It's been a while

 I can't believe how long it's been. I know over the years I've had some of you contact me for updates as well as comments looking for updates and I must confess - I turned my attention towards living instead of dwelling on symptoms. However, due to a recent increase in migraines and visual symptoms I felt I should come on here and update those who are seeking help.

My story is a long one and I suggest reading past posts to get caught up. The condenced version of my story is that I've had some variant of migraine my whole life. It's suspected that it was due to a head injury when I was a child. I had a condition for as long as I've known - Allodynia. Any time my parents would pat me on my head it would send searing pain throughout it. They never questioned it.... never sent me to a doctor for it. I just lived with it and every once in a while they'd forget about it and it would happen again. I also dealt with mysterious stomach pains - which I later found out to be a form of juvenile migraine.

Fast foward to the year 2008 - I had just gotten a new apartment and my, then, BF was moving from MI to FL to live with me. It seemed within the first couple of days I started having palinopsia. I also had issues with light sensitivity, halos, after images, etc. I ended up getting pregnant and the shit hit the fan after our son was born. The migraines were daily and soon after came the visual snow - static in my whole field of vision. Next came something called akinetopsia - everything in my peripheral vision looked choppy during movement. I was living in hell and this was 24/7. My only relief was sitting in my home watching tv. I didn't have the ability to stay home and so I worked for quite a few years with this condition. I began experiencing daily dizziness on top of the visual symptoms - as well as depersonalization. I felt as if I were on drugs and I hadn't done any drugs - let alone drank. 

I was placed on Verapamil which immediately helped with the migraines. This in turn decreased the afterimages and trailing vision for me. It wasn't completely gone, but it was manageable. I still dealt with static and the choppy peripheral vision - as well as some dizziness.

I decided it was time to be proactive about my health. At this point it was 2016... I spent 8 years with these symptoms. I had seen every doctor under the sun. I had been poked and proded too many times to count and I was done. I decided to accept the diagnosis of migraine and had been hearing about a migraine diet book. Heal Your Headache by Dr. David Buchholz. I figured I had done everything else and while I was skeptical I honestly had nothing to lose. I followed the diet with very few slip ups. I first started noticing the my dizziness was abating. I would only have minor issues right before my period started, but nothing daily like it had been for months. My migraines were becoming less frequent. I started noticing that the static wasn't as bad and the afterimages were almost gone. I was still dealing with the choppy vision, trails and depersonaliztion. 

I started doing a lot of research about the choppy vision because this seemed to be a very rare symptom amongst those who get Visual Snow. I had found some research articles on it that mentioned a doctor in the UK. I decided to email him and ask him about the rare symptom and if he had any opinions on it. He immediately told me I needed to get a MEG scan done. He said it's a more precise scan and penetrates deeper than an EEG. I had already had EEG's done and they never found anything. So, I went to my neurologist with my new found information and he ordered the scan to be done. During this time of waiting for the appointment I was also learning about a medicine called LDN (Low Dose Naltrexone). It's said to help with inflammation in the body. My neuro and I suspected neuro inflammation as it's the culprit to a lot of health conditions in the body. There isn't a lot of research or funding behind this medicine and it's really cheap to obtain. I read lots of articles, joined a facebook group and heard A LOT of positive stories about it. So my neuro wrote me a script and I got some from a compounding pharmacy. I immediately started using the medicine. I didn't really notice muchat first with the medicine..... and then I did - within a few months I started feeling REAL. Happiness... HOPE. I hadn't felt like that for a very long time. I decided to leave my husband during this time as the relationship wasn't fruitful for either of us. This was one of the best decisions I've ever made ( aside from having my son and starting medication). 

I was even able to drive 2 hours away for my MEG scan. That was my AH HA moment. I hadn't been able to do that in a very long time. I even went out by myself to an ARCADE that had tons of flashing lights. I was so proud of myself. Something was changing. 

I had the scan done and within a few days my doctor called me in for the results. I had a rare form of Right Temporal Lobe Epilepsy. He suggested I start Lamotrigine (Which I had already researched for the depersonalization). It sounded like the best medicine for me all around. I started very low on the medicine - 1/2 of a 25mg a day. I did this for the longest time. That little dose along with my verapamil and LDN gave me my life back. Soon the visual stuff started going away. I didn't really notice anything anymore - not that I went looking for it - either way they just weren't there. I was able to travel to Savannah and Tennessee more than once. I could drive at night with zero issue. I was back. I was 100% from January 2017 to December 2021. 

This month, December 2021, I had a horrible migraine right before my period started. This migraine lasted days and brought back all of my symptoms. It left me racing for answers as to why. The panic set in and I immediately started getting the depersonalization and panic attacks. The anxiety was continuous, as well as the migraine. I feared the worst. I have a promising career, a wonderful boyfriend, home being built, son is in great health. I have the life I've always wanted and now these symptoms and the mysterious illness I left behind in 2016 is back. 

I went in to see my neuro and we discussed a plan. I realized I hadn't been consistent with my LDN for months. I kept running out and not refilling in time so I'd take less of the dose to make it last longer. I also had still been on a baby dose of lamotrigine. I have my LDN refilled and I am going to keep on it. I have already started the migraine diet again and I have increased the lamotrigine. I am just a few days into the increase and the anxiety is gone as well as the depersonalization. Everything else is still there, but not as bad. I think the main thing to note is back in 2016 my goal wasn't to get rid of the symptoms. I knew that wasn't possible. My goal was to find a way to live and enjoy life while having the symptoms. The symptoms going away was unexpected and quite a miracle. That is my only bit of hope. They had gone away for me once before so there is a HUGE chance that they will go away again... or decrease a bit. Either way I am holding on to my faith and trust that I will once again be able to enjoy life fully with or without these symptoms. I have such a wonderful supporting boyfriend - he is a God send. 

I will not be updating this blog anymore. My hope is to beat this again and one day write a book - I have way more to talk about than this illness. 

My advice to anyone reading this who is panicking and searching all over the internet for the worst outcomes is to STOP. Get off the message boards and Facebook groups. Do not identify as RARE and Untreatable. YOU are an individual and different from everyone else. Visual Snow is a cluster of symptoms. Just as headpain is a symptom of migraine or a headache. I know that taking my medicine and following a migraine diet will help with my migraine pain.... so can treating the other things that may be causing you Visual Snow that you aren't aware of. For me it's inflammation and epilepsy. I say this with 100% confidence. I decided to treat myself for inflammation and epilepsy. Remember though - I was starting to get better even before I started taking the lamotrigine. I was treating myself for inflammation first. I believe this brought down my trigger threshold. My brain was on fire. And the one thing I felt this past week was like my brain was on fire. 

Pray, hold on to faith - even if you don't believe, trust. I wouldn't be where I am today without faith and trust that anything is possible. Don't give up. When you feel the anxiety coming on tell yourself that you're going to fight - but you're also going to learn how to accept. Let go of the control. Let go of the what if's. Fake it until you make it and I promise you, you'll get there. 

If you're reading this, I'm praying for you. You will get through this! Please take care of yourself. <3

Update.... still getting no where

It's been a while since I last posted.... frankly there really isn't anything to update on. I am still facing the same issues and now my vision is even worse. I feel like I have been tossed around and forgotten by the medical field. I have seen more doctors than probably a household would in their lifetime. My last neurologist tried me on Lamotrigine and when I told him it was making my ears ring he told me it wasn't from the medication. However, when I stopped the Lamotrigine.... the ringing stopped too (went back to normal ringing for me).

I have a new Neurologist (actually one I visited in the beginning, but left because I didn't like his office staff). He still very much feels like this is all related to my thyroid condition Graves' disease and the high antibodies it is producing. I guess thyroid antibodies (and antibodies in general) can attack even more than just the organ (organs) they are attacking. I really don't know how to explain this so I will leave it at that.

My recent blood work has shown that my ALT is elevated and it was elevated earlier this year too, which my endocrinologist failed to mention. So I am showing signs of a fatty liver without being an alcoholic and without being over weight. It's like my damn body is just slowly shutting down and I can not do anything about it.

I am seriously thinking about going to Mayo clinic, but I have no idea what they will find... most likely nothing and it will all be just a waste of time.

My vision is getting so bad that watching any type of movement is bothering me. It's like my peripheral vision is getting hung up on my central vision. WHY THE HELL IS THERE NOTHING LIKE THIS IN MEDICAL LITERATURE????? I don't understand this. Why am I having to educate my doctors too and I don't have a fucking medical degree, It's really bringing me down. I am getting close to my quitting point and that scares me because I always said I would never give up.....

Things that I am trying to look into further-

Reducing my thyroid antibodies to see if that helps at all by -
Taking selenium to reduce antibodies or
Taking LDN (Low Dose Naltrxone) to reduce antibodies or
Removing my thyroid to reduce antibodies

Once antibodies are done I want to retest for Lyme as my neuro thinks my high thyroid antibodies are cross-reacting with the lyme tests.

Testing Anti  NAE antibodies to see if I have Hashimoto's Encephalopathy

Try other migraine preventatives to see if I get relief

I am also trying very hard to stay on an autoimmune diet to see if that helps me at all (I've failed miserably at this diet because I already stay away from so many other foods).

So this is where I am.... I never in million years thought this is where my life would be.... at a stand still. I really pray that one day I will post a happy ending on this page and be able to help others to not give up.

A day in the life of Visual Snow

This morning I woke up... I enjoyed the few seconds of silence before my brain decided to turn up the volume on my tinnitus. My tinnitus sounds very similar to that of a far away tea kettle screaming on a hot stove begging to be taken off. My first thought is "It's still there!"

I blink my eyes several times to focus on getting into the bathroom. If it's too dark I have a hard time due to an off balanced sensation I often get.

I jump in the shower and try not to focus on the tiles in my shower which appear to be flashing when I move my head. This is very similar to a light being turned off and on very quickly. The tiles also shimmer and shake ever so slightly. 

After I get dressed I go into my sons room to wake him up for school. I make my way to his bed while navigating through a dimly lit room and a visual field full of static. This is very similar to an old analog television screen having bad reception. My eyes make brief contact with a sliver of light shining through my sons window. I am then left with an afterimage of that light (a vertical line appearing everywhere I look for several seconds). 

After my son is dressed I get into my car to drive him to school. I try and focus as hard as I can on one object as everything in my peripheral vision appears slightly choppy. It's basically like looking at a moving image behind an oscillating fan. The medical term for this symptom is conspicuous akinetopsia. You are more likely to get into a plane crash than getting that particular symptom. I can still drive and I can see all movement, however movement in my peripheral vision is not as fluid as movement in my central vision. The anxiety that this causes swells up inside of me. Some days I fight back tears while my son is in the car because it terrifies me to think about my future. I sometimes glance at people in the cars next to me. Some with smiles on their faces enjoying life. Others upset over traffic as if it were the worst part of their day. I immediately become angry and jealous over my situation. I try my best to overcome this by positive thinking, but it's hard. I have had this condition for over 7 years and though we've located the areas of the brain that is causing these symptoms, we still have no treatment. In order to find a treatment, we need more medical studies. In order to get these medical studies done, we need funding. 

I have been on the other side of this illness. I have been the person smiling in the car enjoying life and I have been the person screaming at others in traffic. I never thought about donating to any cause because it didn't pertain to me. Infact I just didn't really care because I had too much going on in my own life. I understand this thinking. But we need to change this type of thinking. There are so many people out there struggling with different conditions and they need help as well. 

Please consider donating to help continue studies on Visual Snow so that one day I might be able to see normally and enjoy my life once again as well as countless others.

www.eyeonvision.org

www.gofundme.com/visual-snow

So confused

I usually don't get this down in the dumps anymore.... I mean sometimes I do, but usually my husband is here to console me or I just kind of suck it up and move on. My husband isn't here at the moment and I am just as blue as one can be. In light of the recent tinnitus stuff and me tapering off the lamotrigine I just don't know what to do anymore. Part of me says to give it another go and just see if the tinnitus happens again and if so then discontinue it and move on. BUT.... I am just facing the reality of this disorder.... there is NO cure! If I get even a little bit better with a certain medicine it's by chance. I am just feeling really down about my future. I can't look ahead to anything because I don't know where I will be then in terms of progression of this illness. Part of me feels like I would be better off not being here... I know that isn't rational and I would never hurt myself... it's just my broken brain. I can't help but look around me at all of the horrible people in this world who have no issues and here I am trying my hardest to function and wouldn't hurt a fly.... I just don't get it.


The brain is still a mysterious organ for us.... I just pray that soon there is an answer for me and a treatment....

Discontinuing Lamotrigine

So about 3 weeks ago I started the lamotrigine. I had a lot of anxiety over it due to the rash it can give you, Steven Johnson. The first few days I experienced itching and tiredness. Then around the fourth day, a few hours after taking the morning dose of 12.5mg (25mg split in 1/2) I would get an increase in energy. This lasted for the first two weeks. During the three weeks on it I noticed my mild tinnitus was getting louder. Last week I woke up in the middle of the night to my ear screaming. I immediately had a reaction of anxiety and once I calmed down I was able to fall back asleep. The loud tinnitus lasted for about three days and then seemed to calm down to a less noticeable ringing (louder than my normal though). I wasn't too sure what caused the initial ringing so I just passed it off as an isolated incident. Then last night the same thing happened. I woke up around 4am to my right ear screaming so loud. Again the anxiety hit, but I talked myself out of it. I did pull up Doctor Google and found that it's a common side effect of the Lamotrigine for some and for some it remains permanent even after discontinuing the medication. I did see my doctor two days ago, but failed to mention the tinnitus even though it had happened a week earlier. I did tell him about the itching and he reassured me that I would not experience any side effects on such a low dose and that it was just anxiety. I cried in my car that day because he made me feel so stupid. Any suggestion I made about possible treatments were turned down. Anyways, he told me to increase the med which I was going to do yesterday. I am glad I didn't, because that was the night of the 2nd tinnitus episode.

 I always feel worse at night and my only guess is because the drug's plasma concentrations are thinning and my body wants more medicine. I know that sounds crazy, but I am VERY sensitive to MOST medicines. Usually migraine patients are and it isn't just an excuse. The faster the medical community listens to their patients saying this - the easier patient-doctor communication and trust will be. Doctors like to put you on a medication that they have faith in because they have seen it work. Vestibular Migraine patients however (usually on their 5th+ medication trial) are scared about side effects.. usually worsening of their symptoms. Doctors become frustrated because we want to take it as slow as possible. I was told my appointment was a waste because I was still taking such a low dose. To me it wasn't a waste because I was going there for reassurance. It became a waste once he said that to me though. It appeared that my last appointment was a waste as well and so were the 2 months that I went without seeing him in between visits because I could have spent that time searching for a more understanding and compassionate doctor.

So here I sit with a little less than 12.5 mg of lamotrigine wearing off in my system and a high pitched- low-level hissing in my right ear. Every once in a while a movement will throw me off balance, but I recalibrate myself. I begin to feel sorry for myself as well, but I try to think positive. It's hard to make plans with anyone because I have no idea what tomorrow brings for me. If I wake up dizzy in the middle of the night, that usually indicated that I will be extremely off balanced in the morning which ruins my day. I hear stories of some people moving on with life and just living with the dizziness. I can't.... I absolutely can not! I am determined to figure out what the hell is going on with me and fix it!! I refuse to take this lightly. There is no reason why I would wake up one morning and my world be changed. Something happened and it has a solution. I just need to find a doctor who is willing to work with me. A doctor who is patient and trusts me so that I can trust him/her. If he/she is out there... I will find them....

Been a while

It has been quite some time since I last posted. The 2nd phase of the Visual Snow study has commenced in Munich, Germany. We are currently awaiting those results. Professor Goadsby is in the process of starting up the 3rd phase of the Visual Snow study at Kings College Hospital in London. We are currently raising funds to hire a full time researcher www.gofundme.com/visual-snow.

Update on me-

I am still dealing with daily visual snow symptoms, but on top of that I am dealing with vestibular issues. I was first diagnosed with bilateral vestibulopathy and then later diagnoses with Vestibular Migraines. At the time of testing when I was diagnosed with vestibular migraine I had ZERO weakness in either ear. I was told that I most certainly have no issues physically with my inner ears, but that it's the migraines which causes the dizziness. That diagnosis was music to my ear, but it still leaves me questioning the diagnosis's. What if my most recent diagnosis was wrong? I should just let it go, but it's tough. I wouldn't be able to do anything anyways. The migraine variant is the best outcome because I can continue on with the treatment I am on now, Verapamil and Lamotrigine, to see if it helps with the dizziness and vision issues. It still seems like everything is way worse right before my period and my OBGYN has said my hormones are all within range. I just don't understand it all. I have the chance to go to Louisiana to see a doctor who specializes in diagnosing vestibular disorders. The only problem is he doesn't work with any insurance companies and wants $4,000.00 for testing and then I would have to submit a claim to my insurance company.... who could then deny it. I should just be happy with my diagnosis and leave it at that....., but my mind doesn't work that way. If my medicines would start working that would prove that it's a migraine variant.

Finding the silver lining

MUSIC - I wrote a very long detailed post about finding the silver lining in life with an illness. I decided to erase it. My silver lining isn't going to be YOUR silver lining so there is no point in me rambling on about my love for Music, but I will tell you that it has re-awoken something inside of me that I haven't felt in years. Music has the ability to bring back memories so much that you can mentally relive them and physically sense them. In alzheimers patients there have been some fascinating results with playing music through a set of headphones and it bringing back the patients for minutes to hours at a time. I use music to bring me back. Music is helping me find the silver lining in my walk with this illness.

WRITING - What you are thinking everyday.... the pain you feel, the silent war that is going on in your head.... let it out. Write it down or type it out. Keep it to yourself or post it on a blog for all of the world to see... just don't leave it caged up confined to a secret folder buried in your frontal lobe... it's not doing any good there. And who gives a shit what you say? Either someone will read it and like it, or they'll hate it... but at least it's out.

FRIENDS - I've lost most of my friends after this illness happened. They couldn't understand why I wasn't able to party with them anymore. Why I couldn't do the long distance trips for a night out. Some I lost because I was married and had a child and others I lost because they knew I changed. I was very young when this hit. I instantly became twice my age.... The good thing is I've gained quite a few friends along the way. Real friends. Genuine friends. These are people who understand what I am going through and still want to talk to me. People who know all about my dirty laundry and frontal lobe secrets and they still call me.

Finding the silver lining in your illness isn't always easy. Most of us are consumed with the 'what if's' and I totally get that. I am the first to raise her hand and admit that I am afraid of EVERYTHING since getting this stuff. My life consists of barriers that I have placed around myself. What I am protecting myself from, I have no idea, but I am learning that if you are scared of something then it means you need to do it in order to set yourself free. So... i'm finding the silver lining in my illness.... and you can too.

New update

It's been a while since I last wrote.... and I am sorry to report that it isn't because I have found a magic pill that has taken away all of my difficult symptoms.... No, it is merely out of the lack of motivation to pick up my laptop and tap on the keys. It seems I have been in an endless funk for the past month. Hell, for the past few years really. I am feeling stuck actually. I feel as if I'm stuck at a theater watching an awful movie that I can't walk out on. One that you had your hopes up that would really be great, but instead you're regretting paying the $20 to get in to see the crap fest. Yup, that's where I am. Pull up a seat and I will tell you the story line:

 Late last month I went to see a Dr. over an hour a way who specializes in dizzy conditions - Mainly inner ear problems. His office was full of special equipment and fun machines that spun you round and round until you were seriously dizzy. When I first sat in this particular fun chair the doctor read over my history and made some comments about my illness prior to getting dizzy in 2006 and the birth control I took one day prior to the actual episode happening. Then the prozac and feeling better in between until I stopped it, restarted after having my son and getting trampled on by migraines, visual symptoms (VS) and then 4 years later getting dizzy again. He told me from the get-go that it sounds like migraines to him and not an inner ear thing, but that he would test me with the best testing equipment they have available on the market "The stuff they test astronauts with before they send them into space!" (His words).

 The doctor left the room and his assistant actually did all of the work. He strapped me into the chair and put these goggles on my head. He has me following a moving dot on a screen and then put something on the goggles to make it go completely dark. He told me the chair was going to start spinning for a little while and that I would get dizzy and once it stopped I would feel like I was going in the other direction. Wow, that was awful!!! I have to say though, as bad as that was, it wasn't near as bad as the caloric testing with air going into your ear. Yes, both make you terribly dizzy, but I felt more secure being strapped into a chair in an upright sitting position. After that test was done, the assistant had me do some other things that required the goggles, then without the goggles and standing. I waited while he was doing some paperwork before we went on to another test in another room. Before we got up to go to the other room he looked at me and said "I can tell you now, you have nothing wrong with your ears. They are functioning quite well. Higher than well." That was a relief. But still confusing as to why the first ENT told me I had bilateral vestibulopathy.

 So, in the next room they did some test that looks for brainstem issues. After this they did a hearing test. I learned that my right ear canal is shaped differently than my left lol. It was harder for him to get the equipment in my ear. None the less he succeeded and I did really well on that test too.

 Lastly, I was taken into another room where the doctor came back in. He told me they were going to do one last test which was super advanced. They put on a different pair of goggled, more like glasses with little cameras on them. I was instructed to stare at one spot on the wall and that the assistant was going to push my head around, but to keep my eyes on the spot on the wall. Needless to say, that test was good. The doctor said I was well above the average for my inner ear testing and said there is nothing wrong my ears, just as the assistant had mentioned earlier. He told me it is a classic case of migraines and that it has a hormonal component to it and that I should speak to my ob/gyn about it. (Funny enough I had seen her the day before and was asking her about it).

 So, I left his office feeling like I was on top of the world. For two years I lived in fear under a diagnoses that is, to me and most, a life sentence. With Bilateral Vestibulopathy you will always have damaged ears, you just have to help your brain rewire itself to regain balance. You usually will never regain 100% of your balance. So yes, getting a new diagnosis made me feel on top of the world. I felt like I was going to get a second chance at this life. A chance to really be a mom and a wife without these dreaded migraines and all of the dizziness......

 I returned to my ob/gyn, with my husband =), and she went over some blood work she had me do. She told me all of my blood work looked normal and it has no indication that it's my hormones that are the issues. My husband stuck up for me and told her what he has witnessed with me getting dizzy the same day I start my period, or certain times during the month. She had no answers. Then I asked her "What if I have just become SENSITIVE to my hormones... even though they are normal?" That was the million dollar question. Of course there is no straight answer... in fact she really didn't have an answer except that it may be possible. She was really hesitant to even mention what she did which was to take a medication that they normally give women with endometriosis to completely stop a woman's cycle to see if it helps with migraines. She said it would immediately put me into a temporary menopause and that is the side effect profile... menopause symptoms - hot flashes, night sweats, dizziness.... hmmmm sounds like me already, both myself and my husband said this at the same time. Any ways, I was told to think on it and if I decide to do it, let her know. I declined on the birth control option as I feel that screwed me up in 2006 and I really don't want to go through that again.

 So here's the thing... You can equip yourself with all of the ammo in the world, but if you stand in the middle of the war and you don't use any of it, you won't last too long, right? So since late last month I have been doing exactly that. I stayed on my small dose of Verapamil just praying for something to change. How can I expect anything to change if I didn't change it? I've been literally living day to day, not looking forward to any of it. I've been sitting in that lonely seat in my very own theater watching my very own movie play before my eyes all the while not changing a thing.

Several days ago I came across a website called Mvertigo.org - it's a website for Migraine Associated Vertigo patients. I didn't quite fit that diagnosis in a sense that I don't get true spinning vertigo. The term MAV has been used loosely when it comes to migraine so I won't use the term MAV, but I will say Vestibular Migraine fits me very well. In fact every single symptom fits me, down to the visual snow as it seems quite a few have too. Some of the pieces started coming together for me. I started thinking back to 2006 right before all of this happened and could see signs of the symptoms of migraines, like the light sensitivity, fluorescent light issues, vision issues, rubber band feeling all after a very stressful few months. The Prozac made it better (which a lot of SSRI's can help with migraines). The issues presenting again after I went off of the medicine, got worse after starting them again and switching meds which presented with the actual painful migraines and visual snow. As the time goes on it keeps getting worse. The best I have ever felt was when I was on 120mg of the Verapamil. For the past few months I had taken myself down to 40mg a day.... yup, that is an infant dose. No wonder I have been getting horrible migraines daily and awful dizziness. I am motion sensitive, sound sensitive, light sensitive, etc. My brain's threshold is none existent at the moment. So, for the past few days I have increased the dose by 1/2 a mg and will work my way up to an additional 40mg a day. Eventually I want to get back up to the 120mg a day, but I have to do this slowly because I have such low blood pressure. I know some doctors day the verapamil typically doesn't lower already low blood pressure, which makes no sense to me since that is the idea behind the medicine. It did actually lower mine, but fortunately I had no symptoms from it.

So why am I depressed? I'm not sure... Maybe because it's already Christmas. It's another year passing and I am still in the same place I was years ago. Desperate for a cure.... in pain... suffering... not enjoying life. The symptoms torture me some days and make it hard to ignore. Ive been debating on trying another medication, or adding another medication. The thing is... there are no doctors around me who know anything about Vestibular migraine. It's so rare, I would almost have to travel out of state to find someone.

 So this is where I am now. Hopefully by this time next month I will be somewhat improved... at least maybe a break or two with my migraines?

I am Visual Snow

 I love smelling the inside pages of a brand new book. You just can't beat the feeling that follows from a good inhale of fragrant pages. The rush of endorphins that flood your brain.....
How ironic it is that I love books so much, but can no longer read them due to my vision. It's rather tragic really. A good book used to consume my brain for hours. It was a great escape from my mundane pre-VS days. Now that time has been replaced with less enjoyable things such as worry. Unanswered questions. Pointless doctor visits. Phobias. Diet modifications. This is who I've now become. Who Visual Snow has turned me in to.

 Some days I feel like a puppet. Either someone has a very gentle hand up my ass or there are invisible strings attached to my every limb. Most days I just go through the motions all while holding on to some piece of hope that one day I will be myself again. Other days that hope is replaced with fear and anger. Fear of the unknown and angry that this is happening to me. I shouldn't be going through this.....

 What I don't understand is why this condition separates you from so many people you were once so close to, and brings you closer to people you hardly know... all because they can relate.. It's so wrong, but feels so good. What do you do? I'm tired of feeling so bad and restrained from life that a taste of something that makes me feel so good is like eating the forbidden fruit.... and we all know how that one played out.

 It's so simple to think of the things you wish you had and hadn't done before VS. Or the things you'd rather be doing if you didn't have a condition that completely warps your vision. But truth is, it still leads you back to the reality.... that while Visual Snow doesn't really define me, it technically does. Because I'm still the girl who loves to smell the pages of a new book, but can't read it. I'm still a puppet merely existing and not really living. I am still limited to my abilities... or as some would say disabilities..

At the end of the day I will still go to bed with Visual Snow and wake up with Visual Snow. I have a condition.... I own a condition... I am a condition... I am Visual Snow.

When enough is enough

Lately I've been questioning a lot about life. I wasn't raised religious at all- and while my family attempted to get us into church and all that good stuff, it never really set. So as a child growing up I had a lot of unanswered questions, like "What happens after we die?", "Why are we here?", Who is God and Jesus?" These were tough questions for a young child and so having them unanswered all while I watched my seemingly normal childhood crumble before my adolescent eyes.... I began to break. I lost my sister when I was 8, my bestfriend/ex boyfriend at 17 and then my mother at 27, Only to get this rare condition thrust upon me out of the blue. I was an angry girl and yet I still chose to go to church and seek God in the midst of all of these trials. One thing you are taught as a Christian is that suicide is a huge no-no. While my non denominational church may argue that, most Christians on the other hand still believe it is a one way ticket to hell if you commit suicide. That has been the only thing really holding me back from taking this option through the worst of this condition. However, lately... I've been struggling with my faith. I could give you a hundred reasons why I should believe in God... I mean just having a rare condition and actually having doctors studying the condition, to me, is a sign of answered prayers from God. But then my mind asks why would such an Almighty and Powerful Being allow a new mother to suffer. Why would she allow such a gap between herself and her baby and herself and her husband and herself and the world? Why would he allow such a rare condition to get worse each passing day and not only that, but to allow the rare symptoms to be even more rare with other not so common and debilitating symptoms in the VS realm.... When you start losing your faith, you stop finding reasons why you should be here suffering.

I used to enjoy life... a simple drive to the country with my windows rolled down and my radio playing, what some may call, 'noise', was my release. That was my refueling of life. I got pleasure from the simple things in life when it came to me and the outdoors. I loved traveling and going to new places. I would literally burn with excitement when anyone mentioned a road trip, be it 15 minutes down the road, or hours away. I always knew my calling was away from home. I was supposed to pack my bag and sporadically jump in my car and travel. Money was no option, of course it was, but Hey, it was my calling.

Now I retch at the thought of driving anywhere too far away. My vision has become so choppy that I would almost rather close my eyes and force my other senses to take over than allow myself the misery of watching life pace me back in fast moving fragments.

I went to lunch with some friends yesterday and I am forced to hear it over and over again about how normal I look.... beautiful they said. I'm beautiful..... I hear it all the time... yet it means nothing to me. I am hollow inside.... broken. I am nothing without my vision. I am missing inspiration. I am missing faith. I am missing......

It's hard feeling alone in this condition... it's very tough. You find yourself wanting to get closer to those who are going through it too, just so you don't feel so abnormal. Truth is we are all different, no matter how similar. We may have visual snow in common, but one may still be an @sshole LOL. That part doesn't change. My husband.... I don't know what to think about him anymore. You want to find the best in your life partner. We got married before this happened to me so I was unaware of how he would handle a situation like this. Hell, most couples would fear a lighter load than this and sometimes that's enough to break a marriage. This is HELL. There is no other way to say it. Hell on earth. He chooses to grade me on my exterior just as everyone else. And so if I look fine.... or beautiful... I must be having a great day with no issues. Truth is no... I do not have great days and every day is an issue. This bothers me.... sometimes I just feel like I have no support in this. I can't handle normal life and see him come home from his 'normal' job complaining about something so mundane and stupid. "Oh you're in a bad mood because traffic was slow on your way home?" How about I can't even FUC%ING DRIVE!!!! It takes everything not to lose it.........

Every morning I wake up and I've had enough. I tell myself "This is it, I'm not dealing with this anymore. Fuc% it!........... But then I hear my son and I am reminded of my responsibility. I began to think of what his life would be like without his mother who he loves so much and depends on. I don't want to hurt him, my husband or my family. I know that in this moment, and however long this 'trial' will last, it's going to hurt. I'm going to have days where I don't want to suffer anymore. There will be days where I am just supposed to put a smile on my face and pretend that everything is okay since I am only seen on the outside and my swirling mess cannot be seen on the inside. One day it's going to get better and I know, Lord knows, I will be a stronger person because of this. I owe it to myself to try whatever I can to be happy. To live this way until I don't have to anymore. And so I wait... I'm home now where my vision seems moderately normal to me, but I know that tomorrow when I step out into the ever revolving world I will once again have enough... and once again be reminded of my responsibilities......

Update on Visual Snow Study, my current state of symptoms and more

Word is that the Visual Snow study will begin next month in June. I am not sure of anything else other than it will be in the UK. I have applied and I hope I am chosen for it, well at least a part of me hopes so, but a huge part of me isn't so sure. My peripheral vision stuff.... you know, they annoying and scary choppy vision is way worse now. It seems like it's closing in more and more into my vision and I am so scared that it will consume my central vision as well. At the moment driving is a complete nightmare. I have refrained from traveling to distant states to be in family weddings and other events just because of this symptom. It makes my life absolutely miserable and frankly brings my mind questioning suicide more than I have ever in my life. **I will add the clause here that I will NEVER commit suicide- I am simply just stating the truth of how I have felt with this symptom**

I hear people complaining about Visual Snow symptoms all day long.... all of these symptoms which I've had for 6 years now and they are a walk in the park compared to this choppy vision symptom. It seems to be sooooo freaking rare in medical literature, and slightly less rare in the visual snow community. I've come across a dozen or so visual snow people who have it as well. It seems even for those who have it super bad, they don't talk about it much and have gone on with life. That gives me some hope, but it doesn't take away the fear I experience when I am even think about driving. I have tried to explain this symptom to others and the best way to explain it would be to imagine yourself looking through an oscillating fan... seeing only fragments of moving objects. The objects appear to strobe in and out while in motion, missing frames making the motion unsmooth and choppy. Imagine blinking your eyes non stop while driving.... this is what my peripheral vision looks like. It's an absolute nightmare.

I can't help but feel sorry for myself.... I think of everyone who is able to drive and get around just fine and do mundane things that they take for granted.... I would kill to have this one symptom go away.

I am so frustrated with meeting doctors who have no idea what I am talking about and who have never even heard of the condition. I hate being my own doctor!!!

I just want to find a doctor who has heard of the condition, or met someone who has this condition - even though mine is VS related, I still have abnormal brain function - I just want to be able to talk to the doctor and them not look at me like I'm crazy.... For the love of GOD, I'm a freaking human being in DISTRESS!! Don't tell me I need to just get on with life.... why don't you slam your freaking head in a car door and YOU get on with life! (Sorry.... I'm frustrated.... I mean.... I really am)

I also feel like a phony when I walk around.... I feel like everyone looks at me just the same as they do everyone else, but I am different and they have no idea. I want to tell everyone so they can chill out when they ask me to do something and get a response they don't want to hear. Believe me, I would love more than anything to hop in my car right now and just drive.... to anywhere..... I miss it so much. I'm stuck.... I feel like my soul is trying to burst out of this zombie body of mine to get on with life, but this miserable sack of skin and bones has is tethered down so well.

I have very few things of hope that I am holding on to for getting better. One of those things in the idea that my symptoms may all be autoimmune related. The one disorder I had before all of this started was Graves disease and my antibodies were and still are through the roof. I have also spoken to plenty of other VSer's who have thyroid conditions. The 2nd thing is Lyme disease.... there is so much controversy out there and I did have a positive test, even though my ID dr says Igenex is 'shaky". I just plan to keep treating it naturally to see what happens. The other thing is the Visual Snow study. Since it's starting soon, I am hoping the researchers really find a way to calm down all of this hypermetabolic stuff and speed up the hypometabolic stuff as well. It just sucks either way you look at it... the odds are against me. But I will take what little hope I have an continue to hang on because I just can't process why a small town girl like myself would have such a rare rare RARE disorder with an even rare set of symptoms to match.

I've had enough!!!! So now what?

A person can only take so much... I often jokingly tell my husband that if I was an animal I would have already been put down. I laugh, but I am serious. The bad part about being a human and having a problem is you know you have a problem and you know there isn't a treatment. The good thing about an animal is that they may know they have a problem, but they are quick to adjust and not stress about it day in and day out.

 My corgi mix Tito has lost the use of his back legs entirely. The muscle has completely deteriorated and he drags his self around everywhere. He gets happy and excited and sometimes wants to play and he does so by dragging himself or hopping around. It's as if nothing were wrong with him.

I, however, can't seem to get myself out of this pity-party funk that I've been in since September of 2013. I came pretty close, but for some reason having a rare disorder wasn't enough for my body to take on, it now wants to be dizzy for 10% of my day and leave me in a state of fear that it's going to get worse. This has been going on since October 2014. The doctors seem to think it's BPPV, but I am not sure anymore. I am just so tired. I am physically and mentally tired. I don't believe in suicide.. it is not an option to me and I've pushed that out of my head completely. I am not in a depressed state or an anxious state... I do not need medication to make me feel happy.... I am happy. I am happy that I am alive and have a wonderful husband and son. I have a good life from an exterior view point, but on the inside I am at war with myself.

So I've had enough...., but what does that mean for myself.... what do I do now? In my heart I long to travel.... I want it so bad I can taste it. It's like a magnet drawing me closer and closer, but I am stuck. Do I sit around waiting to get better. Do I stay perched on my couch biting my nails worried that I am going to get dizzy again or stress about how I don't see movement properly and am so different from every body I know. Do I face the fact that this is now me and just set it aside and start living my life with the messed up vision and dizziness and just pray that somewhere along the way the researchers find a treatment or I miraculously get better on my own? I want so badly to do the latter, but I just don't know. How does an animal do this? Tito obviously doesn't think his life is over. He's still just as happy as ever. When he's in his dog wheel chair he wags his tail and rolls around everywhere. It's his Band-Aid. I need a Band-Aid so desperately. If I just felt for one second that I had someone on my side who wanted to try and help me get better.... well that would be a Band-Aid... unfortunately I don't have this. My doctors still have yet to look into the condition. I am but a number in a long line of patients. I feel so separated from the world, so different. I long to fit in and be normal... I don't want to stand out or be different.....But I am ..... that is me and I've had enough! So now what?

It's been a while

It's been quite some time since I've updated this blog. I would like to posting that I experienced a true miracle and all of my symptoms disappeared, but unfortunately that isn't the case.

I started experiencing a sudden onset of a new type of dizziness (not the typical driving kind) in October 2014. The dizziness would come and go for no apparent reason. I noticed it more at night after a shower. I have been trying to trace it down to what may be causing it, but I can't figure it out. I thought maybe hormonal because they seem worse around the time of my period which is usually when the migraines start flaring up as well, but then it started to be constant. I have noticed that my eyes actually move or throb along with  my pulse (heart beat) causing a slight nystagmus. I notice this more while laying on my side in bed. The doctor thinks this could be something vascular and is sending me to a new neurologist (since my insurance has changed and my last neuro was no help).
I also notice the pulsating actually makes my head move as well. Some days the dizziness happens hen I am still or after being in the car.... it's just strange and I can't figure it out.

I am torn between - is this from my migraines, my neck issues or something like BPPV. I haven't experienced true spinning vertigo since 2006 and I don't even know if someone with Bilateral Vestibulopathy can experience true vertigo... so maybe it's the crystals in my ears and they are out of whack. I don't know! Either way, this whole dizziness stuff.... I am done with it.

I woke up this morning to my 5 year old whispering something to me from the other side of the bed. I turned over to look at him and have been off all morning. Usually I feel dizzy more toward the evening, so I m usually able to get him off to school without the dizziness, only dealing with the normal visual crap... so this has been a rough morning for me.

My doctor set me up to see another vestibular rehab specialist, this time it's a different one. I am not sure what to expect because the office looks like a hole in the wall, where as my last neurotologists office was state of the art, but the doctor really didn't use any of his nifty tools to help me. He was just pompous! Anyways, my appointment was set for Friday, but I called them first thing this morning to let them know I am in a bad state today and they were able to fill a cancellation spot for me, so I see them at 5pm today. I am grateful this place is literally down the road from me because I wouldn't be able to make it.

I don't know what to do anymore. I am on the verapamil which is for the migraines and most doctors use it for dizziness as well.... Why it wouldn't help me, I have no idea. I can't really increase the medication because my normal blood pressure is already low at 90/60. I wish I could visit a top specialty place in Chicago, but there is no way I can get on a plane or stand being in a car for that drive! I just feel stuck! I should be working a full time job like most people my age. I should be able to take long trips to MI to see my relatives get married or attend family gatherings. This is what my life has slowly evolved into and I have no idea why. Why do most people with Visual Snow seem to have it fairly easy with no real progression in symptoms and they are able to get on with life despite the visual stuff? What is so different about me? I wish there was something they could hook me up to and tell me exactly what is happening and how to fix it.... is there such a thing?? I am tired of hearing "I am sorry you are feeling so bad", "Let me know if I can help"... I just want to be better!!!! I want out of this hell that is my reality...... I just want out.....

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?......

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!

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?....

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:

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!".......

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.

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.....