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?
Wednesday, December 23, 2015
Tuesday, August 18, 2015
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.
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.
Sunday, June 21, 2015
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......
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......
Tuesday, May 12, 2015
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 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.
Sunday, March 22, 2015
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?
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?
Monday, March 2, 2015
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.....
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.....
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