So I spoke way too soon with my last post. It ends up the study was out and no body knew!
Here is a link :
http://onlinelibrary.wiley.com/doi/10.1111/head.12378/abstract
You will have to purchase the study for 3.50 (for patients) in order to view it, unless you are subscribed. I purchased it, but their are copy write laws you have to adhere to and are only allow to share with your Dr.'s. It's well worth spending the 3.50 because it's 10 pages worth of information.
The study actually shows two areas of the brain that are hyperactive (Hyper Metabolizing). YOU HEAR THAT??? It isn't an anxiety issue as most of these Dr.'s have tried to shove down our throats!! There is a physical issue going on in our brains. For the longest time I was scared to hear these results because I didn't want confirmation that I was broken, but truth be told I am ecstatic about the news; For one I can show it to all of my Dr.'s to pass on the knowledge and hopefully use it to win my disability case and two because I am not broken.... my brain is just hyper in two areas.
The study does not speak about any type of treatment, but fear not... I emailed Dr. Schankin who was the researcher I met with when I flew to California for the study. He is a very nice man and was very dedicated to spreading the word about VS and I am very grateful for knowing him and knowing that VS patients have such a wonderful Dr. on their team and equally can be said about Dr. Goadsby. They are both very smart and dedicated Dr.'s and I see them doing much more for a lot of different neurological issues and helping a lot of people. The email basically confirmed the study being released as well as another publication regarding the phone interview study (Part one of the VS study). He said there are SEVERAL (not just one) treatment options being looked at, but they are now in Germany (not California) and need to work on building a foundation there so it may take a little while. (This isn't bad news people..... We have an answer to this RARE condition..... Time is on our side!)
So..... I found all of this information out yesterday and was in the best mood... until I left my house. I started getting the sensation of falling forward while I was driving. YIKES! This happened to me back in 2012. If the Devil wants to get your spirits (even if their up) he will get them. So needless to say I've been having a pity party for myself. I understand from the study one of the areas that is affected for us is a part of the brain that processes perception for being upright... so it makes sense why sometimes I feel like my brain is flipping around or I feel like I am not steady. The migraines don't help either.
All I can say is Thank God..... I, for the longest time, thought "why me" as I am sure most have as well. The truth is.... why not us? Why not anyone? I have been watching a show called London Hospital (I am obsessed with all things British and it's one of the first places I hope to visit once I am in the clear from VS). The series is based on actual events and patient cases that were documented over time (early 1900's). I have watched where they experimented with new medicines and watched people die from not having medicines. It's taught me that as long as we are on this earth we are going to continue to evolve from our experiences. Every single person on this earth is going to face something that they don't want to... something that will make them say "why me?", but all we can do is face is and learn from it. And sometimes you going through that pain will help someone else in the future to avoid it or understand it better so they can get through it. With us going through VS we are going to be able to help others who get this. They can go to their Dr. and he will know what to do. Do you remember how you felt when you first got VS? I do.... I will never be able to forget it, but I feel like the world is gaining something from us going through this hell. It isn't for not... it's to help others.
Love to all of you!
xo
Candi
i was also diagnosed with bilateral vestibular hypofunction. Apparently i've had it for a couple of years, but i didnt know what the dizzyness or off balance meant until recently when the dr told me it is bilateral vestibular hypofunction. whenever i look at a wall closely or stare at an object long enough i see it move back and forth or up/down. recently, this seems to have gotten worse, to the point where i was unable to focus, concentrate (brain fog) and i would also get very tried /sleepy, which are all signs of bilateral vestibular hypofunction. I also have another problem in that i have narcolepsy. i went to my sleep doctor thinking my symptoms were because of narcolepsy and she gave me ritilian sr 10mg. This seems to have helped a lot, however i would get tired easily and needed caffeine to stay awake. This week she has given me adderall 25-30 mgs instant release. ive been taking 30 mgs once per day and so far has been working enough for me to function for 8 hrs at work. i still see things move back and forth or up/down, but im not extermely tired and i am able to focus, concentrate , and function enough at work (network engineer). i really believe from my expereince and since we share the same problem (bilateral vestibular hypofunction) that a stimulate can help. i know it can because im proof of it. i would recommend that you try ritalin sr or adderall. You're not going to feel 100 percent, but you'll at least be at 75-80 %, which is better than before. Let me know what you think or if you have already tried this.
ReplyDelete-larry
Did you shut down your FB page, Candi? You are pretty the only person that I could go to and ask questions since we're both going through the Bilateral Vestibular Hypofunction. Well, I guess Larry is now in the club, too. lol Just got finished reading your posts from this year. Continue to keep us updated.
ReplyDeleteYour friend,
Philip Rooks
Hi to both of you!
ReplyDeletePhilip, nope, haven't stopped posting. I did delete my facebook for now though. I did go and see a specialist at a university regarding the bilateral vestibulopathy and he doesn't think I have it. He said I am presenting more with migraine symptoms than ear symptoms. Don't get me wrong I still have some symptoms like I get a little off balance in the dark, but I have read of this in migraine too. Also with the recent VS study one of the locations that my brain is hyper metabolizing is in the balance area- so this would cause me to fail those caloric tests which I had failed. Usually a bilateral patient would fail the tests because of not getting vertigo, I would get the vertigo from the tests. So I guess, at this point it's up in the air. I won't rule out BV until after a treatment comes out for VS. My first symptoms in 2006 were similar to BV, but those cleared up until recently. I will keep you both updated though. God bless!