Visual Snow Initiative's Personal Stories Series: #6 Kate Engler

[@AdamReidWilson]

Great video. Thank you for all that you do to raise awareness VSI! I have not gotten an official diagnosis yet, but I think that I have VSS. Having the PDF you guys made to give to my doctors has been very helpful. Thanks again!

[@ameliezl8320]

Can you tell me where I can find that pdf? I'm trying to get a diagnosis

[@VisualSnowInitiative]

Thankful for all your support!

[@R-a-n-d-o-m-p-e-r-s-o-n]

@Adrian Nelson mine does I also don’t have a official diagnosis too but I have almost all symptoms

[@swikaradhikari9216]

I have completely cured my visual snow by aligning my jaw properly. My jaw was misaligned which caused pain, cracking & popping and a lot of muscle stiffness and migraine. I corrected it with Neuromuscular dentistry orthotic & craniosacral therapy. I still have TMJ and other weird eye symptoms like floaters, after images but no more VS & other major jaw problems.

[@matarada1510]

depends on person probably

[@konosmgr]

Wow, what's neuromuscular denstistry like? Did you have a surgery?

[@LouisLin2002]

You mighy me up to somwthing. The girl in this video has an uneven face and it might be a jaw problem.

[@LouisLin2002]

And also, do you hear crackling and popping of the ear when you swallow?

[@sugatpatil3816]

Hi swikar where are you from??

[@peacepeace4256]

I am so much disturbed. And I pray everytime that may God send a cure for Visual Snow.I feel so much pain for everyone who is suffering from it. My life has changed the day I came to know that my only child is suffering from that.

[@VisualSnowInitiative]

We're so sorry to hear your struggles, we hope you're doing better these days. We know how tough it can be, stay strong and we're here for support.

[@BrendaMarks-gj9ct]

In name of Jesus healing and peace

[@RolandodellaValle]

Thanks Kate for telling us your story. I experienced unregular migraines with aura from vestibular type, and my first persistent symptom was "only" dizziness in my youth. When I was twenty, I began to notice a mild visual snow in the dark. After years it was getting worse after visual migraine auras without headache and the floaters also multiplicated and got bigger. My type of visual snow is similar to migrane aura that is solving, that means that I have no more scotomas and have a foggy vision. A quite loud ear tinnitus and headache pressure are other non visual symptoms. The other visual sypmptoms are corresponding to those of the other sufferers. After a lot of years I discovered to suffer in visual snow. After another episode of visual auras, I went to a neurogist who ordered an MRI. This came back with several withmatter lesions and an old cerebellar ischemia (lacunar infarction). Probably this is due to the migraines but non specific. However it is much evident, that my visual snow is related to the migraines I suffered first. Is there anybody who has has the same? Thanks and greetings from Roland, Switzerland

[@NOLAFunkWizard]

This is exactly what I have. I've looked through all of your videos and this is identical to what I've been dealing with since Jan 2020. Is it possible to connect with Kate and discuss this more? So crazy, I've been feeling so lost for years and this finally answers my questions about this. Thanks again for this channel - it is much appreciated.

[@VisualSnowInitiative]

Hey Chet, please join us this Saturday April 16 for a Virtual Visual Snow Summit to discuss a new treatment, it's free. Please visit the link below to register. April 16th 5-7 PM ET www.visualsnowinitiative.org

[@DutchGuyMike]

Be aware that it is usually linked to stress and exhaustion (it getting worse), so take care/heed and make sure you relax!

[@ndk4]

Thank you for this. Makes me realize that we have long way to go from an effective treatment..

[@VisualSnowInitiative]

Hi there, a New treatment came out in 2022! The new treatment is by Dr.Tsang/Dr. Shidlofsky, and it is available in their clinic locations. Their information/location is on our Doctor Directory. Feel free to check it out on our Website.

[@johnespinoza4354]

I’ve recently got visual snow and it’s horrible I went to my eye doctor nothing was wrong with my eyes also went to a doctor and got an mri on my brain they said I was fine and this visual snow gives me a lot of anxiety and it sucks ☹️ I wish it could go away

[@tammyluu86]

It causes me anxiety too, but just know you are not alone. Hopefully the awareness can be spread and more research can be done to help us. 😊

[@kaylaharp9387]

Thank you for sharing your story! Ive had problems with vertigo, balance, my vision, ringing in my ears, tremors. I saw a neurologist who barely did any testing and attributed my symptoms to anxiety and acted like she didnt believe me. My optometrist yesterday said I have convergence insuffiency and she thinks I have visual snow syndrome. I've looked it up and I think that's what I have. It fits. Now that I've looked it u p I know I see ghost images with bright things like the stoplights, signs, headlights, white text, and see after images. I see light static- very mild for me, see more when looking at a blue sky. I've had migraines since I've been a kid.

[@bowisabella9887]

Hi I have been diagnosed and does it get worse

[@knofi4619]

Bow Isabella It depends how many symptoms you have and how strong it is. But I think mostly its doesnt get worse, it stays like this

[@bowisabella9887]

@@knofi4619 ok thank you I've only been asking because I feel like It has gotten worse

[@knofi4619]

@@bowisabella9887 when did you got it, cause for me it got worse for 3 months then nothing changed and now it definetely got better since March

[@bowisabella9887]

@@knofi4619I was diagnosed a few weeks ago

[@VisualSnowInitiative]

​@@bowisabella9887 We feel the urgency around not having all the answers for Visual Snow. Our organization is working hard every day to ensure this is no longer the case, and that we are on the right path to finding a cure. If you haven't already, we encourage you to watch some of our Live Q&A Video series where you can hear leading VS researchers answer many great questions regarding VS and its accompanying symptoms.

[@DutchGuyMike]

Mine is progressive (getting worse). Mine started around 2013 and has kept getting worse ever since, including the migraines/headaches (which are also getting worse, perhaps they are not directly related to visual snow but it is at the very least an indirect consequence of it), there are plenty of people that I came across in which they have their visual snow worsening so this "concluding that it does not get worse" is highly untrue. My life is torture and there is no escape as there is no visible trigger as to why it is worsening (though it definitely seems linked to stress and exhaustion, which visual snow already causes in most people) and each time I get accustomed to it again it worsens again..

[@tonylang7526]

I HAD YOUR SYMPTOMS, WAS ALSO ABUSED BY A BARRAGE OF SHOTGUN TESTS AND MEDS TO NO AVAIL: A RADICALLY CHANGED DIET TO NO FACTORY FOODS -- NO PROCESSING, NO ADDITIVES STOPPED THE MIGRAINES. THE SNOW CONTINUES WITH TINNITUS, BUT NO REAL DISABLING EFFECTS.

[@lancetschirhart7676]

If anyone can relate to me, please share. I've definitely got VSS now, but the intensity of the other effects aside from the snow, such as the tracers or the appearance of everything being under red and green lamps come and go. The snow itself and the afterimages are relatively mild most of the time, mild enough that I'm not in a constant state of panic about them anymore. I also see an aura of light around people if they contrast with their background. Got the tinnitus now as well. Fortunately the intensity fluctuates, because when that gets really really loud, it's the scariest one. I would most definitely kill myself if I knew I would have to live that way. I've been having bizarre attacks almost always at night too, where all of the visual symptoms hit me hard at once along with this weird psychology that is almost like being drunk or stoned or something. It's neither good nor bad in itself, just really different, and I really focus on the present moment and become introspective. My anxiety is quite bad and I am also lazy now, I just lay around at home in bed, even though I take adderall and drink coffee, so I really should have no problem staying out of bed. I think these parts might be a consequence of the belief that the good section of my life is over, and not caring whether or not I live or die anymore. I don't think they are neurological symptoms. Could be wrong about that. I stayed awake drinking coffee for days because I was afraid to fall asleep because when these attacks happens my body becomes so intensely relaxed that my breathing almost stops entirely. It is horrifying, almost like if your foot falls asleep and you can't move it, but it's like it's my chest and diaphragm falling asleep so the inability to move is the inability to breathe. Also, my arm strength has gotten so weak, my arms are so easily tired. Also, I have stinging eye pain all the time. Also, my arms and legs fall asleep so easily, just sitting in normal positions. Have you had any of these other symptoms? I've been having bizarre attacks at night too, where all of the visual symptoms hit me hard at once. I stayed awake drinking coffee for days because I was afraid to fall asleep because when this happens my body becomes so intensely relaxed that my breathing almost stops entirely. It is horrifying, almost like if your foot falls asleep and you can't move it, but it's like it's my chest and diaphragm falling asleep so the inability to move is the inability to breathe. Also, my arm strength has gotten so weak, my arms are so easily tired. Also, I have stinging eye pain all the time. Also, my arms and legs fall asleep so easily, just sitting in normal positions. Have you had any of these other symptoms? VSS is a part of the puzzle for sure and I'm grateful for that, but I still feel mostly alone. I have a burn on my hand from a month ago when I touched my hand to the inside of the oven. At the time I thought it wouldn't even leave a mark and that I pulled my hand away instantly. By the look of my hand now, I can see that I had held it against the burning metal for a moment before realizing that I was touching something hot. Something is definitely wrong with my nerves and muscles, or the parts of the nervous system and brain connected to them. My arms are very tired from all this typing now.

[@mosesnoble5236]

I can relate

[@aname5449]

MS, NMO, MOG

[@DutchGuyMike]

I practically suffer from the same exact things :(

[@aname5449]

Guys, seriously, see a neurologist and ask about MS, NMO, and MOG. These are autoimmune diseases with treatments to manage them.

[@aname5449]

Also, about the Adderall, that is bad for you. Can cause stomach ulsers and a lot of those symptoms. You need to tapper off and deal with the withdrawal process. You will start to get better, mentally, within a year.

[@ChallengeTheNarrative]

There's another pattern recognition dysfunction ASFEDIA which is object edge detection. This is something I have and that will give you pain migraines. What I actually have been diagnosed at hospital is Visual Stress. Arnold Wilkins was the academic researcher for Visual stress and I have talked to him via the telephone and email years ago. I fixed with precision tinted lenses (eye glasses). Custom colour. Unfortunately medics can't see past the eyeballs. I had two and a half years of hell. Irlen people on 4 visits. Specsavers (tint match) thereafter. I must tell you my mild-ish visual snow is not fixed with colour tinted lenses!

[@simplyvibin4646]

Some of y’all are just getting it it’s weird but I’ve had it all my life is it possible to be born with visual snow

[@j.s.conrad]

I can't remember life without VS. When I was a kid I didn't count sheep to fall asleep, instead I was counting the little VS dots

[@hideouspenguinboy]

It really drives me insane when people that've had it for a month are like, going suicidal. Calm down, y'all. It sucks, but yikes.

[@BobbyThompsonJunior]

@@hideouspenguinboy Fr like join the club with us people who have had it since we were born and some of us litearlly didn't realize it until now

[@VisualSnowInitiative]

Yes, many are born with VSS and for others it comes on later in life. Mostly children and young adults.

[@goukifafa]

I would also like to share my experience with your channel too

[@OtherSide..]

Things get better with time it might not go away but you will get used to it I have tinnitus and visual snow it is possible to have a normal life

[@spartaeus]

I have it in my left eye. It gets better if I stay away from electronic screens, tablets, etc. I also have a scleral buckle in that eye, which messes up my vision also. Opthalmologists don't like to step out from their orthodox beliefs, even though their practices can cause more eye problems than it cures. It's a money thing for a lot of them.

[@SC86Canada]

I want to know what type of mattress these speakers sleep on, I have a feeling like foam beds do not help. anybody feel the same or have any type of recent. It would be nice if This foundation sent out pamphlets to doctors and ophthalmologists around the country and held seminars around the world. maybe even a TED Talk.

[@VisualSnowInitiative]

Hi there, The first Visual Snow Syndrome TED Talk is on the TEDx Official KZbin Channel & our other social media platforms! Feel free to check it out! Thanks.

[@OtherSide..]

If I can do it you can too normal life it just takes time