So I haven't heard any news directly from the Dr.'s since my last conversation with Dr. Schankin, however I did hear about a recent post made on the visual snow facebook page.
A person from the board recently called UCSF to do an interview with Dr. Goadsby and was told that he is very busy setting up a Visual Snow clinic in the UK. I quickly dismissed this as a rumor until recently when I gave myself more time to think about it. My last conversation with Dr. Schankin he mentioned them (he and Dr. Goadsby) being in Europe now and that they needed to establish structures prior to going forward with the different treatment approaches they were working on.
In a way I almost feel like this is really happening.... that they are really establishing a treatment facility in Europe- Maybe the UK even though they are in Germany at the moment. I hate to get ahead of myself with anything, so this is merely speculation and a whole bunch of hope mixed in to the equation. I will post more if I hear anything else.
Candi
Thursday, June 26, 2014
Monday, June 9, 2014
List of symptoms
I don't think I've officially made about devoted to my symptoms, if I did in the past I can assure you I now have more and it needed to be updated, so here they are:
Static - throughout my entire visual field (more apparent at sun down or in the dark). It resembles what you would see on a T.V. with bad reception.
After images - If I look at anything bright or anything light on a bright background or vise versa I will see a faint outline of whatever it was I was looking at. We've all seen the picture that circulated on the internet with the outline of Jesus which you are to stare at for 20 seconds or so and then look at the white background and you see the image of Jesus... it's like that except it happens with just a minute of looking at something.
Trails - Passing cars, people, passing lights, etc., cause a faint trail to follow the object.
Starbursts of light - This happens at random times, patriotic red, white or blue circle will appear in my vision for a split second and then disappear.
Veins in eyes - If I move my face to where the sun is to the left or right of my face it will project the veins inside my eye to appear before my eyes. So it just looks like a bunch of tree branches in my vision basically, but a strange color.
Floaters - I have tons of floaters in both eyes as well as liquid that just moves around every time I move my eyes.
Dripping liquid - in one eye I can see what appears to look like a tiny, tiny chain and I can see something that drips from below it. I believe it's just the blood flowing through a vessel in my eye because it goes a long with my heart beat.
Throbbing veins - After exercising I notice my visual static is pulsating with my heart rate causing me to see veins in my eyes that are pulsating.
Kaleidoscope vision- At night when my eyes are closed if I concentrate hard enough I can see purple shapes forming. I am not convinced however that this only happens in VS.
Flip book peripheral vision - This is one of my most bothersome and anxiety provoking symptoms. Anything in my peripheral vision will appear to move like a flip book comic book. Everything kind of skips along in frames or still shots. If I am sitting at a light and I am looking straight ahead, I can see cars pass by and they will skip along and the rims of their cars will do the same thing. They stand out even more to me because of the contrast of the wheels. When I drive in a car it's awful for me because all of the lines in the road are doing the same thing, skipping towards me. Not many VS'ers have this symptom. I believe it stems from the Occipital part of the brain which is there part of the VS is happening. Also, if I follow a moving car with my eyes, the yellow or white lines on the road will cause the same illusion to where it looks like a flip book or a light turning off and on very quickly. This can happen while riding my bike and seeing the side walk in my lower peripheral vision, or looking out at the trees and anything in my lower peripheral or upper (birds) will do the same. Also walking can cause it too with the side walk.
Dizziness - I was first diagnosed with bilateral vestibulopathy because of the dizziness, but again I believe this is from the VS causing issues in the Occipital area of the brain which helps the body maintain balance. The dizziness can be random, but is usually provoked by some form of visual stimulation like driving over a bridge that leaves little visibility of the ground, large video screens with lots of movement, fast moving cars, etc.
Basilar migraine - These also cause dizziness for me right before the migraine hits, during and after. I usually get the migraines when my hormones start fluctuating in preparation for that time of the month. I am quite the lucky one :)
Brain fog/Depersonalization - This was one of my first symptoms along with the dizziness. This symptom got a lot better! I hope that is reassuring for some that have it very prominently. I know that I am not 100% feeling like I used to be, but I don't want to be who I used to be. I do not like who I used to be. I found that fighting the feeling was the worst thing to do. Eventually it will start to fade and you will find some part of yourself and go with it.
Tiredness - I blame a lot of this on either taking the migraine medication, Verapamil, or after effects of migraines/dizziness. It's funny because any time I start back on the medication I start getting a general feeling of being 'Unwell", but if I stop the medication then I get daily migraines. This is a lose-lose situation for me.
Lack of motivation - What can I say.... this could be labeled as depression I guess. I just don't feel like doing much. I mean my brain tells me I can and I want to, but my body just doesn't want me to move. I hate that! I used to wake up every morning and I wanted to go, go, go. I guess now I am just so scared that I will get a migraine or worse, get dizzy, that I have trained myself not to go do anything. There is nothing worse for me than to go somewhere far away from my home and start to get dizzy. It's very unsettling and scary.
Wiggling of straight lines - Have you ever strummed a guitar and seen on the strings look? That is what happens to me if I look at certain patterns or straight lines. The white strip running along my corgi/pit mix's nose will do this at times. Shadows from trees on the ground, bumpers on cars and even pictures of people, tress, etc., will all do this to me.
Shaking text - Sometimes when I read small print (I have given up reading books because of this, unfortunately, as I used to LOVE reading) with each movement of my eyes from word to word the text will quickly vibrate or shake for a split second, every single time. I haven't really found many people, if any who has this happen. One person posted about it on a Dr.'s site where you can ask questions. They left no contact information so I have no idea what her diagnosis was. I am wondering if this has anything to do with my exotropia or far sightedness or maybe I am near sighted now, I have no idea, but it's weird.
I see ants - When reading I also see what appears to be little tiny marching ants under each word. I have learned to block this out and it does not bother me.
Light sensitivity - I wear sun glasses everywhere. I am even more sensitive to fluorescent lighting like that in grocery stores. I sometimes even wear a hat with the glasses - yes I get weird looks and I am sure security keep me on close watch, but hey, what can I do?
Sound sensitive - I believe since getting the migraines I am more sound sensitive. Sometimes loud noises literally shake my brain, or so it feels that way.
No depth perception - This isn't as bad as it was before, but I sometimes still have moments where I will drive and everything will look flat. I know this can happen in depersonalization too, but I know what DP feels like and it's never happened then. I am very, very afraid of heights and I believe it has something to do with this.
Anxiety - I have great irrational fears. I say irrational because they are. If I look up at the sky I will feel like I am falling. I believe this is from the anxiety, but not sure. For the longest time I didn't want to leave my house because I feared the gravitational pull would stop and I would float off into space. CRAZY THOUGHTS!! I am for the most part okay with this now only because I have convinced myself that if this happened I would probably pass out pretty quickly and not realize the moment I would die (Wow, that sounds awful). Also, not to mention, the planet has been around for billions of years. :)
Poor night vision - As soon as the sun starts going down and there is a great amount of blue light being emitted, for some reason this affects me. My eye balls literally start feeling like they are full of pressure. I will sometimes even get a migraine from this. Therefore, I never stay out long enough to witness this and I am fine once it passes and is just dark. Then the only thing that bothers me is the static and the trailing from lights. Oddly enough when I am in my house looking out the window and the sun starts going down, the blue light looks beautiful and I really enjoy it. It's just something about being exposed to it, maybe? Way beyond what my brain can comprehend or figure out.
That is all that I can recall for the time being. If I can remember anything else I will add it.
If you can imagine, the thought of possibly getting a treatment for all of these symptoms.... it brings lots of emotions - excitement, doubt and then more excitement. I am lucky to have a group of friends who lift me up when the doubt tries to take over. The day that there comes a successful treatment is the day I book a trip to England. It will be so freeing - I can taste it on my tongue!!!! God willing, that will happen!
xo
Candi
Static - throughout my entire visual field (more apparent at sun down or in the dark). It resembles what you would see on a T.V. with bad reception.
After images - If I look at anything bright or anything light on a bright background or vise versa I will see a faint outline of whatever it was I was looking at. We've all seen the picture that circulated on the internet with the outline of Jesus which you are to stare at for 20 seconds or so and then look at the white background and you see the image of Jesus... it's like that except it happens with just a minute of looking at something.
Trails - Passing cars, people, passing lights, etc., cause a faint trail to follow the object.
Starbursts of light - This happens at random times, patriotic red, white or blue circle will appear in my vision for a split second and then disappear.
Veins in eyes - If I move my face to where the sun is to the left or right of my face it will project the veins inside my eye to appear before my eyes. So it just looks like a bunch of tree branches in my vision basically, but a strange color.
Floaters - I have tons of floaters in both eyes as well as liquid that just moves around every time I move my eyes.
Dripping liquid - in one eye I can see what appears to look like a tiny, tiny chain and I can see something that drips from below it. I believe it's just the blood flowing through a vessel in my eye because it goes a long with my heart beat.
Throbbing veins - After exercising I notice my visual static is pulsating with my heart rate causing me to see veins in my eyes that are pulsating.
Kaleidoscope vision- At night when my eyes are closed if I concentrate hard enough I can see purple shapes forming. I am not convinced however that this only happens in VS.
Flip book peripheral vision - This is one of my most bothersome and anxiety provoking symptoms. Anything in my peripheral vision will appear to move like a flip book comic book. Everything kind of skips along in frames or still shots. If I am sitting at a light and I am looking straight ahead, I can see cars pass by and they will skip along and the rims of their cars will do the same thing. They stand out even more to me because of the contrast of the wheels. When I drive in a car it's awful for me because all of the lines in the road are doing the same thing, skipping towards me. Not many VS'ers have this symptom. I believe it stems from the Occipital part of the brain which is there part of the VS is happening. Also, if I follow a moving car with my eyes, the yellow or white lines on the road will cause the same illusion to where it looks like a flip book or a light turning off and on very quickly. This can happen while riding my bike and seeing the side walk in my lower peripheral vision, or looking out at the trees and anything in my lower peripheral or upper (birds) will do the same. Also walking can cause it too with the side walk.
Dizziness - I was first diagnosed with bilateral vestibulopathy because of the dizziness, but again I believe this is from the VS causing issues in the Occipital area of the brain which helps the body maintain balance. The dizziness can be random, but is usually provoked by some form of visual stimulation like driving over a bridge that leaves little visibility of the ground, large video screens with lots of movement, fast moving cars, etc.
Basilar migraine - These also cause dizziness for me right before the migraine hits, during and after. I usually get the migraines when my hormones start fluctuating in preparation for that time of the month. I am quite the lucky one :)
Brain fog/Depersonalization - This was one of my first symptoms along with the dizziness. This symptom got a lot better! I hope that is reassuring for some that have it very prominently. I know that I am not 100% feeling like I used to be, but I don't want to be who I used to be. I do not like who I used to be. I found that fighting the feeling was the worst thing to do. Eventually it will start to fade and you will find some part of yourself and go with it.
Tiredness - I blame a lot of this on either taking the migraine medication, Verapamil, or after effects of migraines/dizziness. It's funny because any time I start back on the medication I start getting a general feeling of being 'Unwell", but if I stop the medication then I get daily migraines. This is a lose-lose situation for me.
Lack of motivation - What can I say.... this could be labeled as depression I guess. I just don't feel like doing much. I mean my brain tells me I can and I want to, but my body just doesn't want me to move. I hate that! I used to wake up every morning and I wanted to go, go, go. I guess now I am just so scared that I will get a migraine or worse, get dizzy, that I have trained myself not to go do anything. There is nothing worse for me than to go somewhere far away from my home and start to get dizzy. It's very unsettling and scary.
Wiggling of straight lines - Have you ever strummed a guitar and seen on the strings look? That is what happens to me if I look at certain patterns or straight lines. The white strip running along my corgi/pit mix's nose will do this at times. Shadows from trees on the ground, bumpers on cars and even pictures of people, tress, etc., will all do this to me.
Shaking text - Sometimes when I read small print (I have given up reading books because of this, unfortunately, as I used to LOVE reading) with each movement of my eyes from word to word the text will quickly vibrate or shake for a split second, every single time. I haven't really found many people, if any who has this happen. One person posted about it on a Dr.'s site where you can ask questions. They left no contact information so I have no idea what her diagnosis was. I am wondering if this has anything to do with my exotropia or far sightedness or maybe I am near sighted now, I have no idea, but it's weird.
I see ants - When reading I also see what appears to be little tiny marching ants under each word. I have learned to block this out and it does not bother me.
Light sensitivity - I wear sun glasses everywhere. I am even more sensitive to fluorescent lighting like that in grocery stores. I sometimes even wear a hat with the glasses - yes I get weird looks and I am sure security keep me on close watch, but hey, what can I do?
Sound sensitive - I believe since getting the migraines I am more sound sensitive. Sometimes loud noises literally shake my brain, or so it feels that way.
No depth perception - This isn't as bad as it was before, but I sometimes still have moments where I will drive and everything will look flat. I know this can happen in depersonalization too, but I know what DP feels like and it's never happened then. I am very, very afraid of heights and I believe it has something to do with this.
Anxiety - I have great irrational fears. I say irrational because they are. If I look up at the sky I will feel like I am falling. I believe this is from the anxiety, but not sure. For the longest time I didn't want to leave my house because I feared the gravitational pull would stop and I would float off into space. CRAZY THOUGHTS!! I am for the most part okay with this now only because I have convinced myself that if this happened I would probably pass out pretty quickly and not realize the moment I would die (Wow, that sounds awful). Also, not to mention, the planet has been around for billions of years. :)
Poor night vision - As soon as the sun starts going down and there is a great amount of blue light being emitted, for some reason this affects me. My eye balls literally start feeling like they are full of pressure. I will sometimes even get a migraine from this. Therefore, I never stay out long enough to witness this and I am fine once it passes and is just dark. Then the only thing that bothers me is the static and the trailing from lights. Oddly enough when I am in my house looking out the window and the sun starts going down, the blue light looks beautiful and I really enjoy it. It's just something about being exposed to it, maybe? Way beyond what my brain can comprehend or figure out.
That is all that I can recall for the time being. If I can remember anything else I will add it.
If you can imagine, the thought of possibly getting a treatment for all of these symptoms.... it brings lots of emotions - excitement, doubt and then more excitement. I am lucky to have a group of friends who lift me up when the doubt tries to take over. The day that there comes a successful treatment is the day I book a trip to England. It will be so freeing - I can taste it on my tongue!!!! God willing, that will happen!
xo
Candi
Thursday, June 5, 2014
Why we have doubts
This is something I have dealt with ever since getting this stinking condition. I have always doubted that I would get better. I've always thought, however, that everyone else would get better. Am I the only one? It isn't that I feel undeserving or anything like that, it's more like "my condition is much worse and not fixable whereas yours is!" Now that just isn't right, is it?
I just came across this online: "If you ever arrive at a place where all your doubts are gone and all your questions are answered, take a deep breath and relax because you’ve arrived in heaven."
I guess that is reassuring looking at it from a fellow Christian's (and a pastors) perspective. I am the queen of self doubt (PERIOD). I've always felt like I wasn't a good example of a Christian because of all the doubt I am filled with. I am a very scientific person as well and that sometimes doesn't mix well. I have always had to see things to believe it and I have the type of brain that likes to ponder complex things and figure things out. At a very young age (5 or 6) I would lay in bed at night thinking about what happens after we die, how the world was made, etc. Had I been exposed to the church then, I would have had all of the answers I needed, but I wasn't.
With all that said, I hate being labeled as some uptight Christian who looks down on everyone else, because it just isn't true. I struggled with an eating disorder before I was a teenager and for the longest time had no self worth. Becoming a Christian saved me from more than most can imagine. I am very grateful for it. I would like to say that I think of myself as equal, but I know there are times when I slip up with that as well - that is where doubt comes in to play....
I guess what I am trying to say with all of this is.... I have been struggling lately with doubting that I will get a successful cure/treatment for myself. Even thought I was in the study and had the same results as everyone else, I just still put myself in that category and I hate that. I want to be so positive that I will get a second chance because it just feels so good to imagine myself being free from this prison of a condition, but that doubt robs me of those freeing thoughts.
Getting that email from Dr. Schankin where he mentions several treatment options gave me a boost that I hadn't felt in a very long time. I wish I could stay on that high that it created in me. Maybe I need to re-read it and know that I was in the study and I am just the same as everyone else.... just different brain chemistry, same condition.....
::Added after original post:: I just wanted to note that I am not doubting my faith in God in this post. I am sorry if I came across that way. By all means I don't think any of us would be where we are now (Having had a study completed and a treatment on the way) had it not been for prayer and many others faith. My faith lies in God and it will always be that way. It helps me get through each day. Even after I/We get a treatment, I will continue to pray to God and ask for guidance and whatever else may be on my heart.
Lord, help me to help myself. Take this self doubt from me and bring me to a state of confidence in knowing that you paid the ultimate price so that I can be here today. Also help me to have faith that I will be free of this condition very soon as well as everyone else suffering.
Amen!
Monday, June 2, 2014
Patiently waiting.... patiently sad..
You would think that the news of the Dr.'s finding an answer to all of this madness would be enough to keep me happy, and don't get me wrong it has ignited a flame in me, but I can feel the flame fading.
I have come this far, right? I should be able to keep strong and be patient until a treatment comes through. I mean I received the email myself from Dr. Schankin stating that they were looking into several treatments, so I know it's going to happen. I know how dedicated Dr. Goadsby and Dr. Schankin both are, so you would think that alone would be sufficient. So why have I been growing increasingly sad the past few weeks?
I've been thinking more and more about the locations in the brain where this is taking place and it makes perfect sense why I am so bothered with driving. And why at times I feel like I am either leaning to one side, off balance or feeling like I am going to fall into the sky. I guess I am just so tired of feeling this way. I have progressively gotten worse over the course of a few years. I have heard of some getting worse, but usually it's with the static portion of VS, mine had been bizarre symptoms that only a few VS'ers have.
Listen to me complaining.... how can I complain when there are so many others out there who have serious conditions and NO ONE researching them!!! I should feel so grateful, and believe I do, for getting an answer. I guess somewhere in my messed up brain I just keep thinking, what if? What if treatment doesn't work for me and I get progressively worse still. I hate thinking that way. God has brought me this far and so he will see me through it, I just have to keep reminding myself of that.
I often try to reminisce about what it's like to feel fully connected and whole. To see normally and think normally. Every now and then I get a glimpse of it and it feels so great, but it gets replaced so suddenly with emptiness......
I plan on travelling, I know I have said this time and time again, but I promise, once this is over for me I am travelling. This gives me so much hope. I have actually written down the places I want to visit and have looked up hotels, etc. I plan on wearing a "I survived VS" shirt and spreading the word as well. Who knows, maybe along the way I will meet someone who has it and had no idea about the Facebook page, the Doctors, the research and the treatment. I know there is SOME reason why I got this stuff, I just know it. For the longest time I felt like it was to write a book, but let's face it, I'm not that great at that, so maybe it is through travelling and spreading the good word....?!?
My favorite outlet was always driving.... right now I am so afraid of it. I am ending this post with a vision that I hope to one day be able to bring to fruition:
"After my plane lands in the UK I will pick up a convertible rental car in any available color, I just want to feel the wind or the rain on my face. (Most likely this will be rain - did I even mention I LOVE the rain!!) There are a few places I want to visit - London, Essex, and then I want to go up to Scotland. I want to stand on the edges of cliffs without fear. Once my depth perception is back in working order, I should be so scared of falling off the edge. I want to also take the time to travel through Europe via train! I would love to all of this with my son and husband, but my husband isn't too interested in this.... So I may be doing it alone, but I don't mind.... I've felt alone in this condition for quite some years now.... I can handle fulfilling my dream on my own, but who knows, maybe he will change his mind :)
God bless you all! I hope that one day soon I will have my final post on visual snow because of successful treatment and will be starting a new blog on traveling.
Love,
Candi
I have come this far, right? I should be able to keep strong and be patient until a treatment comes through. I mean I received the email myself from Dr. Schankin stating that they were looking into several treatments, so I know it's going to happen. I know how dedicated Dr. Goadsby and Dr. Schankin both are, so you would think that alone would be sufficient. So why have I been growing increasingly sad the past few weeks?
I've been thinking more and more about the locations in the brain where this is taking place and it makes perfect sense why I am so bothered with driving. And why at times I feel like I am either leaning to one side, off balance or feeling like I am going to fall into the sky. I guess I am just so tired of feeling this way. I have progressively gotten worse over the course of a few years. I have heard of some getting worse, but usually it's with the static portion of VS, mine had been bizarre symptoms that only a few VS'ers have.
Listen to me complaining.... how can I complain when there are so many others out there who have serious conditions and NO ONE researching them!!! I should feel so grateful, and believe I do, for getting an answer. I guess somewhere in my messed up brain I just keep thinking, what if? What if treatment doesn't work for me and I get progressively worse still. I hate thinking that way. God has brought me this far and so he will see me through it, I just have to keep reminding myself of that.
I often try to reminisce about what it's like to feel fully connected and whole. To see normally and think normally. Every now and then I get a glimpse of it and it feels so great, but it gets replaced so suddenly with emptiness......
I plan on travelling, I know I have said this time and time again, but I promise, once this is over for me I am travelling. This gives me so much hope. I have actually written down the places I want to visit and have looked up hotels, etc. I plan on wearing a "I survived VS" shirt and spreading the word as well. Who knows, maybe along the way I will meet someone who has it and had no idea about the Facebook page, the Doctors, the research and the treatment. I know there is SOME reason why I got this stuff, I just know it. For the longest time I felt like it was to write a book, but let's face it, I'm not that great at that, so maybe it is through travelling and spreading the good word....?!?
My favorite outlet was always driving.... right now I am so afraid of it. I am ending this post with a vision that I hope to one day be able to bring to fruition:
"After my plane lands in the UK I will pick up a convertible rental car in any available color, I just want to feel the wind or the rain on my face. (Most likely this will be rain - did I even mention I LOVE the rain!!) There are a few places I want to visit - London, Essex, and then I want to go up to Scotland. I want to stand on the edges of cliffs without fear. Once my depth perception is back in working order, I should be so scared of falling off the edge. I want to also take the time to travel through Europe via train! I would love to all of this with my son and husband, but my husband isn't too interested in this.... So I may be doing it alone, but I don't mind.... I've felt alone in this condition for quite some years now.... I can handle fulfilling my dream on my own, but who knows, maybe he will change his mind :)
God bless you all! I hope that one day soon I will have my final post on visual snow because of successful treatment and will be starting a new blog on traveling.
Love,
Candi
Subscribe to:
Posts (Atom)