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