Good luck to you - where are you taking it ? It sounds like you are traveling pretty far. I only drive 2 hours to my clinic but I would have flown from New York to California to be in it . Money means nothing to me with this disease, I just want some of my life back.
I'm heading to beautiful Florida. Most trial sites never returned my request for info, and this site was the only one who responded who was willing to take someone from outside what they consider their local area. The good news is that this is the site I wanted as it's by far the most convenient from a travel point of view. Maybe not the cheapest, but definitely the most convenient at only a 3 hour flight away.
Congrats! Nice to have 4 of us to bounce things off of. I have to rent a car when I go, as my truck would cost twice as much in fuel. The selling point for me was the fact that I would be getting the real drug to try. Hey, Florida sounds good right now. Over cold and snow. In fact, I was grilling last night while it was snowing. Over it! Haha Prayers for a successful outcome for us all. The sun is out today, so I'm going to soak up some of it while it's out.
I think they almost need to do that in order to get participants, although this disease can be so terrible at times that I'm sure there are many that would go in the trial with a 50/50 chance of getting the drug. I'm trying to be positive about all of this, but it's not easy, when there's no sustained relief. Some days are good, but I just can't seem to recharge mentally and physically before the next $hitty thing happens. Not to mention, my symptoms are so all over the place I can't even begin to understand what's a positive change and what isn't. I'm been on antivirals now for almost 7 weeks and I've definitely noticed a change. Case in point over the last few weeks my inner ears have developed a blunt, low level pain at times. Not fullness, just what I describe as a feeling of tightness and pain. Is it the result of virus suppression or a result of simple progression of the disease. I have no idea...
The ear pain issue for me has only been when they are hypersensitive to high pitched sounds. Dogs barking or pots and pans can send me over the edge. When I was in wannabe remission for a year and a half or so, no ear sensitivity. Now, everyday since November. I roll through the day with cotton shoved in my left ear. Some days not as bad. I have never experienced the pain you are describing. The progression is baffling to say the least. Some burn out, some not. Remission for years, then returns. As I said before, I am praying for a successful outcome. That said, always planning the next strategical move if it is not.
Yes it's definitely not that. I have fluctuating sensitivity to low frequency, what many would call "distortion". Inexplicably some days sounds are fairly normal and then the next it's very bothersome. The pain I'm talking about is there in the absence of any significant sound. Who knows, here's hoping for better days.
yellowman, yes, that’s correct. The clinic doesn’t care about citizenship, just that I have Menieres diagnosis, which I do, and had to provide written proof.
How are you? Do you still not notice anything? On the other hand, do you think it would be possible to participate in the clinical trial from Europe? I guess not because they don't want to send the pills by plane.
I get the actual drug in May - you could fly here if they accept you I would guess , my clinic still needs 8 more people.
I can't stop working and I don't have the necessary money to be in the USA for two months Also, my first symptom (dizziness with loss of balance) appeared after flying, since then I dare not take planes, even the car bothers me if I go up or down high altitudes fast.
Cool news! The House Insitute released a video presentation today by Jonathan Kil on the current status of SPI-1005. Great overview of the promising results we've been seeing.
I moderate on a forum for people w/ Eagle Syndrome & see the same scenario there i.e. those who improve after surgery leave, but those who haven't had surgery or didn't get good results stay on. Unfortunately, this gives the forum a bit of a negative appearance in that a new member will see posts from lots of symptomatic people but not much in the way of encouragement that one can recover from ES. I do understand wanting to leave & put the "bad memories" behind once one feels better, but a few of us have stuck around to support & encourage those who are still suffering.
If I could get my shunt removed, maybe I could qualify for the study (this is a pipe dream). Seems like I'd still not be a candidate since a small part of my skull was shaved down for the shunt to be installed so my hearing will never be normal in my left ear even if it were to come back. No point in having regrets. I had the surgery at the time for unrelenting symptoms, & it did help for a couple of years. Just had hoped it would be more long term.