Exciting Things In The World of Meniere's Disease

It seems that all of a sudden, the wheels of motion are starting to turn in a positive direction for Meniere's Disease sufferers. I was contacted last week about participating in a trial of the injectable steroid OTO-104. I've been following this drugs' process from first clinical trial through today, and I believe OTO-104 is on it's third or fourth clinical trial. I won't know until this week or next if I've been approved for the clinical trial, but I'm happy to hear that OTO is pushing forward. Hopefully, it will be proven effective and useful, and the FDA will clear it for public use.

In other news, a friend of mine with Meniere's Disease in San Diego is undergoing an even more exciting form of treatment right now that, unfortunately, I can't yet discuss here. When he returns home from treatment, and with his permission, I will share his experiences. From the email I received from him today, all signs point to a potentially very viable solution for us. I have my fingers crossed for him, as he is our guinea pig with this treatment. If it goes well for him, I will take the plunge and get the treatment myself. More to come on this.

I feel very excited and optimistic at all of the new pushes toward a cure. This is indeed an exciting time for us, and I hope beyond hope that a solution is coming....soon. :)

I will write more as soon as I have permission, and have more to share. Until then, onward we go!

xo,
S

The Protocol

Having undergone nearly every traditionally recommended therapy or treatment in existence for Meniere's Disease, including diuretics, low-sodium intake, sac decompression with shunt surgery, serc, verapamil, valium, vestibular rehabilitation therapy, steroids, and finally, the vestibular nerve section surgery, and yet still continuing to suffer with dizziness, ringing in my ears, and hearing loss, I have chosen to partake in lesser known therapies over the past few years. These less traditional therapies have included chiropractic work, vitamin regimens, acupuncture, NUCCA, and even a spinal tap. To say that I have tried everything and anything to cure this illness would be quite accurate, if not an understatement.

And yet, the Beast persists. But to his dismay, so do I. I refuse to accept that my fate is one of disability and sickness. I refuse to accept that there is nothing out there that will solve this issue for me. Instead, I push forward, continually doing research on new modalities, new clinical trials, and new options that may provide some help and hope.

About a year ago, I learned of Stephen Spring, and his new protocol for treating Meniere's Disease. Mr. Spring is a researcher and a Meniere's Disease sufferer himself, based in Australia. He has, based on his extensive research, developed a protocol for treating this illness, that has worked wonders for himself, and for many other sufferers. After having a great chat with him via Skype, I decided to undertake this treatment as well.

His treatment is not an overnight cure. It's not a one-stop solution. It is multi-faceted, and requires diligence, as well as an understanding doctor to order certain blood tests and other tests as needed while you undergo the protocol. Thankfully, my specialist is one of the most kind, understanding human beings on this planet, and he has supported me in every endeavor that I have undertaken to find a cure.

Mr. Spring expects this protocol to take a year or longer to help me, as I've had this illness for some time now...ten years to be exact. I am only into my 12th week, so I cannot report much as of yet. I can say that the ringing in my ear has gone down quite a bit, which is a positive sign. I haven't had a reduction in dizziness as of yet, which of course is the thing I hope to eradicate most of all. I have heard from others that the dizziness tends to ease up around week 28-30.

I will continue on the protocol, which is quite expensive, but the theory behind it makes great sense, with the hope that I too will benefit from this. If this proves to be the solution to my dizziness, I will waste no time in advising everyone I know with this illness to undertake Mr. Springs protocol. I won't know for some weeks if it will have a truly positive effect on me, though. So, until then, I will keep posting updates here, and keep searching out updates on new treatments for Meniere's Disease.

I hope to have some good news to report soon, friends. Until then, onward we go....

Goals & The Beast

First off, I apologize for such a delay since my last post. I have been heavily focused on finishing up my Film Production Degree from SLCC, which I was able to do in December of 2013! Woo hoo!

Despite having Meniere's Disease, I was able to accomplish yet another goal, and it makes me all the more vigilant in beating this illness. With guidance and support from my amazing professors, I was able to write several screenplays, shoot, direct and edit two short films and several commercials, and, above all, fully realize that filmmaking and storytelling is where my passion lies.

My next goal is a lofty one, but one that I hope brings about awareness and funding for research for a cure for this bloody illness. I will post updates to this project as I go along, but for now, I want to bask in the glow of having beaten the beast, at least long enough for me to finish a lofty goal.

xo

Shepherd

Last year, I wrote and directed a pretty decent short film called Shepherd. It's a simple story set around lost memory and found second chances. When it was finished, I had glorious plans to enter it into film festivals across the country. But, per usual, my inhibitions kept me from putting it out into the universe. I was then quite surprised to find out this week that Shepherd is screening at a special Filmed in Utah event tomorrow night at the Salt Lake City Public Library. Amazing.

Apparently, the universe gave up on waiting for me, and found the movie on its own. At least, that's what I choose to believe. :)

So, if you're free, the screening starts at 7pm. Now I just have to keep from breaking out in hives from anxiety until then.

Serc

Serc, or betahistine dihydrochloride, is a special medicine developed to treat disorders of the inner ear. For some reason, Serc, is readily available in other countries, and is quite often prescribed in Europe and Canada for Meniere's Disease, but not so readily available in the US. Serc works by improving the blood flow to the inner ear, and also works on normalizing the way in which inner ear nerve endings respond to outside influences. 

My doctor let me try Serc for a time. I was surprised to learn that I had to have it formulated at a compounding pharmacy. In the US, a compounding pharmacy has the ingredients and capabilities to compound certain drugs and medicines that either aren't mass produced in the US, or need to be tailored for a certain patient. I was lucky to find a compounding pharmacy near me that could compound my betahistine. I was unlucky to learn that compounding can be, and was for me, very expensive. I think I stopped taking Serc because of the high cost. I'm not sure if I even gave it a fair shot of helping me or not.

In my continued effort to improve my health, I'm going to give Serc another shot. I will start tomorrow, and report my progress here. Fingers crossed.

Onward we go, fellow soldiers.

The Documentary

I'm very excited about this post. For almost a year, I've been in production on a documentary about Meniere's Disease. I've been fortunate enough to have the support and participation of Meniere's Disease sufferers around the world. My team and I are currently putting together applications for grants, building out our Kickstarter page, and have almost finalized the trailer. The goal of this film to is raise awareness about Meniere's Disease in order to further funding for research. As I mentioned in a past post, Meniere's Disease hasn't had much of a voice, but I'm happy to utilize my film education and training to give all of us a voice at long last.

I will continue to post updates to this project here. If you would like to participate or support this film in any way, please email me. Thanks friends.

skyecemerson@gmail.com

Less Movies, More Meniere's

Less Movies, More Meniere's

Film school is officially finished, and now my focus turns back to Meniere's Disease advocacy. I will still utilize this site to post about films, but I've been neglecting my Meniere's Disease updates, so here is what's happening with Meniere's Disease and me:

The negatives: What the what? Hearing in my left ear continues to decline. Boo. My audiologist recommended a hearing aid. So, me being me, I had to get the mack daddy of hearing aids. It's a tiny little thing, barely noticeable. The cool thing is that it works just like a Bluetooth. I can program my IPhone to ring directly to it, and it will also play my Itunes. This could be very beneficial in boring work meetings. Only kidding. Sort of.

Now, if only I can start remembering to wear it more often. I'm pretty terrible at this. I blame the Meniere's Disease brain fog.

The vertigo and dizziness have been hit and miss. I was very hopeful that the VNS surgery would have completely quelled these spells. Alas, the vertigo has found a way to break through on occasion. I'm now considering an alternative therapy that, if I do undertake, I will discuss further here in a month or two.

The positives: I continue to work, live and play. I am happy. I am functioning. I refuse to let this illness ruin my life. I have great family and friends and loved ones who support me and help me when needed. I am never going to give up fighting this illness. I continue to travel and enjoy life its fullest, and if Meniere's Disease thinks it will take that away from me, it has another thing coming.