Meniere’s has no known cause. If your symptoms can be traced to a cause then you technically don’t have Meniere’s anymore. You’ve got whatever that other thing is called instead. It is the nature of the disease that finding a cause for some group of sufferers removes them from the pool who don’t have an explanation for their symptoms. There is no official procedure for this getting done, it is simply the way these things work out on the ground, where people like you and me and everyone reading this simply have to cope with our daily challenges. It’s all most of us can do.
The bandaid problem is why people reject modern medicine and decry big pharma as creating classes of people who are shackled to thier treatments, instead of finding a cure. They don’t understand that manufacturers largely serve the demands of consumers. Big pharma would love to drive demand the way that conspiracy fantasist have nightmares about, but individuals are fickle and hard to predict. It is very tempting to point to people just wanting an answer and to be made comfortable afterwards as not understanding what could actually be possible with real answers and real cures. But they hurt and they are confused, and they just want to stop hurting. To have that answer.
I was satisfied with my diagnosis for many years. I had no expectation of surviving long beyond my children’s adulthood, I just wanted them to have shelter and food and an education. I needed a diagnosis and disability to get those things for them. Now they are adults and I’m still here slowly inching my way back into what might pass as a normal life. I still can’t take the stress of regular work, but I can write and think and it’s kind of hard not to obsess over limitations that could be breached if only there was a treatment that would cure what ails me.
So now I pursue that end. Betahistine, that blind treatment stumbled upon by European doctors desperate for something that might make their patients be able to return to work has given me back a clarity of thought that I didn’t expect to ever have again. It isn’t a cure, no, but it’s a world better than where I was two years ago.
I’m lucky. I’ve been given the time to make these slow adjustments instead of being forced to kill myself in an insurance scheme that probably wouldn’t have worked anyway, but was the only hope I had without disability back in 2003 when I was down to my last straw. If someone had told me then that betahistine could do this for me, I’d have rejoiced even though I would still have the limitations of chronic illness to deal with. I’d still have my architecture license and some larger portion of my now-lost abilities to work with.
I wouldn’t have rejected the treatment because it wasn’t a cure, that it would just be some limited measure of improvement. That I would be shackled to this drug for the rest of my life. In the end those are the choices we all have. Take what you can get and try to do better next time or sit and do without because it isn’t exactly what you are looking for.
As for the the people who don’t find their way here, at least there is a here to find now. There wasn’t even that back in 1984 when I had ear pressure that doctor’s told me wasn’t there. The internet is a major improvement in disseminating information, even with all the crazy conspiracy crap that comes with it. If sufferers don’t find us then hopefully doctors will and pass the information on to the clueless patients. Information takes time to spread and most of us would just like to have the time necessary to see their way past the hurdles directly in front of them.
I can’t make people listen to me. I’ve tried that countless times. It doesn’t work. All I can do is put the information out there and hope someone gets a benefit from its existence. By the same token, researchers can only conduct the experiments that come to them and then write up the results. Doctors can only use their training and the knowledge they know to look for.
The body is an impossibly complex biological machine that wasn’t evolved to do what we do with it. There is going to continue to be bad side effects from this, probably for as long as there are people still living. I wish there was an operating manual for the damn things, but we don’t appear to have them. We’re just going to have to make it up as we go along and hope for the best. I wish you good luck with your search for answers. Better luck in less time than it took me to get here. Let me know how it works out?
