Thursday, December 18, 2014
Dizziness
Since mid October I have been dealing with a sporadic case of dizziness. It literally comes on at the most random of times. At first I thought it was BPPV because I noticed it after I would take my shower and I figured when I put my hair in the towel that it was setting it off. Well here I am back from my sons school play and I feel like I am rocking back and forth on a dang boat! I am beginning to think it's my nervous system... or should I just say brain related. I did just spend the past hour underneath awful fluorescent lights and spent 10 minutes in the car enduring my husbands driving. Either way... this isn't normal and it freaking sucks. On top of that my eyes hurt!!! On the drive home we took a side street to see some Christmas lights and I felt like I wanted to rip my eyes out!! I am having doubts about ever getting over this mess and that just puts me in a very, very dark place. It certainly isn't a way of life... I hate watching everyone else go on with their life while I am barely living... merely existing. I am beginning to wonder if I should be taking Xanax or something to calm down my nervous system?......
Wednesday, November 26, 2014
The nightmare continues and other updates....
It's been quite some time since I last posted. A lot has been happening the past few months with my symptoms. A little over a month ago I started getting a new type of dizziness that wasn't provoked while in a car. It started one night when my husband and I were doing a bedtime prayer with my son. I remember sitting up after bending down and just feeling off. I can't remember what had happened that morning, like a long car ride to a Dr.'s appointment... it's been too long to remember. It left me shaking and nauseous, which caused me to vomit. It eventually passed long enough for me to go to sleep even though I still felt some residual rocking. Anyways... I figured it would pass by the time the morning came.... I was wrong. Fast forward to a few weeks later, I finally went to see an ENT to ask him about it and also see about my allergies which had been driving me nuts. He said it sounds like BPPV and that possibly the previous inner ear damage, which had compensated before, may be causing some issues as well. He sent me home with some exercises to do for BPPV as he didn't know how to do the epley maneuver.... lucky me. I also was advised to get some sublingual allergy drops to help me adjust to the atrocious amount of allergies I have.
The next day I did the epley on myself which left me feeling a little worse (my normal was a sensation of rocking when still) like I was constantly swaying and needed to keep moving in order to feel fine. In my research you would think this was something called MdDS (Mal de Debarquement Syndrome) which usually happens after a cruise, airplane ride, train ride or long car ride. Neither of these would have applied to me.... So it just doesn't fit. I specifically remember prayer time with my family and then feeling off. I can also recall a month prior getting up fast out of a recliner and looking down and getting the same dizzy sensation which lasted for a little while. Go back a few months prior to that episode and I recall parking in the grocery store parking lot up the street and looking down for a brief second while the car was still in motion and it left me off. I went to my neuro otologist for that one and he treated me for BPPV... I went twice within a week and a couple of days after the 2nd visit it went away. So yea.... a month of this stuff has been torture and nerve wracking and .... I really should just go see the neuro otologist again and have him to the epley on me. I was doing great a few days ago and felt completely fine... then yesterday I did the BPPV exercises and I have been having some issues ever since. It isn't as bad as it was by all means, but still bothersome to say the least. If I sit still I feel a slight sway at moments, almost like I am constantly in motion.
Okay, so on to the other stuff.... the stuff that really leaves me trapped within a short radius of my home. My peripheral vision.... For now I have self diagnosed myself with Peripheral Akinetopsia. None of my doctors know anything about it at all. They've only briefly heard about it (I am guessing in text book or case studies). My neuro ophthalmologist said he has on heard of it in people with brain disorders (physical issues such as stroke or Alzheimer's - none of which I have had or have). I have no physical proof to show that I have an issue in my brain, other than the studies produced by Dr. Peter Goadsby and Christoph Schankin which showed Hypermetabolism of the Right Lingual Gyrus and and the left cerebellar anterior lobe adjacent to the left lingual gyrus. Fortunately for me, I was in that study so I know it applies to me. Unfortunately for me, however, I did not have this peripheral symptom them. And again fortunately for me I do know of another fellow Visual Snow sufferer who does have this same symptom and had the same symptom when she was in the study. So.... what this means for me, I have no idea because not everyone with Visual Snow has this symptom and for those that do, they are usually either in their central vision, in both central and peripheral or just not phased by it, which tells me theirs just isn't as bad as mine, like some Visual Snow sufferers have different levels of density with their visual static or afterimages or trails. We are all different and this is my WORST symptom. My quality of life is zero at the moment. I am 32 and physically I am homebound for the most part and feel like I am 80 years old. This isn't right and if I just accepted this as my new life what would that mean? It would mean giving up. It would mean if someone else in the near or distant future had this same exact thing happen to them they would be in my same boat.... hopeless. My husband doesn't deserve this life, nor does my son. They didn't choose someone who would be disabled to be in their life... and I don't want that either. I have to figure this out... even if it means just having proof that there is something wrong with my peripheral vision.
So... I did some research when I could and eventually came across a few different studies on Akinetopsia done by a physicist named Professor Semir Zeki. I figured I would take the chance of emailing him about myself and what I am experiencing and see if he may reply and give me some insight. A day passed and I received nothing so I figured it was probably an old email.... then low and behold the next day I received a reply. Professor Zeki and I wrote back a couple of times and he asked if I had had any functional scans done and mentioned one I had never heard of before... a magnetoencephalography A.K.A. MEG. I quickly googled it and seen that it is a machine that actually shows real time actions in the brain while being subjected to movement. I had never heard of something like this, but had mentioned me needing this type of test to several others... which no one had ever even mentioned this. It makes me a little angry that no one in the medical field has mentioned this. Regardless of what insurance regulates... this is MY life. I am not a patient number printed on a white label with a barcode to scan... I am a 32 year old woman, wife, mother of a 4 year old child who is HOUSEBOUND for goodness sake. This isn't fair. I don't want to say that I deserve anything more than the next person, but you would expect the freedom to move about on your own in this world comfortably and not tormented by movement. My heart aches inside every single day with the thoughts of what I want to do, but can't. For instance... last month I couldn't join my husband and son on a trip to Michigan to see my mother in law get married. I will not be in those family photos. Right this second my husband and son are driving up to Walmart which is a few miles away to pick out a prize for my 4 year old who just wrote his name out all by himself. I should be there, but I can't. Worse than driving the distance is the fact that it's night time and I can't see at night... that is something I can live with though... it's this other stuff that tops it all.
So back to the story... I contacted my neurologist and let her know about the test. She contacted the radiology department, who replied back to her, which she replied back to me, to let me know they do not have such a scan there and listed two out of state places which may have it. I contacted the closer of the two, Emory, in GA. After that I did a google search and found a place in a city below me. I also seen where my own Neuro Ophthalmologist is affiliated with them. So my next course of action is to visit him and see if we can get the scan done. Talk about taking the bull by the horns. People... I tell you this now. Once this is all said and done for me.... if, God willing, there is a cure for Visual Snow and maybe this peripheral stuff goes away, something has to be done for people like me... people in this same boat. It should not be this hard to get tests. I shouldn't have to pull teeth to get answers. Doctors should know what the problem is. It shouldn't be a case of "It's so rare I don't know what to do." NO, NO, NO!! It should be... "I'm terribly sorry you are going through this. This is a rare phenomenon that you are experiencing and we are going to get in touch with the best doctors for it." Come hell or high water I am determined to get myself out of this nightmare and help others... with or without the same condition, to get pointed in the right direction.
Lord, let the nightmare cease.... Point me in the right direction for answers and resolution of this condition. I pray for a treatment for Visual Snow to come out of the upcoming study being done in the United Kingdom and for complete resolution of everyone's Visual Snow symptoms, including myself. I pray that I am able to get the MEG scan done and that answers come from it. Please help me find a way to ease the peripheral symptoms if not dissolve them completely.
Always in Jesus' name - Amen!
Wednesday, October 29, 2014
New sudden onset of intermittent dizziness
I was diagnosed with BVL (Bilateral Vestibular Loss) back in 2012. I went to rehabilitation for that and got a lot better.... of course I think all of that therapy some how made my visual symptoms worse because I was left with this peripheral hell..... Anyways.... I always questioned whether the diagnosis was correct because anytime I researched the symptoms... they never fit. I had only been getting symptoms when in cars.... never dizzy at night, never walked with a wide stance.... nothing fit. I was told by another doctor that it is most likely the Vestibular Migraine (Basilar Migraine) that I was diagnosed with since I am usually VISUALLY off balance. Like if I were in the car at a light and all the cars were going one way and I was watching this.... All hell would break loose in my brain and I would feel like I was rotating. Yeaaaaaaaa, it sucks...
Any ways... recently I started noticing some dizziness here and there. It would come at random times and nothing like I had previously. For example: I have to take my son to school in the mornings, which is right down the road, and within this short time I will feel like the car is on a slant, or like I am walking on an uneven surface, etc. when I am walking him to his class. I would brush it off for the most part... I've dealt with far worse daily than that..... BUT... for the past week it's gotten progressively worse. One night I had dizziness so bad I threw up and was left getting dizzy with every beat my heart was making. It was like being shoved over and over and over again. If my husband made a slight movement on the bed it would get worse. I literally had to sit on the floor (crying like a baby) and just pray that it would pass. Eventually it did and I was able to go to sleep, but I kept waking up (and still do) every hour on the hour anticipating dizziness or feeling dizzy. Every few days I seem to get a small break from it, but then it comes back. This started around Oct. 14th and has continually gotten worse.
At this moment I feel like my head is rocking... like I am on a boat, but it's making my head move instead of my body. I did make an appointment to see my old dizzy dr./allergist to see his take on all of this. I really hope God gives this Dr. some kind of push into the right direction as to what is going on with me, because I know just from my own research it could be any number of things.....
Just another symptom to add to my list..... I often ask myself how much can a human being take. If I were an animal...I would have already been put down, right?....
Saturday, August 30, 2014
Visual Snow Awareness Campaign Video
I created this video to help raise awareness for Visual Snow.
For anyone who is viewing my blog for the first time today because of this video, I encourage you to watch the video completely and then start from my original post from 2010. You can see how long this journey has been and get an idea of what just one person, out of thousands of others with this rare condition, is going through. This is why we need your help to get this video out there and to educate the general public about this condition. We need funding www.gofundme.com/visual-snow so that we can raise the money needed to start the next phase of the study. We having willing and ready researchers who have already completed one study.... help us get to the next study so that we can get the treatment needed to halt this progressing syndrome.
You can learn more about Visual Snow by visiting www.eyeonvisionfoundation.org.
A second video of me talking about my condition:
Monday, August 25, 2014
Explaining an invisible illness....
This past Sunday I was presented with a challenge. Actually the past several Sunday's I have been presented with this same challenge. You see, along with the Visual Snow and it's crazy amount of weird neurological symptoms, I've seemed to have acquired some other weird symptoms.... while singing. I've always loved singing... I'm decent at it and enjoy it, so on Sundays at church I use that time to belt out some of my favorite songs that the band is singing. As of late however I have been having some odd symptoms. It seems as soon as I start singing my heart begins to beat out of my chest and I start to become faint... I literally have to stop singing, grab a drink and try to breathe. I have no idea why this is happening. I have tried to point my finger at it being nerves, but that's ridiculous because it's not like I am standing on the stage. Anyways, so I became faced with a challenge when I began to feel faint. I decided I was going to sit down, but first I looked around the room. I saw two other people sitting, one who was about 8 months pregnant and the other with an apparent broken back... I decided to stand. I couldn't allow myself to get into a position where I would have to explain what was happening to me. Wow, how ironic is that? I have a condition that very little know about and here I can't even speak out about it. How can I expect anyone to ever understand the condition, let alone donate to the gofundme page to raise enough funds for the next phase of research?
Maybe it's pride? I am sure it's pride. I've spent years and years trying to stand out from everyone else and now I do because I am different and I so badly want to blend in. I just want to be normal and not judged that I am not like everyone else. I have something wrong with my brain. The truth is... I look normal on the outside, so I don't think any of my previous statements are rational.... it's very much irrational to think that way.....
I did however experience a situation where the same person I've already told about my issues asked me to join her at the same function I already told her once that I could not attend because it was at night. She used the same responses she did last time stating she would drive, etc. I gave her the same answers as well. Needless to say it's very unlikely that she retained any information about my condition because... how do you explain an invisible illness when, in her own words, "You look so normal!".......
Maybe it's pride? I am sure it's pride. I've spent years and years trying to stand out from everyone else and now I do because I am different and I so badly want to blend in. I just want to be normal and not judged that I am not like everyone else. I have something wrong with my brain. The truth is... I look normal on the outside, so I don't think any of my previous statements are rational.... it's very much irrational to think that way.....
I did however experience a situation where the same person I've already told about my issues asked me to join her at the same function I already told her once that I could not attend because it was at night. She used the same responses she did last time stating she would drive, etc. I gave her the same answers as well. Needless to say it's very unlikely that she retained any information about my condition because... how do you explain an invisible illness when, in her own words, "You look so normal!".......
Saturday, August 16, 2014
At war with my mind
I woke up this morning at 5:20ish AM... I can't even tell you what I dreamt about because I can't remember. The only thing I know is upon opening my eyes I was greeted with the hellish reminder of my condition. The first thing I usually see is the rotating fan above me that appears to move in scenes every single time my eyes move. This symptom is called Akinetopsia - or better known as motion blindness. I know I have talked about this before, but I am talking about it again because, well, this is my blog and I'm pissed off!
Akinetopsia is very rare.... Visual Snow is very rare. There was a study that came out not too long ago called Palinopsia Revamped. The study talked about Palinopsia, which is usually explained as seeing trails behind moving objects such as a persons hands or a moving car. I have been experiencing this since 2009. I even remember seeing a trail behind my hand one time as a teenager, but my thought was "wow, that's pretty cool" and I never gave it another thought and never seen it again until 2009. This article touches on Akinetopsia and categorizes it as another form of Palinopsia. That was a relief for me to see because it meant, to me, that I wasn't dealing with something else along with my Visual Snow. It even mentions how Palinopsia often times goes along with Visual Snow.
The person/doctor/researcher who published this study was not anyone I have ever heard of, but they did a good job researching everything and putting it together. I just wish their was an explanation. I am so tired of the studies coming out telling everyone, "Hey, this rare condition exists", but not giving anyone a hint of how to fix it. I know what I have is rare.... Disability for some reason doesn't think that. To them I am a free loader who is capable of working. That is a whole other topic.....
Back to my original rant. I woke up at 5:20ish and well, ya know, it just sucks to have my first thought of the day to be about how I hate having to deal with this condition. It shouldn't be that way. Things like suicide and trekking on with my life, sucking it up and dealing with it... those thoughts shouldn't ever cross anyone's mind. How is it that we live in a world today where they've sent people to the moon, but yet I have to wake up and feel this way because I have been isolated in a condition that no one understands. Neurologists are so quick to dismiss you because you have something they don't want to deal with so they want you to be strong and deal with it. I AM NOT CAPABLE ANYMORE!!! I am TIRED of seeing all of these normal people hang out with their friends and family and laugh and share stories about their nights and the things they get to do when I am a prisoner of my own FU#@ING BODY AND MIND!!!! I am 32... I have wasted 7 years of my life with this condition. I have lost countless numbers of friends because I am not capable of having a normal life like them. I can't drive far, I can't drive at night, let alone see at night. I am a body that looks so freaking normal on the outside, but am being tortured every second that I am awake.
I was explaining to my church group last Wednesday about my condition after someone asked and a woman next to me asked me to come to a Mary Kay event with her at 6:00 PM the following Monday. After I explained it to the group the same woman looked at me and said, "Well you look normal!" This is the response that I get time and time again. It literally feels like this is punishment of some sort. Like I am living in actual HELL. I don't see Satan and it may not be hot, but believe me, it's Hell!
My one release..... driving... I can no longer do. The cars and their tires, they do the same as my ceiling fan. Bits and pieces of the scene.... it also makes me dizzy to see this. Yet... I appear normal, so therefore I am normal........
I have never kept my faith a secret.... It's hard... it's hard believing in an all loving and compassionate God, while I am allowed to go through this. I know there are so many more who are going through worse, and that is a reminder to me that we are in a temporary place and temporary body.... It just angers me. Why couldn't I be healthy.... and this condition be placed on someone less deserving like a criminal of some kind... a murderer. Why is this happening to me? Why does my son have to have a mother who can't do everything that someone else's mother can? Why does my husband have to have a wife like me who can't do the things he wants to do... and hell, all the things that I want to do? It just doesn't make sense to me. I just want it to make sense... I want the answers.
The study isn't happening at all right now.... we are waiting for it to happen, but it won't until we raise the $50,000.00 needed. Until then.... this is what I go through, and countless others. We wait.... life keeps passing us up... yet we wait.
Akinetopsia is very rare.... Visual Snow is very rare. There was a study that came out not too long ago called Palinopsia Revamped. The study talked about Palinopsia, which is usually explained as seeing trails behind moving objects such as a persons hands or a moving car. I have been experiencing this since 2009. I even remember seeing a trail behind my hand one time as a teenager, but my thought was "wow, that's pretty cool" and I never gave it another thought and never seen it again until 2009. This article touches on Akinetopsia and categorizes it as another form of Palinopsia. That was a relief for me to see because it meant, to me, that I wasn't dealing with something else along with my Visual Snow. It even mentions how Palinopsia often times goes along with Visual Snow.
The person/doctor/researcher who published this study was not anyone I have ever heard of, but they did a good job researching everything and putting it together. I just wish their was an explanation. I am so tired of the studies coming out telling everyone, "Hey, this rare condition exists", but not giving anyone a hint of how to fix it. I know what I have is rare.... Disability for some reason doesn't think that. To them I am a free loader who is capable of working. That is a whole other topic.....
Back to my original rant. I woke up at 5:20ish and well, ya know, it just sucks to have my first thought of the day to be about how I hate having to deal with this condition. It shouldn't be that way. Things like suicide and trekking on with my life, sucking it up and dealing with it... those thoughts shouldn't ever cross anyone's mind. How is it that we live in a world today where they've sent people to the moon, but yet I have to wake up and feel this way because I have been isolated in a condition that no one understands. Neurologists are so quick to dismiss you because you have something they don't want to deal with so they want you to be strong and deal with it. I AM NOT CAPABLE ANYMORE!!! I am TIRED of seeing all of these normal people hang out with their friends and family and laugh and share stories about their nights and the things they get to do when I am a prisoner of my own FU#@ING BODY AND MIND!!!! I am 32... I have wasted 7 years of my life with this condition. I have lost countless numbers of friends because I am not capable of having a normal life like them. I can't drive far, I can't drive at night, let alone see at night. I am a body that looks so freaking normal on the outside, but am being tortured every second that I am awake.
I was explaining to my church group last Wednesday about my condition after someone asked and a woman next to me asked me to come to a Mary Kay event with her at 6:00 PM the following Monday. After I explained it to the group the same woman looked at me and said, "Well you look normal!" This is the response that I get time and time again. It literally feels like this is punishment of some sort. Like I am living in actual HELL. I don't see Satan and it may not be hot, but believe me, it's Hell!
My one release..... driving... I can no longer do. The cars and their tires, they do the same as my ceiling fan. Bits and pieces of the scene.... it also makes me dizzy to see this. Yet... I appear normal, so therefore I am normal........
I have never kept my faith a secret.... It's hard... it's hard believing in an all loving and compassionate God, while I am allowed to go through this. I know there are so many more who are going through worse, and that is a reminder to me that we are in a temporary place and temporary body.... It just angers me. Why couldn't I be healthy.... and this condition be placed on someone less deserving like a criminal of some kind... a murderer. Why is this happening to me? Why does my son have to have a mother who can't do everything that someone else's mother can? Why does my husband have to have a wife like me who can't do the things he wants to do... and hell, all the things that I want to do? It just doesn't make sense to me. I just want it to make sense... I want the answers.
The study isn't happening at all right now.... we are waiting for it to happen, but it won't until we raise the $50,000.00 needed. Until then.... this is what I go through, and countless others. We wait.... life keeps passing us up... yet we wait.
Monday, August 4, 2014
A day of rest
I would love to have one day that I didn't have to wake up to the realization that I have a neurological issue - that I have a rare disorder that has no known cure! It would be wonderful to be able to check my email without seeing some type of confirmation of my misfortune. I can only distract myself so much during the day to get away from this reality. I feel as though I am being punished, or literally living in a hell that I created some how. It's very odd to think that way, isn't it? Hell on earth.....
I can only hope and pray that we reach the $50,000 needed to start the research again. I also pray that the researchers will give 100% of themselves toward finding a treatment. It's bound to be out there, but it has to be found.....
I can only hope and pray that we reach the $50,000 needed to start the research again. I also pray that the researchers will give 100% of themselves toward finding a treatment. It's bound to be out there, but it has to be found.....
Friday, August 1, 2014
Missing out and fundraising
I kissed my husband and son goodbye this afternoon. They are off to a wedding in Michigan without me. I will be alone for four days. I've only been away from my son twice. Once was when I flew out to California to be in the Visual Snow study and the 2nd time was when my husband and son flew out to Michigan for Christmas. I miss out on a lot of things because of Visual Snow.
I know that 95% of those with visual snow have no issues when it comes to traveling, but as I've talked about before I recently within the past year acquired a rare symptom that sometimes comes along with visual snow and it's where I can not see fluid movement in my peripheral vision. I am fine when I am at home or at a place without fast movement, but being in a car or attempting to drive is pure hell. It almost feels like you are in a tunnel because you only have a small portion of your vision that isn't peripheral when you are driving. So things that are even farther away use even more peripheral vision and there for most of my vision is filled with movement that is only happening in fragmented scenes. I know that it isn't going to hurt me, but my brain is constantly thinking what the heck and is trying to make sense of it all.
I have still been trying for disability, but apparently unless I'm dead I'm not eligible to receive it. If you've ever seen a disabled homeless person I am thinking this may be where it all started. I should had been a baby factory a lived of the government.... I would have had a better chance at having some sort of income as apposed to getting SSI for a true disability that the folks at the social security office keep turning me down for.
Anyways, I can complain all day until my face was blue about disability and about Visual Snow, but I won't. I just want to mention for anyone who is reading my blog, if you haven't yet, please visit the Visual snow fundraising site n gofundme at www.gofundme.com/Visual-Snow and donate... even if it's $5.00 any little bit helps. We just started an instagram and will be having an auction on there soon and all proceeds will go directly to the visual snow research. The instagram user name is Help_Cure_Visual_Snow - so please add it and share it with you friends to let them know about the upcoming auction.
We need one more brain imaging study to be done and I've already been told by Dr. Schankin himself that they have several treatment options in mind, but this brain imaging study has to be done first. They've located the area in the brain and I am assuming (only assuming) that they need to look into that area further to see what treatment will work best. So, again, if you haven't yet gone, or if you are not familiar with Visual Snow and just stumbled across my page, please donate for a good cause.
God Bless,
Candi
I know that 95% of those with visual snow have no issues when it comes to traveling, but as I've talked about before I recently within the past year acquired a rare symptom that sometimes comes along with visual snow and it's where I can not see fluid movement in my peripheral vision. I am fine when I am at home or at a place without fast movement, but being in a car or attempting to drive is pure hell. It almost feels like you are in a tunnel because you only have a small portion of your vision that isn't peripheral when you are driving. So things that are even farther away use even more peripheral vision and there for most of my vision is filled with movement that is only happening in fragmented scenes. I know that it isn't going to hurt me, but my brain is constantly thinking what the heck and is trying to make sense of it all.
I have still been trying for disability, but apparently unless I'm dead I'm not eligible to receive it. If you've ever seen a disabled homeless person I am thinking this may be where it all started. I should had been a baby factory a lived of the government.... I would have had a better chance at having some sort of income as apposed to getting SSI for a true disability that the folks at the social security office keep turning me down for.
Anyways, I can complain all day until my face was blue about disability and about Visual Snow, but I won't. I just want to mention for anyone who is reading my blog, if you haven't yet, please visit the Visual snow fundraising site n gofundme at www.gofundme.com/Visual-Snow and donate... even if it's $5.00 any little bit helps. We just started an instagram and will be having an auction on there soon and all proceeds will go directly to the visual snow research. The instagram user name is Help_Cure_Visual_Snow - so please add it and share it with you friends to let them know about the upcoming auction.
We need one more brain imaging study to be done and I've already been told by Dr. Schankin himself that they have several treatment options in mind, but this brain imaging study has to be done first. They've located the area in the brain and I am assuming (only assuming) that they need to look into that area further to see what treatment will work best. So, again, if you haven't yet gone, or if you are not familiar with Visual Snow and just stumbled across my page, please donate for a good cause.
God Bless,
Candi
Monday, July 21, 2014
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.
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.
Thursday, July 10, 2014
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
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!!
Thursday, June 26, 2014
Speculations.....
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
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
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
Thursday, May 15, 2014
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
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
Tuesday, May 13, 2014
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
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
Thursday, April 10, 2014
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!
Tuesday, April 8, 2014
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.....
Thursday, March 20, 2014
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!
Thursday, February 13, 2014
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.
Saturday, February 8, 2014
Updates
So I haven't posted in a while, mainly because I have been scared as all get out over this newest symptom. I have been plaguing myself with anxious thoughts about not being able to travel, not being able to drive my son anywhere, etc., etc.
Yes, I still have those moments, like tonight, but I have been having some decent days. I did recently leave my job after 8 years and that sucked. After that amount of time you get pretty close to everyone and they start to feel like family. I miss them a lot, but I have faith that there is a reason that my journey called for leaving the company. I am now applying for disability, but not expecting to win it, why would I, they have no clue what visual snow is let alone what the heck I am going through... that is what makes this diagnosis so complicated. My own family have no clue because I look so dang healthy on the outside. Even when I have horrible migraines I still appear normal on the outside... well almost.
I guess I just wanted to come on and say... I am still here. I am still fighting this fight with an unknown opponent. I am still waiting for the results from the Visual Snow study to come out. I keep thinking... how did I get that chance to fly out and participate and more so how did I get visual snow. There has to be something good coming our way.... I can't explain it.. even on my worst days I still have a lit glimmer of hope that says we are going to get through this.
To have my life back.... a million thank-yous wouldn't suffice. A Billion tears over an indescribable joy would be where I would be left.... I try to imagine that day and make it present.
Here's to getting better!!!
God Bless,
Candi
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