Visual Deficits are the hardest to treat.....

So before I get into my appointment that I had today with my migraine specialist at USF I will fill you in on my appointment last week with my neuro ophthalmologist.

 Several months ago he seemed really excited about the visual snow study so I took the time to get nice colorful folders and put every single study I had into them along with a print out of my symptoms. I handed it to him after I sat down, he briefly skimmed through and asked me some questions about it. I showed him where they said the error is in the brain and some things about treatment, etc. (There isn't any) - all he did was raise a brow. I then proceeded to tell him I am trying to get disability at least until there is a treatment and that was when he became more alive. He said it's difficult for me to get disability because there is no evidence that anything is wrong. I am 20/20 on all vision tests and nothing shows anything. I mentioned the study. He said it's too new to prove anything. It's only research..... ::Scratching head:: He said he would try to help in any way he could... so I handed him the paper my lawyer asked for him to fill out... he said NO. Then proceeded to tell me the lawyer needs to send it to him directly and pay a fee. He said I shouldn't be the one to pay it since the lawyer will take money from me if I win the case. I guess he doesn't realize that $30.00 is chump change compared to the thousands I've spent trying to figure out what's been wrong with me for the past several years?!? The biggest insult was when he suggested I try botox for the issues. Because clearly he can correct an occipital lobe problem with botox.... oh and also fill in my frown lines from all of this disappointment!!

 Don't get me wrong, this Dr. usually seems more interested in all of this stuff. Out of all of my Dr.'s he's been the one that I've felt would be the biggest help with setting my mind at ease, but no. In the end he wants me to see the vision therapist again (She is awesome!!) and see if any of her testing machines can give us evidence of a problem.... I hope it does! Oh and when I left... my colorful files were with his nurse being filed away........ :(

 Now for today's visit with the migraine specialist. I started my trip to see her with a bunch of rushing. My father, his girlfriend, their kid and my son all tagged along. I needed him for driving support.

Anyways, before she walked in I realized all of the colorful folders I made her were left in my car which was now with my father. When she entered I let her know this info and told her they each contained a study. She proceeded to tell me that someone already sent them to her. (That someone was me, and it wasn't the two main studies that she needed to see).

 I let her know the area in the brain where they think they've located the problem. She said they've always known it was there, but with the new imaging they are able to pinpoint it which is good. She seemed surprised when I told her that my symptoms are 24/7.... I've told her this before... every time I visit :)

 I told her about my most recent symptom (it's one year old now) and how when I am walking or driving or in a car that anything in my peripheral seems to skip and is missing frames. She called it a deficit and said it isn't easy to treat like a positive phenomenon would like visual snow or afterimages. So... that was bummer, bummer crappy summer right there! That's the kind of news that makes me want to take a long trip off the side of that 6 story building. (Okay, I am kidding, but it wasn't pleasant... she didn't sugar coat it for me and I like sugar coating sometimes.)

 So, she suggested I try an epileptic for the positive phenomenon, which I told her I was afraid to do, so she told me the reason I am afraid to do it is because I keep telling myself it will make me worse. I did tell her last time and the time before that a lot of this stuff started after I stopped medicine and started medicine... there is a real reason behind my fear. Anyways, she is just increasing my verapamil since I've been taking a baby dose, so now I will be on 80 mgs every day. We had to watch my blood pressure last time because it's been 90/60. Today for some reason it was like 120/68, which I've never seen before. I can always come up with some irrational fear as to why adding 20 additional mg's of verapamil will cause my blood pressure to plummet so low.... but I guess I have no choice.. I've already taken it so we will see.

 There ya have it... my appointments. I am pretty much in the same boat I was before going to both of these, but $150.00 poorer. :)

 All kidding aside, I hope I see something positive come from the medication increase and maybe something also will show up on the vision tests.

Update to my last post

 A very wise woman once told me "If you get angry or upset, walk away and give yourself time to calm down before reacting". I think that is what I forgot to do earlier. I know I could have easily just erased that post and no one would have ever known, but I wanted to keep it up to remind myself to next time take a break and cool down first.

 I know in my heart of hearts that my friend had no intention of upsetting me, and truth be told maybe I upset easier than most people. But now that I've had time to relax and think about it more I can now react. It's actually a good thing that this other study came out. (I don't have a link for it, but you can google - Palinopsia Revamped: A Systematic Review of the Literature David Gersztenkorn, MD, MS Andrew G. Lee, M - to find the study. It's actually a very great report. Yes it combines other studies, but this is exactly what we need. We needed a study that referenced other studies so that one could look at the picture in a whole and not fragmented with too many what if's.

 For about a year now I've felt like a "What if". I've felt completely separated from others with VS because only a handful of others, that I know of, have this wacky peripheral vision like I do. And fewer than that have it in their central vision, which scares the utter crap out of me. I know that at any given time this condition can get worse for no rhyme or reason. But, back to my point - This Palinopsia study (which yes, is only one of my many symptoms) explains several different types of Palinopsia and one of those types is most similar to what I experience in my peripheral vision during fast movement, such as cars passing. It's called Visual Trailing, aka Akinetopic palinopsia. It is often described as stroboscopic vision. Motion appears fragmented and afterimages are left at the previous location where the moving object was observed. The only difference with this however, is that what I am seeing is not an afterimage, per se. My peripheral vision is just fragmented and is missing several frames.

 So, you see, this actually ended up making me feel better. Palinopsia is most often associated with Visual Snow, and to now see that my strange symptom that I thought wasn't related, be classified as related, makes me feel like once Dr. Goadsby and Dr. Schankin figure this stuff out, that my wonky peripheral vision will get better too.

 Okay, so there you have it. When you get upset, take several hours or even a day to sit back and let it all process before you react.

xox
Candi

Did I do it all for nothing?

 The whole reason why I left the Facebook Visual Snow board is because of the constant anxiety that could be felt from almost every single post. I was not mad at anyone for posting the way they were feeling, I remember how scared I was in the beginning, I just chose not to put myself around that anxiety anymore since I am a very receptive person. It helped me tons with coming to terms with this disorder. The scariest part of all of this was not knowing what was/is causing this. I know that all of us are very different, no brain is the same, so what may work for one person, may not work for another.

 When I was asked to participate in the visual snow study I found myself in a very surreal moment. I felt the fear rising in me and experienced every irrational thought one could, such as the plane crashing, the testing causing more symptoms, etc. On the other hand I felt this deep concern that had I not gone for this once in a life time opportunity to be in the study, that I would regret it for the rest of my life. I also felt that had the Doctors found a similar mechanism in all of us attending, that it could mean the possibility of a similar treatment for all of us.

 My point to all of this really is - Lately with rumors going around about other possibilities - that VS facebook members are coming up with, and other studies being done by other doctors, that me going to California was all for nothing.

 I feel like, WHY? Also, how dare?!? How dare you people take for granted those two doctors who have gone out of their way to devote their time to seeking out the why's and how's of visual snow. Why can't you people wait until they are finished with their studies before you start moving on to someone else's theory? It makes me down right mad! The study that I read today simply took other peoples work and placed it into their own report. Most of it I had read before and some of it made no sense at all to me. My money is on Dr. Goadsby and Christoph Schankin finding the answers. This is where my prayers are going and God has brought me here for a reason. I met those Dr.'s and seen the determination on their faces. Don't rain on my parade, PLEASE!

 This past month has been one of the best months I have had in many years! My migraines have been far and few and I am turning 32 tomorrow. I usually don't celebrate much for my birthday, but dang-it, this year is MY year! This is the year that something good happens in the face of VS!!