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?....