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.