Gave my head a little peace is only temporary because complaints are plentiful.

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms: it is impossible, they are too intense there. I ignore them just to continue with life. But they are not gone. Do not feel alone there in my life to deteriorate. 2. The use of relaxation techniques: no, not more relaxed 3. Change of intensity: no, does not have much sense 4. Many sleep: sleep so well, as food and drink, but unfortunately no effect. Notice that sometimes too much sleep can make worse. 5. Self-complementary

How does it affect your life? 1. School: training course now. Takes more energy. Concentration loss is present, headache irritates my work. But with more effort and strength it is reasonable. But as fun as a normal man, I have absolutely not. 2. Work: no work at the time, studying full-time HBO Journalism 3. Relationship: work hard for my relationship, sometimes I feel sad and desperate. Having an effect. Together more respect for each other, not give up and continue with life. Complaints not centrally leave. Am sometimes absent, which is annoying. I try to work but is not always easy. 4. Perspective: I sometimes fear that the symptoms disappear or a nasty neurological cause. But try to stay sober

56 and solution thinking, not to drown in a world of despair. 5. Suicidal Thoughts: No, never. Is not a solution even though life is very heavy. I continue to hope to keep forever ... 6. Self-complementary

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow: Yes, if it really is a neurological problem it seems handy for people (like me) who suffer from it. 2. Engaging in specific research: very important. Do not know how many people in this world walking around but it is very heavy. Especially since I almost anyone with visual snow has also derealization. And in the booklet of DSM IV symptoms one of the most unpleasant psychological problems imaginable. 3. Exchange of experiences: can really help you feel less alone. Dutch would also like to see this talk. 4. Self-complementary

______

Nr. 9

Data (one can possibly. Anonymously filled in) 1. Name: D 2. Date of birth: 1990

Questions about your own history with Visual Snow 1. How long have you been? Since 2008 about 2and half years 2. Assumed cause: I think drugs, partydugs 3. Describe the progress and changes in symptoms Initially very severe panic panic attacks, was not in my own body suddenly everything looked different, is diminished, sometimes a bit frantic moments, and occasionally suffer from after images, sometimes unreal feeling. 4. Therapies: Have no therapies had got nothing done, try to live, do not think a particular therapy can be solved by me.

What event or activity you think is the basis for getting visual symptoms? 5. Drugs 6. Mental stress 7. Migraine 8. Something else 9. No

I think the cause anyway with drugs raises and probably something with migraines? Some people have done neither, and still have visual snow? Sometimes there is no explanation.

Research and consultations 1. Eye doctor: Yeah, optician and everything was fine and no abnormalities examined in the OMC Amsterdam and there appeared to be no exceptions, everything was 100% OK ... 2. ENT: No 3. Psychiatrist: No and no need for it, because almost nobody knows not what it is, I think they can not help me. 4. Neurologist: No 5. Alternative medicine (eg acupuncture) No 6. No migraine specialist 7. Blood Yeah, I did, everything was fine .. 8. MRI No. 9. Functional MRI No. 10. VEP Yeah, was fine 11. EEC No 12. No CAT scan 13. Self-complementary

Is there a diagnosis and if so, how is it defined?

There is no diagnosis. I only suffer from glandular fever.

How did you find that your "diagnosis" Visual Snow was? 1. Arts The doctor said I had an eye condition called vitreous haze (floaters) 2. Agencies (Mental Health, Mental Health e.d.) No 3. Internet (google, discussion forums, websites) Through the internet I found out that it was quite another, by other peers who also described the same symptoms as me. 4. Self-complementary

What are your current symptoms of Visual Snow? 7. Visual Snow Day Yeah got it 24 / 7 every day to see spots. 8. Visual Snow in the dark Jah in the dark is the worst I can not see anything, just a lot of noise. 9. Persistent afterimages (Persistent after-images) I sometimes when I look at something 10. Change of color images (color vision changes) No 11. Tinnitus (oorruis) I suffer from when I'm sleeping, a ringing in my ears. 12. Self-complementary

Indicate what symptoms you are suffering most: 4. Hardest: Visual snow 5. As the second hardest Dizziness 6. The third hardest Oorruis

What medications do you use now and you used before? Have no drugs, because I fear the bend at the symptoms worse.

What drugs are (specific) required for your problems Visual Snow? No one. They examined me and they said they could do nothing because they thought I had glasvochttroebeling.

Describe how you respond to medication I do not use drugs

Have you benefited from certain therapies?

1. Cognitive therapy: Maybe, with people who have it too.

2. Individual interviews: Maybe 3. Alternative medicine: Yeah if it works 4. Self-complementary

How are you trying to reduce problems Visual Snow? I try to minimize the Internet to find, by that I mean the information. I try to lead a normal life I'm going to school and doing an internship, but it is very heavy, I do not work because I just can not handle that mentally there.

How does it affect your life? 1. School, it also affected my school because I think I should do 2 times as much trouble as a normal person because I'm dizzy all day and do not feel.

2. Work: I do not I go training, but that is very heavy, I am doing an internship from 8 to 4:30 and I have a lot of trouble, but the harder I work the less I think that I have visual snow . But a regular job I would not have there.

3. Relationship: Yeah I have a raltie of 5.5 years and my friend knows that I have eye problems just so he does not understand and thinks it is not so bad, he can not explain, but it also affected my relationship now and then because sometimes I just have no energy for anything, but I try not to show and I am actually more than I can in one day, I want to function as normally as possible.

4. Suicidal Thoughts: In the beginning I have it hard with it, because I thought it never would be fine with me've never felt so bad feeling and was just back to normal can see as I always did, and I did not want in life, which was often thought of hanging, but I realize that there are people who love me and I want to fight for me life is still a little fun for myself, but it remains very difficult ... But thoughts I have now gone. 5. Self-complementary

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow: jaaah! 2. Engaging in specific research: Yeah 3. Exchange of experiences: Yeah 4. Self-complementary

______

Nr. 10

Data (one can possibly. Anonymously filled in) 1. Name: ED 2. Date of birth: 1991

Questions about your own history with Visual Snow 1. How long have you been? since 2008 2. Presumed causes no idea 3. Describe the progress and changes in symptoms At first it struck me that I saw a type of bacteria in the air, this is worse, I see it all around me and disturbs my focus of vision. This is also with closed eyes. This was accompanied by tinnitus. 4. Therapies na

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No

The use of drugs, the symptoms worsened. The difference in use and after use is clearly noticeable. It is not about hallucinogenic drugs (MDMA, except where a portion of the brains get into MDA, is what is hallucinating.) But to amphetamine and cocaine and alcohol.

Research and consultations 1. Eye doctor 2. Ear specialist 3. Psychiatrist 4. Neurologist 5. Alternative medicine (eg acupuncture) 6. Migraine Specialist 7. Blood tests 8. MRI 9. Functional MRI 10. VEP 11. EEC 12. CAT scan 13. Self-complementary

Is there a diagnosis and if so, how is it defined?

No, psychiatrist could not help me 61

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow Day 2. Visual Snow in the dark 3. Persistent afterimages (Persistent after-images) 4. Tinnitus (oorruis) 5. Difficulty reading, losing the focus of the eyes.

Indicate what symptoms you are suffering most: 1. Loss of focus during reading 2. Visual Snow 3. Tinnitus

What medications do you use now and you used before? 1. ADD: Before Ritalin, Concerta now.

What drugs are (specific) required for your problems Visual Snow?

Not applicable

Describe how you respond to medication

Not applicable

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual talks with Yahoo and other people with HPPD psychologist / Visual Snow 3. Alternative medicine 4. Self-complementary

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms, not think 2. Change in light intensity often helps 3. Sleep, a good day / night cycle has a positive effect and reduces symptoms 4. Minimize alcohol (this strengthens the intense symptoms). 5. Enough exercise has a beneficial effect.

How does it affect your life? 1. School: almost impossible to learn long texts 2. Work experience of loss of focus (eyes) 3. Perspective: demotivating 4. Suicidal Thoughts: yes 5. Powerlessness: yes 6. Mental stress: yes 7. Difficulty reading: yes

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow 2. Engaging in specific research 3. Exchange of experiences 4. Further information about HPPD medical staff / Visual Snow

______

Nr.10

Details 1. Name: NB 2. Date of birth: 1992

Questions about your own history with Visual Snow 1. How long have you been? 2. Ongerveer 3-4 years 3. Assumed cause 4. I do not know it was just sudden. 5. Describe the progress and changes in symptoms 6. Interference in the image and aura making text difficult to read 7. Therapies / What event or activity you think is the basis for getting visual symptoms? 1. Something else 2. No

Research and consultations 1. Eye doctor: yes 2. ENT: No 3. Psychiatrist: No 4. Neurologist: / 5. Migraine specialist: no 6. Blood: No 7. MRI: No 8. Functional MRI: no 9. VEP: No 10. EC: No 11. CAT scan: no 12. Self-complementary

Is there a diagnosis and if so, how is it defined? I myself discovered by other asking if they saw it through much searching the internet discovered what it was.

How did you find that your "diagnosis" Visual Snow was? 1. Internet (google, discussion forums, websites): yes 2. Self-complementary

What are your current symptoms of Visual Snow? 1. Visual Snow Day 2. Visual Snow in the dark 3. Change of color images (color vision changes): no 4. Visual snow When eyes are closed 64

Indicate what symptoms you are suffering most: 1. Hardest: Visuals Snow 2. As the second hardest: aura

What medications do you use now and you used before? 1. no

What drugs are (specific) required for your problems Visual Snow? no

Describe how you respond to medication 1. No effect: yes

Have you benefited from certain therapies?

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms: I can hardly 2. The use of relaxation techniques: no 3. Change of light intensity 4. Many sleep: yes

How does it affect your life? 1. School: I'm just glasses to read 2. Work: / 3. Relationship: none

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow: Yes 2. Engaging in specific research: yes 3. Exchange of experiences: yes

______

Nr. 12

Data (one can possibly. Anonymously filled in) 1. Name: DB

2. Date of birth: 1993

Questions about your own history with Visual Snow 1. How long have you been? Years 2. Presumed cause Drugs / Stress? 3. Describe the progress and changes in symptoms I've been a long time, I first had the idea that perhaps it was only temporary until I happened to read an article on a forum I found out that I am unfortunately a victim. I also constantly suffer from tinnitus that I have about one month or 4 but the last two months it's just gotten worse and starts to feel claustrophobic. The feeling that you never normally see and hear. 4. NO Therapies

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No

Is there a diagnosis and if so, how is it defined?

How did you find that your "diagnosis" Visual Snow was?

1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-complementary

Internet, various forums. Also I have an appointment at 8 february the MHC because of sleepwalking and hallucinations at night recently I was right out there will inquire.

What are your current symptoms of Visual Snow? 1. Visual Snow Day YES 2. Visual Snow in the dark JA 3. Persistent afterimages (Persistent after-images) NO 4. Change of color images (color vision changes) NO 5. Tinnitus (oorruis) YES 6. Self-complementary During the day to do it, then I have more problems with "floaters" with just small ash clouds that float back and forth eye movements. At night it is very, further

Indicate what symptoms you are suffering most: 1. Hardest Oorruis 2. As the second hardest Visual snow 3. The third hardest Floaters

What medications do you use now and you used before? 1. No anti-depressants 2. No anti-psychotic 3. No anti-epilepsy 4. Etc..

What drugs are (specific) required for your problems Visual Snow?

Describe how you respond to medication 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go. NO DRUGS

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual interviews 3. Alternative medicine NO

How are you trying to reduce problems Visual Snow? I know unfortunately 1. Try to ignore the symptoms 2. The use of relaxation techniques 3. Change of light intensity 4. Many sleep 5. Self-complementary 1 Symptoms Ignore

How does it affect your life? 1. School 2. Work 3. Relationship 4. Perspective 5. Suicidal Thoughts 6. Self-complementary

5 No suicidal thoughts but thoughts about how long it still has to go it's like you become trapped in your body. Affected the school. Concentration is difficult. Sleeping is very difficult.

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow 2. Engaging in specific research 3. Exchange of experiences 4. Self-complementary The deal, there are medicines for it, do something about it, it is clear that people are sufferers. It is no illusion, try to deliver us from this ailment.

______

Nr. 13

Data (one can possibly. Anonymously filled in) 1. Name: DC 2. Date of birth: 1988

Questions about your own history with Visual Snow 1. How long have you been? One year or 3 2. Assumed cause. Drugs, especially ecstasy, but also speed and 2cb 3. Describe the progress and changes in symptoms. I have constant problems with oogruis. I see sneeuwerig like on television. Sometimes I see edges around objects. For example to a computer. I really can not focus anymore. 4. Therapies. None

What event or activity you think is the basis for getting visual symptoms? This is due to drug use. Stress and fatigue can increase the symptoms

Research and consultations There is no research done, but am quite sure that I drug-induced Visual Snow (HPPD) won.

Is there a diagnosis and if so, how is it defined? No I have no official diagnosis to make.

How did you find that your "diagnosis" Visual Snow was? Through a site where you can ask questions about your drug use

What are your current symptoms of Visual Snow? 1. Visual Snow in the dark during the day. 2. Orruis I have too. At least the best I can cause a significant ringing in my ears. I just can not say whether this is due to the snow visual or auditory overload.

Indicate what symptoms you are suffering most: I have the most experience that everything I'm behind a snowy haze shrouded. All I see is blurred. My eyes have been found and should be OK according to the optician. Sometimes I see colors in the snowy haze. You should especially consider the colors green and purple. Moreover, reading is very difficult, it's hard to focus, while everything is moving around the letters.

What medications do you use now and you used before? No medication

What drugs are (specific) required for your problems Visual Snow? I take no medication

Describe how you respond to medication I do not use drugs. 69

Have you benefited from certain therapies? I have no therapies

How are you trying to reduce problems Visual Snow? I try to ignore symptoms as much as possible because otherwise you make too much of yourself. The busier you make the symptoms worse. Sleeping is not an option, it does not always work as well.

How does it affect your life? Sometimes it seems the world is unreal, or that some things have not come. The symptoms are constantly present. The complaints get used part, but I would like to see the rings. If you're a bad night's sleep, the symptoms even worse. If you have important things to do can be quite heavy. It is particularly annoying that people can not understand what you have.

Do you think people have to join forces Visual Snow? I think it is good to have recognition and that serious research done. You will live with this condition severely taxed. Now you can only hope that the symptoms diminish over time. This has not happened until now.

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Nr.14

Data (one can possibly. Anonymously filled in) 1. Name: PK 2. Date of birth: 1990

Questions about your own history with Visual Snow 1. How long have you been? Since September 2010 2. Presumed cause after 50 mg of 2cb (psychedelics) 3. Describe the progress and changes in symptoms. First, only U.S. and floaters, tinnitus since August 4. Therapies have

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No For me this is very clear drugs. I have a short peridiode a number of species taken psychedelics (LSD, 2CB, 2CI, 2ct2, paddos), 55 mg 2cb has triggered

Is there a diagnosis and if so, how is it defined? na

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-complementary 71

I went on google search directed to "eye noise", so I had the problem

What are your current symptoms of Visual Snow? 1. Visual Snow Day Yes 2. Visual Snow in the dark so (worse during the day) 3. Persistent afterimages (Persistent after-images) no 4. Change of color images (color vision changes) no 5. Tinnitus (oorruis) yes 6. Self-complementary Floaters

Indicate what symptoms you are suffering most: 1. Most suffer tinnitus 2. As the second hardest visual snow 3. The third hardest -

What medications do you use now and you used before? No medication

What drugs are (specific) required for your problems Visual Snow?

Describe how you respond to medication N / A

Have you benefited from certain therapies? na

How are you trying to reduce problems Visual Snow? 1. Try to ignore the symptoms 2. I just try to sleep 8 hours

How does it affect your life? At the time it affects my life. I can well deal with it and ignore it.

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow Yes 2. Engaging in specific research Yes 3. Exchange of experiences Yes 4. Self-complementary

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Nr. 15

Data (one can possibly. Anonymously filled in) 1. Name: TD 2. Date of birth: 1987

(As long as my personal data / information without that I know anything about something published is no problem)

Questions about your own history with Visual Snow 1. How long have you been: About 5 to 6 years 2. Assumed cause By drug use. This was an experimental stage for me which I many different types of drug tests in a short time. A mix of: amphetamine and 2c-b (upper and psychedelics) have put on my tie. I was awake the next day and the snow was present. 3. Describe the progress and changes in symptoms 4. The first few days my face was completely covered with orange snow. I realized then still not exactly what this was and thought it would pass with time. I remember I was lying under the sun, so in bright light and foci on my arm was completely orange in color. 5. Therapies 6. Only the doctor if I can call a therapy.

What event or activity you think is the basis for getting visual symptoms? 1. Drugs 2. Mental stress 3. Migraine 4. Something else 5. No

Drugs

Ophthalmologist and a small blood research to check my blood level was at normal.

Is there a diagnosis and if so, how is it defined?

My eyes were fine, same goes for my blood. I continue to wear no glasses and my vision is generally sharp and always been keen.

How did you find that your "diagnosis" Visual Snow was? 1. Arts 2. Agencies (Mental Health, Mental Health e.d.) 3. Internet (google, discussion forums, websites) 4. Self-complementary

After much soul-searching on the internet (visual snow forum hppdonline).

24 / 7 Visual Snow. If you as a patient does not have visual snow. It is not possible to may or may not have visual snow when you have these symptoms. After images: Light present on awakening. In general, little burden. Size Distortions: Objects can morph slightly, by this I mean that it looks like an object, breathes and therefore very light can deform. Here I have virtually no problems because I completely ignore. Movement: I do not know if this movement is called but I could irritate me very much its horizontal and vertical streaks of light that appear to move. This is especially when I am behind my computer (I'm pretty much at my computer ..). Head Pressure: Pressure in head when I sleep too long row. Could ruin my whole day. I have generally little more trouble. A few years back it was worse than my U.S. (this annoyed me more then the U.S. is always present).

Indicate what symptoms you are suffering most: 1. Hardest: Visual Snow 2. As the second hardest: Movement 3. The third hardest: Head Pressure - fuzzy feeling in head

What medications do you use now and you used before? 1. Anti-depressants 2. Anti-psychotic 3. Anti-epilepsy 4. Etc..

Before I got nothing visual snow. The last few years I pretty much use benzodiazepines. It started with a very low dose of diazepam (2 mg) that I got from the doctor. This I tested a week. He gave me the option to experiment a bit as I once mog 4 to 6 mg test to see what it did to my complaints. I know to be honest or not I had to take 3 times a day but I suspect a perdag time because of the long half-life of diazepam. That plea did relatively little to the complaints, so I kind of like a drug is tested, alorazepam. Here I received 0.25 mg of tables,, same story as with diazepam. (Period: 3 years ago roughly equally) A while later I came through again with these resources only at a higher dose (1 mg xanax about I think). Especially with alorazepam my jaw dropped in astonishment at what it did a somewhat higher dose to my U.S. (and the rest of my complaints). The U.S. vanished like snow in the sun and was still only a small supply. For the first time the sky was blue on a sunny day. (Period 3.5 years ago + -) It's not that I've become dependent on time but I bought here and there a bit so I had something lying (eg for presentations etc. I took this and sometimes on weekends). Now about 1 to 1.5 years back I came a man with a wide range of benzodiazepines, including clonazepam. This was a time I used, I noticed very well against all the brand was not very promising (Pakistan, as well Rochi manufacturer). Diazepam was also tested in Pakistan was terribly cheap but I was also very poor quality. It still only had a look what this person had (because of the large supply). Xanax was evident from its very good quality. I'm currently at about 0.5 to 1 mg what I almost daily use. (The reason I'm a lot of benzo's use of the fact that the visual snow you in time may be crazy. You feel depressed, you can not do anything more do you normally could do without this blurring. In short I was done with it, then only one pill per day, it's better than almost every day thinking "cunt the day I started again." At the moment I feel generally pretty good. I think almost no longer about the Visual snow but it's annoying to always having to wean medication.

What drugs are (specific) required for your problems Visual Snow?

See above

Describe how you respond to medication 1. No effect 2. Some medications have a temporary beneficial effect on certain symptoms 3. Hard to say. My visual symptoms come and go.

Some medications have a temporary beneficial effect on certain symptoms. Get on at length tolerance and it still works well only if you want the snow away with what you throw up the dose a person I do not because of the after effects and risk of addiction (I'm now slightly addicted). Also annoying is that you get out of bed a bit difficult, but here I was particularly affected due to high diazepam half-life. I take Xanax when getting up at night the effect is gone. This way it's easier to wake up.

Have you benefited from certain therapies? 1. Cognitive therapy 2. Individual interviews 3. Alternative medicine 4. Self-complementary

How are you trying to reduce problems Visual Snow?

1. Try to ignore the symptoms 2. The use of relaxation techniques 3. Change of light intensity 4. Many sleep 5. Self-complementary

Currently not. I've tried almost everything and I am now at the point where I understand nothing that helps. Although there are things that help. I try to eat healthy, I exercise (not for my U.S.) and also I try not to tackle too much sleep because after more than 10 hours sleep during the day I am a lot less sharp. I also use xanax complaints against.

How does it affect your life? 1. School 2. Work 3. Relationship 4. Perspective 5. Suicidal Thoughts 6. Self-complementary

With almost everything. For example, I drive my evidence only at the fourth time achieved. This was largely because, in this terrible time pressure in my head so I one day was hazy and the other day sharply. So it was but if I gamble on the day that I had to ride off again and had a lesson sometime fierce.

Do you think people have to join forces Visual Snow? 1. Recognition of Visual Snow 2. Engaging in specific research 3. Exchange of experiences 4. Self-complementary

Exchange of experiences already done enough. Sure this has been and still excited. But a cure for Visual Snow does not happen without new research and patient as we have tested almost everything what the current market is no result. I am referring not to medications, but all with a healthy lifestyle is associated. Sports, exercise and enough sleep, doing something fun with your friends and so on ..

This is slightly neurotic, damaged neurotransmitters. I fear that only the medical sector here anything can change. We as patients need to ensure that publicity about coming here and then a decent budget so in that sense must surely join forces vs patients.