Which advice would you give to someone who has just been diagnosed with Visual Snow?

See some advice from people with experience in Visual Snow to people who have just been diagnosed with Visual Snow

Posted May 9, 2017 by Emily 1150

Visual snow is a recent diagnosis in the medical fields. Find a competent neurologist to work with.

Posted May 9, 2017 by Leonardo 2000

Seek help with the anxiety level.
Also know that this is not a psychological issue but very much a dsyfunction in the brain's cortex

Posted Oct 2, 2017 by Rrakusin 2000

Well, what do you want to do? Are you content? Do you want treatment? Seek it. Pursue it.

Posted Jan 12, 2018 by Max 3550

-research condition
-stay healthy and hydrated
-don't let it affect daily life
-control emotional state
-be open with syndrome

Posted Mar 13, 2018 by samanthapaige 1500

You probably think there is something critically wrong with you, it is most likely that you are not. Your brain is just messing with your vision in a very unpleasant way. Go see an eye doctor to alleviate your worries, and do your best to keep living. Each day gets easier, and you'll have your good days and your bad. Don't let this symptom from keeping you happy.

Posted Feb 2, 2019 by Dangalangus 820

I have been to multiple Drs. who had never heard of Visual Snow so if you find a Dr. that knows about Visual Snow - keep that Dr. Also try to take note of what types of lighting and situations make your symptoms worsen. Also, try to find a facebook group or another way to connect to those who are also suffering from Visual Snow.

Posted Mar 5, 2019 by Jessica 300

Tell them they are not alone and everything will be ok.

Posted May 28, 2019 by Labnjab 2500

It's part of you now, it's not going to kill you. Just don't go sitting in a white room without distraction just to see if it suddenly dissappear, won't happen. If you got it from medication, try finding out when it happened, if you can fix it. If you got it from birth, you probably don't have the stuff in your brain that everyone has. I'm autistic so I'm sure I got some brainstuff going on.

Posted Sep 3, 2019 by Yasmine Elsen 2500

Try to use distractions and not focus on your symptoms. Doing so will only increase anxiety and therefore increase visual snow symptoms

Posted Sep 4, 2019 by Denali 2550

You are not alone! I like to think that this is rare but also pretty fantastic. It proves that our brains are quite amazing in how they process visual information. Ours are exceptional in this regard.

Posted Mar 2, 2020 by Karmalita 1400

You are not alone. It is very frustrating and worrying g to have a condition that affects your vision. Also a condition that is fairly ‘new’ or misunderstood in the medical community.
Most worries will be concerning vision loss over time however, some sufferers have excellent vision, no need for glasses/contacts and their vision has not deteriorated over time.
Each person will have varying degrees of the condition.

Posted Sep 14, 2021 by Kay 2670

Patients should relax and accept the fact that they cannot control that they suffer from VS.
I also advise patients to find something they love and occupy themselves with it to help move on and accept VS.

Posted Mar 14, 2022 by Khaled 3630

Try not to despair or panic, you are not going to die or become terminally ill from this condition nor will you loose your vision. Blindness is not a characteristic of VSS.

There is plenty of support and information on managing your condition with everything from lifestyle advice to possible treatments you could try so all is not lost.

I would recommend visiting the Visuals Snow initiative site. This was set up by a Visual Snow sufferer just like you and me and together with the support of Medical Practitioners and Medical Scientists are studying the physical mechanics of Visual Snow, Trialing new and exciting treatments together with informing doctors and patients on all things Visual Snow related. I highly recommend you check them out. Simply search Visual Snow Initiative via your internet search browser.

Posted Dec 3, 2022 by Stuart3758 900