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Joe BloggsJoe Bloggs
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Hi Lorraine,

Quiet in here isn’t it!

I was looking for somewhere to talk potential remedies, tips, experience and maybe throw up a bit of support, and I saw this very quiet forum with your post, and thought I would register just in case I can say anything helpful.

A great source of information is The Visual Snow Initiative https://www.visualsnowinitiative.org

https://www.youtube.com/channel/UC_kEupof1xRd4QXrWZclD7Q

I am not affiliated with them in any way, but I have viewed all of the content there, and it is likely the most informing available.

I have no idea how much you tried to understand your Visual Snow or what you have tried to come to terms with it?

Some things have helped me, but it is important to appreciate that there does not seem to be a cure.

My research and experience tells me there are some connections between Migraine (Especially Aura), Tinnitus, Brain Fog,  and Visual Snow.

There are also at least two very related conditions.

HPPD,  and Persistent Migraine Aura.   Visual Snow is a symptom of both of those,  but more recently is considered a separate condition.

I found talking to dr’s about this fruitless,  insulting and degrading, and a big part of my coping mechanism is having nothing to do with health “professionals” whatsoever, they make you feel ill and worthless.  Your experience might differ and I hope it does. But that was a big win for me.

I took every kind of self administered or online test I could, to learn as much about my body as possible.

I learned that I had a serious vitamin B deficiency, so I take vitamin B supplements,  especially Folate this has helped me feel better.  B12 and B9 are very important.  Try a Vitamin B Complex supplement.

I know that I am sensitive to Caffeine,  and that when I drink caffeine I am more sensitive to low blood sugar, so I limit my caffeine intake and I try to eat natural sugars every day.  This helps a bit.

I find that 5 htp (Stops tremor and headache for me) and l-tyrosine (Slices through brain fog)  both help take the edge off, in fact without them some days I could not work due to the brain fog and the chronic headache.  Be careful with those 2, some report they make symptoms worse!

Stay hydrated,  Sleep enough and regularly,  Drink in moderation (avoid hangovers)

Most of all though it was about acceptance, that this is me.

I have to listen harder,  look harder and think harder, there is a layer of noise in my nervous system that I can hear, see, affects my motor coordination and I have to think through. But its been like that for years.  And to start with it is grit and determination, but eventually you can stop thinking of yourself as  ill, and it does begin to be normal.

There are bad days, and periods of flair ups, and sometimes bad weeks and bad months, but in general I have not become terminally ill, blind, or completely disabled.  It does not seem to lead to anything worse other than ups and downs.

I hope you are feeling better today 🙂

 

 

 

 

 

 

 

 

 

 

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