Hello everyone, I dont know if you remember me posting in here but I did finally get in to see Dr. Carey at Johns Hopkins. I was diagnosed with Superior Canal Near Dehiscence and Vestibular Migraines. I knew I didnt just have migraines. He said that the reason I can hear my eyes blink, my neck creak, my hollow sound to my head, and buzzy sound when i talk are all due to the Superior Canal problems. He said that my dizziness he still feels is MAV related. We are going to up my medication to see if it helps. The medication has really helped me thus far in controlling: my headaches, sinus pain, jaw pain, tooth pain, nerve pain, ear pain and even ear fullness and pressure.
My point is, is you feel that your symptoms are not just MAV related please keep looking into your issue. A lot of disorder come with MAV such as: fistulas, SCD, Intracrainal Hypertension, Leaking of the brain flud, and Lyme Disease. I will say that one of my worst symptoms was that loud humming in my ear and it seems to be controlled with MAV medications. Dr. Carey agreed that he felt it was MAV related as it was not the typical SCD tinnitus (hearing your heart beat in your ear).
I feel much better just knowing what is wrong with me. I am not a candidate for surgery at this time but I am thankful that the meds are helping me control 60% of my symptoms.
Sounds like you had a good visit. I was wondering- did you mention the ear popping- where you hold your nose and blow really hard- you mention that you have had spinning before doing that- did you mention anything about fistulas? Did he say anything about when you went driving in the mountains and got dizzy from doing that?
Why are you not a candidate for surgery? Do you actually have a hole or just thin bone?
Are you just sticking with the gabapentin for now or are you on nortriptyline too?
Well Its werid, he did all the test where I put the googles on in front of him and then do valsavla but i was just fine. NO spinning, no dizziness nothing. I had to drive through the mountains again to get there and I was much better. Still a little off once the car would stop. That feeling you get if you ride a ride and you are still on it. But it went away much quicker than before. I asked him about the ear popping and he said it may be because i have thin ear drums. I am not sure how much I believe that is the reason only because a lot of people with SCD have that same issue. I asked him if it could be a fistula and he said no not at all. I didnt ask why so i am not sure why.
It makes me wonder why I was so much worse when all of this started as far as the dizziness goes. Why did I use to get spinney dizzy and now nothing? Gosh i wish i would have asked, i didnt even think to ask that. I do wonder if i may have had a fistula and it just got better. As many of them do. When this first all started I was unable to even get off the couch and take care of the kids. I could not even walk in the mall or drive. So i really am not sure…
The doctor believes my dizziness is due the MAV and wants me to up the meds. I am still in the process of getting to 75mgs. So i will let you know if it helps. I am much better in teh dizziness realm than i use to be but its not perfect, but def do able.
Oh and I am now on Nueronton 2700 and NOrtriptyline going up to 75mgs. I may start to wean off the Nueronton once i am stable on Nortrip.
Oh and he said i am not a condidate bc he feels the surgery, for me, might actually make things worse. He asked what my worst symptoms was and for me it was the humming. Since it has been coming and going, he believes it is due to MAV. I do to now. Thank GOD. i hated that the most
I do want ot mention that I did have Botox and Juvederm putin and about a week later all these symptoms happened to me. I cant help but wonder if it DID have something to do with all this. The doctor said mostly likely not but that maybe for me it brought out symptoms that I already had. I have to believe there is a relationship there. So, maybe that is why nothing really makes any sense. Who knows. I just hope if it was due to this that it all repairs it self.
what is the “zapper” that you mention in the caption of your profile?
Its a little devise that sends electrical impulses to your body. It was helping me with my headaches but not enough. Really the Nortriptyline is what is helping everything.
thats awesome the nortriptyline is helping. i remember you said when u walk outside everything in your vision bounces- i have the same thing- have either of the drugs helped with that? do you have any trouble with your balance and have either helped with that?
It has helped a lot with the bouncing horizon. My balance is decent but I have days where I sway. Its so on and off. I would say most the time I feel pretty good but I have days where I will wake up dizzy and the whole day I will be dizzy and it is the feeling of being slightly drunk kind of dizzy. Every day is different for me. I never know what I am in for. But all my dizziness is manageable now. I hardly ever get so dizzy I cant handle it.
thats good im glad to hear that things are moving in the right direction! yea it is hard to tell if some of the dizziness is coming from the scd too??? probably impossible to tell?
I figure if the increase in meds does not work, then its from the SCD.