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.....