THE STUDY IS OUT - Plus Email from Dr. Schankin

So I spoke way too soon with my last post. It ends up the study was out and no body knew!

Here is a link :
 http://onlinelibrary.wiley.com/doi/10.1111/head.12378/abstract

You will have to purchase the study for 3.50 (for patients) in order to view it, unless you are subscribed. I purchased it, but their are copy write laws you have to adhere to and are only allow to share with your Dr.'s. It's well worth spending the 3.50 because it's 10 pages worth of information.

The study actually shows two areas of the brain that are hyperactive (Hyper Metabolizing). YOU HEAR THAT??? It isn't an anxiety issue as most of these Dr.'s have tried to shove down our throats!! There is a physical issue going on in our brains. For the longest time I was scared to hear these results because I didn't want confirmation that I was broken, but truth be told I am ecstatic about the news;  For one I can show it to all of my Dr.'s to pass on the knowledge and hopefully use it to win my disability case and two because I am not broken.... my brain is just hyper in two areas.

 The study does not speak about any type of treatment, but fear not... I emailed Dr. Schankin who was the researcher I met with when I flew to California for the study. He is a very nice man and was very dedicated to spreading the word about VS and I am very grateful for knowing him and knowing that VS patients have such a wonderful Dr. on their team and equally can be said about Dr. Goadsby. They are both very smart and dedicated Dr.'s and I see them doing much more for a lot of different neurological issues and helping a lot of people. The email basically confirmed the study being released as well as another publication regarding the phone interview study (Part one of the VS study). He said there are SEVERAL (not just one) treatment options being looked at, but they are now in Germany (not California) and need to work on building a foundation there so it may take a little while. (This isn't bad news people..... We have an answer to this RARE condition..... Time is on our side!)

 So..... I found all of this information out yesterday and was in the best mood... until I left my house. I started getting the sensation of falling forward while I was driving. YIKES! This happened to me back in 2012. If the Devil wants to get your spirits (even if their up) he will get them. So needless to say I've been having a pity party for myself. I understand from the study one of the areas that is affected for us is a part of the brain that processes perception for being upright... so it makes sense why sometimes I feel like my brain is flipping around or I feel like I am not steady. The migraines don't help either.

 All I can say is Thank God..... I, for the longest time, thought "why me" as I am sure most have as well. The truth is.... why not us? Why not anyone? I have been watching a show called London Hospital (I am obsessed with all things British and it's one of the first places I hope to visit once I am in the clear from VS). The series is based on actual events and patient cases that were documented over time (early 1900's). I have watched where they experimented with new medicines and watched people die from not having medicines. It's taught me that as long as we are on this earth we are going to continue to evolve from our experiences. Every single person on this earth is going to face something that they don't want to... something that will make them say "why me?", but all we can do is face is and learn from it. And sometimes you going through that pain will help someone else in the future to avoid it or understand it better so they can get through it. With us going through VS we are going to be able to help others who get this. They can go to their Dr. and he will know what to do. Do you remember how you felt when you first got VS? I do.... I will never be able to forget it, but I feel like the world is gaining something from us going through this hell. It isn't for not... it's to help others.


Love to all of you!
xo
Candi

Update on Visual Snow Study

The study was supposed to be out in April, unfortunately it wasn't. The only thing that did end up coming out was a published paper on the preliminary phone study the researchers did first and also something else that mentions a connection between migraines to Visual Snow. I did not see the latter of the two, however. http://brain.oxfordjournals.org/content/early/2014/03/18/brain.awu050.abstract

I did recently receive an email from a member on the Visual Snow Facebook page and she shared this following post from a member:

Today, we saw a renowned neurologist at UCLA and the first thing I asked was about the research and he mentioned that yesterday he had a meeting back East with many neurologist including Dr. Goadsby. We have seen many doctors, including a neurologist at UCSF, but it was not Dr. Goadsby, he was not available, and I have to say that today’s doctor was the first doctor that we got some direct answers. So, this is what he said about V.S. current theory that is caused by some changes in the excitability of visual processing area of the brain, changes in the chemistry of the visual cortex and the excitability. He said migraine and V.S. are related because people with migraine get V.S. and jagged lines just to a different extent. TMS (Transcranial Magnetic Stimulation) that was recently approved by FDA for migraine would be a helpful therapy for V.S. people and he said he should have that equipment in couple of months. Basically it is pluses of magnetic energy to reset the cortex. He said there are two ways to treat V.S., the conservative way or with some medication. I mentioned that my son’s MRI and all his blood tests were fine except Vitamin D which was low, and he just started taking one pill a week for it. The doctor said he would not be surprised if after one month taking the vitamin D, the symptoms might get better, because recently they have connected Vitamin D with some visual activity in the brain (I am sure how he explained it). He recommended conservative things to do by having a routine. Eating healthy, sleeping and aerobic exercising, preferably outdoor and get some sun. He recommended magnesium, riboflavin, CoQ10 and melatonin. Also, he mentioned people that might have any surgeries and if propofol is used, it might reset the brain chemicals and they have seen it in some patients.He mentioned memantine (Namenda) which is also used for alzheimer.One more thing I forgot to mention. The neurologist recommend two table spoons of Chi(I am guessing se meant Chia) seeds everyday, you could put them in your salad or any food or he said it even comes like a snack bar you can purchase.

So there you have it! If you look into TMS (Transcranial Mangnetic Stiumlation) it really does seem promising for VS. Instead of using medication to chain brain chemistry you will actually be using electricity to fight electricity- It makes more sense.

  Update on me: Still having the same annoying peripheral stuff going on... trying to ignore it, but it actually causes me to get pretty disoriented when I am in a car and watching traffic go by at a light. I am also getting this weird thing when I read... each time my eyes saccade from right to left while reading small print it is like the page shakes with each word my eyes fixate on. I haven't heard any other VS'ers complain of this. I honestly sometimes feel like I am just a different case all together and it's more like my brain is just deteriorating or something like that. I dunno... I guess I really shouldn't beat myself up over it. I still have big dreams of traveling the world and as long as I have those... I have hope. God Bless! Candi

Screw you Social Security Disability

Yes, I said it!!! Screw you!!! You and your panel of HEALTHY employee's found me capable of work??? Step into my shoes you bunch of greedy, ignorant people. If you were in my shoes for a minute you would grab the nearest object with a sharp point and dig out your wrists. I have dealt with this crap for 8 years! Of course I have some level of function... I have stopped myself from committing suicide... does that deem me functional? Or is it because I won't swallow your Rx of happy pills which probably got me in this situation in the first place. Explain to me how a person whose whole field of vision is cluttered with static, see's trails off of passing objects and afterimages after most things you look at, who can't stand to be inside a moving vehicle because the speed makes her dizzy and her peripheral vision looks like I am on a merry go round, can work???? What the heck can I do? Should I go be a nun? Yes, I could probably do that.... is that what I am capable of doing you bunch of ignorant baboons! Because you can't physically see my disability that deems me non disabled???? You think this is what I want to do with my life? I would much rather be healthy and able to be at the beach soaking up some sun, or traveling this beautiful world! Instead I spend my days stressed out over what I am unable to do because of this stupid disorder that I was so freaking lucky to wake up one day with. Thank you, thank you, thank you! You people are wonderful and I can only imagine how many people are out there suffering way more than I am and you lousy group of fart tarts have denied them as well. This migraines on you!

April is here.....

So this is the month, April,.... the Visual Snow study results are supposed to be released sometime this month. How do I feel? Depressed, anxious and scared. I say depressed because it's still hard for me to believe that I am going through this rare disorder. I just can't seem to wrap my head around it. How I was normal one day and the next not. I say anxious because, I participated in this study... this is going to show, or may show, what exactly is going wrong in my brain and others with VS' brain. I say scared because the results could come back with really bad news. This is a make or break it thing for me. It could say there is some kind of damage they found or something irreversible going on. One the other end of that though they could have really great news that could give us some hope and something to hold on to. I sometimes try to think about the things I would do if there is a treatment for this. Some people do just fine and are still pursuing their life's dream, my VS however has gotten worse to a point where my tracking of fast objects is delayed. My dreams have been placed on hold. If here were a successful treatment for this I want to visit London and travel by train. It is something I have always dreamed of doing. I am a little, maybe borderline, obsessed about all things English. After that I would travel all of Europe. I would then come back to the states and travel here. Deep down I feel like as long as I can hold on hope to fulfilling this dream, then there is a chance that I can get better. God willing, we will all get better.....

Hyper aware - Majority rules

So, I have since seen two very brilliant Dr.'s regarding my peripheral vision and why I see things jerking/lagging and not smooth as I did before. The first Dr. said this is normal, however it is not normal to see it as I do. The best way I can describe it is almost like watching a flip-book comic. Sometimes it's not noticeable, but other times it's hard to ignore. The second Dr. told me everyone has all of these things with their eyes, visual snow, after images, jerking vision (Saccades and smooth pursuit vision) however "Normal" (He didn't want to use that word, but I said it was fine as I know my brain isn't normal) peoples brains filter all of this "noise" out, but in my case and other peoples cases, typically in close head injuries, this filter stops working. Both Dr.'s say there is nothing they can do. If it gets too bad with the jerking vision one said he could try to treat it... he didn't go into how. At the moment we are waiting for the Visual snow study to come out to see if there is any clues as to what is going on in our brains. Then at that point we can move ahead to see if we want to trial some different medications. I am applying for disability at the moment, but I don't know if I will get it. After all only I can see what I am going through with this curse of an illness. My biggest problem now is still the fear that this will get worse. My 2nd Dr. said he doubts that it will get much worse. I have heard some horror stories however. The mere fact that I am having this peripheral stuff is scary because this particular symptom has only happened in several other cases out of hundreds and hundreds of people with visual snow. So why was I the lucky one? Well, it could be the fact that when I was 4 I was kicked in my head and fell backwards hitting the occipital part of my head requiring stitches. From that point on I have had sensitivity to my scalp just like a person with migraine disorder would have. I also would get car sickness frequently and vomit. Then the migraines started when I was about 10 or so, they rarely happened though. By the time I was in my early twenties I was working out regularly and rarely had a headache. Then this Visual snow stuff happened after a migraine and now all of a sudden they are here and fiercer than ever. Could this be why I have Visual snow? God, I hope this study shows something that can be fixed. This hyper awareness stuff is for the birds. So I think these Dr.'s are right. I think there is something going on in the brain that is shutting off the normal filter that keeps us from noticing all the visual noise and even the sounds like cracking in our ears.. things that I now hear. Maybe there is an over stimulated area and a hypo functional area that isn't getting enough stimulation. Either way, God willing, we will find a cure. I am 31 years old and am not ready to give up yet!

Heterozygous A1298C MTHFR mutation and HSV6

I forgot to mention that I had this show up on my most recent blood work. I can't find too much out about it, but apparently I don't absorb B12 or Folate too well and I also am unable to detox as well. I also found some conflicting information that this is a common mutation... so who knows? HSV6 was also positive and still active, which is strange... it says 100% of the population will come into contact with this virus, but mine showed as past infection and present. Not too sure what that means.

Waking up feeling down

Lately it's been fear in the back of my mind 24/7. Since this new symptom started it's like getting Visual Snow all over again... fearful of it getting worse... hearing stories of it getting worse and knowing just how bad it can get. I have come across a couple of people who have the same symptoms, but it looks like they've gone on to college and graduated and never responded to their original posts. It gives me a hope in a sense, but I still can't stop thinking about the "What if"! I really wish the Visual Snow study would be published already.... I am so scared it will not show anything, but the fact that they will not release any news on it until it is published tells me they must have found something! God, how I pray they find something... something that gets us either closer or right face to face with a treatment. At this point if they told me to eat dog crap and it would make me better, Put it this way, you wouldn't want to come to my house! My migraines have been showing up again, but I reckon that might be due to me getting closer to starting my period although you never know when it comes to my migraines. They started with this Visual Snow BS and haven't left since!!!! Dang this visual snow and the hell it brings. I couldn't imagine having this my whole like like some people do... I just can't imagine! I guess in a way it would be good because they wouldn't know what normal vision was like and maybe they are saying I can't imagine getting this later in life. You know what sucks the most? My health went to crap at 24 years old. I worked out 5 days a week, had an active and fairly healthy lifestyle (Active beach bum), but was just under a lot of stress. Why did the Visual Snow hit 3 1/2 years later. I guess it was a little before then because I saw the blue entopic phenomenon, but still.... why did it slowly progress? Yes I was having migraines every now and then, but nothing major like I do now. I wish Dr.'s could just figure this out. I wish a Dr. would be truly captivated with this disorder and find a tried and true treatment. God, I hope that is Dr. Goadsby. I want my life back. My son is already 4 and I have never been normal around him. He doesn't know me as I used to be... free spirited, fun, loving, passionate... now I am just a stone cold empty shell of a human being who he calls mama. That sucks!!! So yea, back to my original post... I wake up feeling so depressed... It isn't a way to live. I hope it goes away soon... I just hate life like this..... It isn't life at all... it's wasted life..... I just feel like there is a barrier between me and the world... like all of my working brain is secluded to a small area.