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!