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Posts (5)

Sep 30, 2017 · My 17 yr old grandson has diabetes and now has Lyme Disease in Autoimmune Diseases

@sevey41 Hello so very sorry to hear about your grandson. When I initially got sick my very first symptom was a panic attack (Oct 8th 2016). First one of my life. My hands started to convulse inward, heart racing, ice cold limbs, head drenched in sweat, in and out of consciousness. I was taken to the ER and doctors said it was nothing more than a panic attack. This turned into daily anxiety and panic attacks for me, none stop every day for 6-7 months. Then came along all the other symptoms: Visual Snow/Static, eye floaters, BFEP, ghosting or trailing in vision, flickering in vision, light sensitivity, tinnitus, daily headaches, stiff neck, migraine aura, fatigue, muscle spasms, pain in diaphragm. I could name a few more.

I eventually got rid of my anxiety, migraine aura, and fatigue is better. I practice mindfullness, meditation, deep breathing and take a host of daily vitamins. I believe you grandson can do away with his anxiety. It has to be multiple times daily effort. I believe I was able to re-train my brain to understand that I wasn’t going to die. Despite the daily pain I live with I’m glad to be rid of the anxiety.

Truly sorry about your grandson, I wish this on no one. Wish you and your family well.

Danny

Sep 30, 2017 · ADEM and Visual Snow in Brain & Nervous System

@joyluc1330 I suffer from visual snow. I am attributing it to possible lyme or co-infection. What symptoms does your son have?

Sep 28, 2017 · Visual Snow: Anyone experience this? in Eye Conditions

I wanted to give everyone a quick update as to my symptoms with visual snow and treatment.

I was seen by a UCSF Headache specialist – their doctors were part of Dr Goadsby’s team in the 2014 research on VS – unfortunately I did not get any help other then a prescription for Nortriptyline. To be honest I haven’t tried it, mainly for the reason that I do not want to be on antidepressants. This left me dealing with all my VS symptoms with no resolve.

I am not working due to my symptoms and inability to know how I will feel each day. Because I am not working I have medi-cal which is the bottom of the barrel in terms of health insurance, with only the option to see clinical doctors. Visits with Primary Doctor, who I’ve gotten into arguments with, have resulted in nothing more than him saying he can’t help me there is nothing he can do – verbatim.

I am 36 years old and this is the first time since I started working at 16 that I’ve been unemployed for more than a year and have ever been on disability. Both my professional & personal life have taken a hit, sad story I wont’ go into.

After speaking with people on facebook with similar issues I’ve found two possible options as a cause to VS:

The first is Lyme disease. I spoke to a gentlemen in Ontario who had VS along with all the symptoms (VS, BFEP, Eye Floaters, light sensitivity, ghosting/trailing, flickering, stiff neck, headache, tinnitus, fatigue, muscle spasms, joint pain). He was diagnosed with Lyme disease and after 3 months of IV antibiotic treatment is free of all his VS symptoms with the exception of a little VS and his floaters. This led me to get tested through iGenx lab in Palo Alto by way of an LLMD doctor. From what I’m told many tests for lyme come back negative so it’s important to keep testing. My tests with iGenx came back indeterminate and still going through another round of testing. I was bitten by a tick late last year around the same time my symptoms started so this is why I’m pursuing Lyme disease as a possible culprit.

The second possibility is metal toxicity specifically Mercury Poisoning. I began to look into this after speaking with a lady whom I met through an acquaintance. Again I went through all the symptoms that I had and verified that she indeed had the same. This lady was local to me and I was able to meet in person. She was advised by a friend to remove the metal fillings in her mouth as they could possibly be exposing her body to mercury. After about a month of detoxing from heavy metals and getting the fillings removed she was back to her old self. No VS symptoms with the exception a few eye floaters.

I don’t pretend for even a moment to know how VS comes about or what causes it. I only know what I’ve seen and am hopeful that lyme and metal toxicity are possible options for me to be rid of my god awful symptoms.

If any of you suspect that lyme infection, metal toxicity might be a cause to VS to you or a loved one please pursue it. I am now in the process of getting my metal fillings removed and will update you if there is any improvements to my symptoms.

Wish everyone well, much love.

Danny

Jun 26, 2017 · Visual Snow: Anyone experience this? in Eye Conditions

Hi Erika,
So sorry to hear about your situation, literally teary eyed as I’m writing this. I do get noise sensitive from time to time, especially when migraines come around. There are days where I just want to hide away from all stimulation, at the same time all I want is my old life back and be out with friends. I feel pulled in two separate directions and all I want is a little relief from it all. I’ve received a referral to be seen at UCSF headache and VS center but was told they don’t have availability until Oct, so discouraging :[
Wish you well Erika, I hope things start looking up for you and all of us here.

Much love,
Danny

Jun 12, 2017 · Visual Snow: Anyone experience this? in Eye Conditions

Hello my name is Danny. I live in Hayward, Ca. I haven’t been to the Dr to have a diagnosis but I’m certain I have VS. I got an onset of floaters Nov 2016 and VS came this Jan 2017. I’ve worn glasses since I was a teen. My mom has bad eye sight as well, she began to suffer from various conditions late in her 50’s from iritis, inflammation, and one or two floaters.

I’ll be 36 this year and I am attributing VS to the very stressful and traumatic 2016.

Here is my story it’s long but I promise it will provide some insight….

Feb 17th, 2016, I sustained 3rd degree burns to my right arm due to an accident working on a car. I was hospitalized for 13 days at St Francis Medical Burn Unit. I had the first 2 surgeries of my life during my stay (xenografts and autografts) it was the absolute worst pain I’ve experienced ever. It was also the first time I’ve ever taken pain meds, ever. I was given morphine, percocets, dilaudid, fentynol round the clock. After being discharged, I spent the next 5 months healing up at home. Physically my recovery has gone well. Attempted to go back to work and everything seemed normal for the next few months.

Come Oct 8th, 2016 while I was visiting a friend in NY I got a severe panic attack, hands turned blue and ice cold, began convulsing, heart beating a million miles, in and out of consciousness. A week later after coming home, I began to experience heavy anxiety. So much so I could barley walk, short of breathe, felt as if at any moment I could pass out. Within the coming weeks my anxiety got so bad I couldn’t leave my apartment. I saw a psychiatrist and was prescribed anti depressants (benzos and SSRi’s) at times they worked. However in Nov 2016 I noticed eye floaters in my vision and after some research I personally came to the conclusion that the benzos may have caused the floaters so I decided to stop. Coming off benzos to SSRI’s was extremely hard and literally felt like I was going die. I’ve seen 2 optometrists and 1 ophthalmologist who said nothing could be done about my floaters and not to worry as my eyes are structurally and physically healthy.

Jan 2017 I began to have bad acid reflux from some of the SSRI’s I was taking so I stopped them as well and began to notice the VS. When the VS came it also came with a very strange sensation of de-realization which eventually went away. It also came with a host of other eye problems, negative after images when I close my eyes, visual portals/auras, lightning bolts, light sensitivity a bit of tinnitus and my very first migraine.

I’m generally a very healthy person. I don’t eat beef or pork or any fast food at all whatsoever. I do a lot of walking. I’ve never done any serious drugs my entire life aside from cannabis, in fact it was only until 2016 that I’ve taken morphine when I was in the ICU (for my burn) or any prescription medications.

As of Oct 2016 I’ve quit drinking alcohol and smoking cannabis. I was only a weekend social drinker, and smoked cannabis a few times a week.

My VS consists more of color static. I have trouble focusing and can’t stare at anything bright for too long, glares, reflections all bother me. I also have light trails from objects that I stare at, almost as if the image follows after I’ve moved on.

All of this has had negative implications on my life. Before I was very outgoing, fearless, I loved to travel and try new things, and was very social. I now find it hard to enjoy things I once did. I’m afraid of doing simple things like going on day trips, work, or going to social gatherings. My floaters and VS are constantly in the back of my mind and they exacerbate my anxiety. I’m saddened that I can’t fully experience my sight and I’m afraid that perhaps one day it might be gone from me.

As of this month June 2017 I’ve now fallen into a pretty dark depression. I now get migraines nearly every day that have been on going for 11 days since writing this. My 5 year relationship with my gf has been greatly impacted and I’ve been let go of my job due to poor performance. I realize I’m not dying but internally I feel I have very little left.

I do my best to practice yoga, meditation, and deep breathing exercises as they do provide me with some relief with my anxiety and depression however it’s been extremely hard accepting there is no cure for my VS and I don’t do them as often as I should.

Any kind words or advise would be immensely appreciated.

To anyone who is suffering from this or knows anyone I’m truly so very sorry, my heart breaks for you and your loved ones. I feel like a caged animal, all I want to do is run free but this disease has me chained up and I could only imagine how hindering it must feel for young children suffering from this.

Sending my love,

Danny