I will not feel sorry for myself anymore!

Today my best friend, who oddly enough has visual snow too, messaged me about how she got in some travel brochures for visiting Patagonia, South America. She said I should go and she felt it would help me get over my fear of flying. My first thought is I would totally go "IF" I didn't have this new symptom of not being able to track fast cars. It would be my luck to go there and my vision get worse and I wouldn't be able to track anything. Now, logically if I sit back and observe this pattern of thinking I can see that this is a catastrophic way of thinking and by all means isn't rational. I mean, I have been close to the same for over a month with just a little worsening, but some days are better than others, so chances are going somewhere isn't going to make me worse. Now on the other hand the stress from flying could make my symptoms worse, so I refuse to go.... now that is a better way of thinking. Some may say that is crazy and just go, but it isn't that simple. I have been telling myself for the past month that this is so awful to be going through, why me, what is the point of living... yada yada. Then I would end my night by reading scriptures from the bible. How can I change my life around to get closer to God and here I was doing the opposite of what I should. The church is always talking about serving and helping others and my first thought is always, "I would if I didn't have such and such problem." I should be putting myself in the shoes of those who are needy. Those who are blind and would kill to have my vision no matter how screwed up it is. There are children who lose their eyesight because of health conditions. BLIND!!! I am not BLIND! My perception is altered and skewed, but I am not blind. To have these thoughts that I would rather be blind to not have to see what I see if absurd. It's not rational thinking, it's catastrophic thinking. It's me thinking of the worse. I am still able to see my baby boys smiling face every day. I am still able to see my husband and family. Heck, I am still able to work (as much as I don't want to). I will not feel sorry for myself anymore. Yes I could worse, but most importantly I COULD get better. I was setting a limitation on myself not only with my abilities on what I can and can't do, but I was diagnosing myself as permanent and nothing is too permanent for God. I read the bible and see stories of healing and never put myself in the their shoes or ever thought that I could be healed too, but why not? Why couldn't I be healed just as they were. Jesus health the lame, blind, sick and DEAD! I am healed!! "He himself bore our sins" in his body on the cross, so that we might die to sins and live for righteousness;"by his wounds you have been healed." 1 Peter 2:24-25

Upcoming appointments and Alternative testing

So Wednesday is the day I see two very important Dr's. These Dr.'s are either going to leave me extremely frustrated and depressed or give me some great hope that i am not going crazy. It will most likely be the latter of the two since I usually eave frustrated and depressed. So why am I going back to them do you ask? Well because they are the best we have around here. I do have a back up plan, however. My next step will be to visit the university a few cities away. That is where I go for my migraine treatment. Last time the reasoning behind my newly acquired jiggly vision was from Optokinetic Nystagmus and visual vertigo. For one I do not have a nystagmus and for two I am not dizzy anymore. The pieces just do not add up. On another note I ordered 5 tests to be done (alternative tests that a lot of Allopathic Dr.'s will not test for: Hair Mineral Testing Stool testing for Candida and parasites Blood mineral analysis Female hormone testing via saliva Neuro-Adrenal testing via saliva I just completed the neuro adrenal testing and am sending it off to the lab today. I will do the stool test on Thursday and the hair sample testing on Friday, as well as the blood testing on Friday. My monthly cycle should start on Saturday so when I will start the hormone testing- so that will complete everything. I know my migraines are completely influenced around my cycle, so there is def. a hormonal component to this mystery. I am also waiting for some paper work to come in the mail so I can schedule an appointment to do Lyme testing. It's been frustrating as I have contacted this office for a few weeks now getting told information will be sent out and it never does. I know Lyme is very controversial, but don't leave a patient hanging!

Alone in a world full of healthy people

When you are born into this world you don't know much. Only instinctive things like breathing, squinting at bright lights :), etc. As you get older you learn things, you become attached to people and things. You are happy and sad, but never think twice about these emotions. You get sick and you know you will get better soon either on its own or with medicine. These are things you've learned and know. But what happens when you get sick and no one knows what to do. I can only explain it being like the first person diagnosed with AIDS (even though it may not be deadly). Dr.'s didn't know what to do. I imagine some didn't even care what to do because it was our of their scope of practice and wasn't in their book of ailments and treatments. I feel a bit like this every day. When I first got the visual snow and the Dr. and I approached the Dr. about it... she didn't want to listen to me. I asked her if she had heard of it before and she said yes, but in people who use drugs. "Well Dr. you did prescribe me a legal drug- Zoloft." Not getting any help for my Dr. I resorted to searching the internet. I came across a yuku forum with a dreadful dark brown background that screamed horror. When I posted my symptoms I was immediately branded into the group. I wasn't told about the things this could be and to get checked for... I was just told "Yes, you have it, sucks to be you, but you are not alone." I DID NOT WANT TO HEAR THAT!!! First of all I am a woman... I am not a man. I have emotions and need to be soothed when I am scared. I know this wasn't their job, but it would have been easier. Anyways - So I had visual snow. I started on my quest for finding out answers, all the while telling myself I couldn't live with it. I had a new born baby and I wasn't functioning. I didn't feel attached to him nor anyone else. My family seemed so foreign to me. Here I am almost 4 years later and I did indeed learn to deal with it. I even accepted it as my new normal. I am not as disconnected to the world as I was back then. However, something is changing. After being diagnosed with the Bilateral Vestibulopathy and doing the VRT exercises and then ending up with the weird vision - I have learned yet again from the visual snow board that I am getting worse. It seems others have my symptoms- I am not to the degree they are too (yet), but will be in a year or two. I constantly am aware of my vision now and am ALWAYS second guessing what I see. I keep telling myself if this gets worse I do not want to live with it. Then I think about my baby boy who is turning 4 this year and how I want to be with him. I pray constantly even though I feel like no one is listening. I hear that God can move mountains, but I feel like my mountain is just too big. I still have the longing and hope that I will be free one day of this disorder and everything that goes along with it. That my little boy will know this life with the person who I truly am, not an empty shell of who I used to be. A month or more ago I started feeling really good about life and just as fast as that happened is when things started getting bad again. Last night my dad came over with his "new" family and I felt so out of place. I kept getting these waves of feeling unreal and that is awful... I don't even want to feel that way again. The bible talks about healing and how people should lay their hands on the ill person and pray for them. I want that so bad. I mentioned it to my husband and he didn't offer to do it. I guess it's too traditional for him? I can't help but shutter in the realization that he doesn't feel the same way I do. If it were him or my little boy who were sick I would be praying over them and for them constantly. I would be doing everything I could for them. What makes me so different? God help me.... I just want my old life back. In the meantime - the study I participated in will be releasing results of that study I was in later this month on the 25th. I was scared for so long because I had been content with my illness and I was scared it would show damage and bring me back out of the contentedness and bring with it fear. However, now I am praying they have found something tangible and that they know what they want to do to treat it. I pray it works! "He himself bore our sins" in his body on the cross, so that we might die to sins and live for righteousness; "by his wounds you have been healed." 1 Peter 2:24-25 HE died on the cross for our sins and by HIS wounds WE HAVE been healed.

New Symptoms

So after my last visit with the vestibular therapist and her saying my ears are close to functioning as normal and I can go about my life doing the exercises as needed, which means at least once a day or so. My curious brain wanted to see if watching traffic drive by would induce some kind of fuzzy feeling. Well... if you go looking for something, you will find it. Though it wasn't what I had expected. When I did this everything all of a sudden started looking robotic and fast. The cars would whip by and they would stutter in my vision. Not in frames, per se, but more like if you looked at a movie put in fast forward it would appear to jerk a little... that is what happened. It freaked me out and i got over it. A couple of weeks later on our way to Miami I noticed it on the interstate. Any car going in the opposite direction looked like it was jerking. It seems like the tires have been put in glue or something. Well lets say it pretty much ruined my whole Miami trip. When I got home I researched the crap out of it only finding topics on Frame vision. This scared me even more. I have since found out that there are a few people with visual snow who have it. I do not know the circumstances under which they acquired VS, but it seems to be very rare anyways. I had labeled myself that I would end up seeing in frames as some of these people report it happening very slowly and only noticing it in cars like me. I beat myself up for days and days and days neglecting my family because of the what if's... I found myself back at square one like when I first got Visual Snow. I am a Christian. I need to have faith. That is the only thing, aside from my husband and a couple of friends, has been able to pull me out of the funk and not label myself just yet. Every person is different and every symptom is different no matter what the disorder. I have bilateral hypo function and therefor my eyes and ears are tied together and if I am no longer dizzy than my brain is compensating, which means my eyes may be too. My migraines have started coming back and I know that can tie into everything as well. So for now I am giving it to God along with daily prayer that whatever is going on with me now will not progress down the road and will eventually go away. On another note - The study results for Visual snow will be released on October 29th 2013. There are a lot of people waiting to see what the study revealed is going on in our crazy brains. Praying that it will lead us to a cure so we can all see normally again and most importantly feel normal again :) God bless you all!

Food Allergies

A couple of weeks back when I was getting willingly poked 50 times in my arm to determine my indoor and out door allergies I also did a quick blood draw to check for common food allergies. I had to wait a week for the results, but finally got the news yesterday. The conversation went something like this...."Well, you have a LOT of food allergies!!" Me; "WHAHUH????" "Yea, two of the worst are Milk and Eggs" ::Takes the gluten free egg product out of my mouth:: (J/K). But I had almost finished a bag of gluten free cookies that contained both of those products just 40 minutes earlier haha. I made my appointment for Monday this coming week.... I don't know what I should eat at this point. I am praying she doesn't say peanuts are out... I love peanut butter and need it like oxygen!!!! Ya know... just having a day where I can wake up without feeling like there is a brick sitting on my forehead would be wonderful! If I could breathe out of both my nostrils at the same time... that may just qualify for a happy day in my book. Onward and upward!

Updated VNG test results as well as allergy testing

I went back for another VNG test (caloric testing where they blow warm and cold air into each ear to induce vertigo as a pair of electronic goggles that you are wearing records your eye movements). I hated the test more than any of the tests they do there. I went for a follow up the very next day and was surprised to hear that my left ear is almost back to normal and my right ear (the very bad one) still had some damage, but was looking a lot better. It seems the head shake exercises are working. That same week I had an appointment for the vestibular rehab and was mentioning how panning movement from tv, video screens at church, and sometimes moving cars can make me start to feel off balance. She told me to buy a disco ball with different colors, one that rotates around projecting the moving images on the wall and do my exercises with it going. So far so good. It actually mimics the same movement that makes me dizzy. this will help aide in training my brain. I am feeling beter and more confident that one day I will be able to drive without any more issues. We are going on vacation in October to the Keys. I usually have no problems as a passenger other than the feeling that we are going too fast. I make my husband stay at 70 mph and remind him every few minutes when he tries to go faster. :) On another note: The same day I did the caloric ear tests I had to do a slew of allergy testing, shots in the arm (about 50 for outside allergens) and a blood draw (for food allergens). I got the results instantly for the outside allergens, but had to come back the next day to see if I had any delayed reactions. I am allergic to 3 types of grass, 6 types of mold, some weeds, cats and dust mites. I had a very long reaction to the cats and most of all the dust mites. My arm is still red and raised in both of those areas and that was from early last week. I was told that allergies can cause migraines and dizziness and that I should get allergy shots to see if it helps. I am waiting to hear back regarding the food allergies and then I will start the shots. So, that is all I have for now. I had been trying to save up to see an osteopath so I could go through Igenex to get another Lymes test done. They say its hard to get a positive Elisa on the Lymes test and since I did, I should go through Igenex. It would explain the thyroid issues, migraines, dizziness, muscle twitching, etc. I would just love to get an answer. Any who, yea, I had been trying to save up, but it seems once I have the money, I have to spend it on some other bills. This has been life......

Bilateral Vestibular Hypofunction - Updates

Well, It's been a while. I didn't think anyone read my blog, but apparently others do because I've been contacted a few times. I know usually my posts on here are updates, just like this one. I have been dealing a lot better with my migraines - They now only come close to my period and during. I had taken verapamil for about a year and after stopping it I was down to just the few migraines a month. I started getting new symptoms however within a few months of stopping the med. The road ahead me, specifically on the interstate would appear to be bending downward. I also started feeling like I was sitting still, on one of those simulated ride where you are watching the screen move in front of you (like a roller coaster ride). Some call this depersonalization, but I know what DP is and this is not it. This is my brain getting confused with what my eyes are seeing, no doubt. I went to a neurotologist for testing and had a VNG study done. The Caloric testing (tubes in the ears and hot and then cold air blown into the canal) revealed Bilateral vestibular hypofunction. A "rare" (getting used to these diagnoses) condition that causes damage to both inner ears resulting in balance issues. This is usually caused from certain antibiotics ending in cin, like Azythromyacin, which I took a lot of in my lifetime due to ear infections and other illnesses. He said this was most likely causing the issues for me with driving. I also started noticing that when in coversation with people, certain head movements, primarilly up and down shaking in a "yes" head movement" I would get a quick zap of being offbalance. This too would be from the vestibular damage. Then there was also the case of while read something, say my computer screen, anything in my peripheral vision would start to shake a little, or bounce. This too is my vestibular system. Anywho, long story short I had been doing VERT, Vestibular Rehab since January 2013. I feel a little better, not a whole lot, still have the same symptoms to a degree. I did the VNG study again yesterday and got the results today. I have regained back most of my balance, with the exception of my right ear still being bad, but it has improved as well!!!! Great news!! I am going to keep up with the VRT exercises to see if some of these annoying symptoms will go away. I want to enjoy road trips agan :) On another note some other symptoms which seem to be migraine related have popped up. I do have visual snow, which I have talked about before on here... I am used to it now BTW, but this could be the contributing facot, maybe MAV which is vestibular migraine by the way (basilar migraine was my diagnosis). When I pass cross walks while driving (the ones with lines on them) the lines will appear to be moving to the right or the left. Also, cross walks made out of brick pavers will do the same. So anything with a type of pattern to it will move. Yippiee!!! I am also getting more sensitive to movement in my peripheral vision! I seem to be getting migraine symptoms without the pain too. I can always feel it in my eyes and neck. While at church viewing the big creen, once the camera starts panning left to right or if a pattern is flashing on the screen during the music playing, I will get izzy. My VRT specialist suggested getting one of those table top disco balls lights with all the different colors to see if exposing myself to this will help retrain as other therapists have suggested it to her. I am going to give it a shot :) Now there is teh case of support... I have zero support outside of my Dr's office appointments. I attribute this to years of complaining, many diagnosis' and not getting better. My husband listens, but not really. I feel as though I have to throw in the word boobs, to get his attention. You can hear the buzzing in his brain after he lets me unload on him. Quite sad. I guess somewhere in my imaginative brain I figured my husband was the best man in the world who would give me support every time I needed it. FAIL! Unless I am crying or dying... I get zero!!! All I wanted from him today was to ask me how my Dr's appointment went. He told me he was busy and couldn't talk. I told my support board, but sometimes I feel like most would be envious for hearing of others good news, because they want it to be them. I dunno... I guess that sounds crazy. I am such a nurturing type that I just don't understand how my own husband could sit back and let me go through all of this on my own. If it were him who had these issues I would be spending every bit of free time researching and contacting people. Now I know I am a very strong headed person... a Driver if you would call it that, and maybe he feels if anyone can do it it's me... but the truth is, at the end of the day I am just as human as him. I keep holding on to the dream and the vision that one day I will be back to normal. The old pain in the butt girl I was before all of this. The free spirited girl who had a dream to travel the world and see as much of it as she could. I can still feel it deep inside soul that this is going to happen. That is what keeps me going.