Is this a personal belief or based on some studies/knowledge? I ask out of curiosity (and because I value your opinion as you seem quite knowledgeable) and because I'm still lost on what to do with my pain hyperacusis.
Hi
@TheDanishGirl -- Because my post you're referring to was fairly lengthy, I'm not sure what part of it you're asking about. If you could be a little more specific, I'll try to answer as best I can. -- What I can say is that I've done extensive research (decades) into many different aspects of health matters because of my own long and difficult journey with ME/CFS. In fact, I've sort of felt like I've worn a Sherlock Holmes hat for most of that time as I looked for elusive answers to my own health quandary(s).
What I learned from that journey is what many on this forum have learned for themselves: When we go to established, conventional health practitioners for help with a debilitating condition, the results we get are often underwhelming, to say the least. Most people with ME/CFS have been told their disabling symptoms are all in their head, and have a difficult time getting their health care practitioners to take them seriously.
The same can be said for today's doctors--including ENTs, audiologists, etc.--regarding tinnitus and hyperacusis. They simply don't understand what their patients are going through, and instead often recommend drugs, tests, and other things that not only do not help, but can be highly damaging, even catastrophic. When it occurs, they insist that what they prescribed could not have possibly been the causative factor(s).
So I guess to answer your question as best I can, I do believe I have some pretty specialized knowledge about overall health matters in general. A lot of "personal belief" is embodied in that specialized knowledge, and much of that belief is not based on the currently accepted criteria for what in the medical field has validity, and what doesn't. This post I made on
"the Flexner Report" gives a little more color on my own thinking. For the most part, I espouse health care approaches that lean more toward the natural, holistic, and alternative orientations, though I seek out solutions in every avenue I become aware of, including conventional. --
@Ed209
When it comes to tinnitus and hyperacusis, I have a strong belief that my own reliance on the principles of acupressure, acupuncture, diet, vagus nerve stimulation, use of a
unique spiritual mantra, and much more, is responsible for most of the improvement(s) I've been able to make in the past 3 years since my initial tinnitus onset. I use these approaches because they work for me, though it has often taken a lot of leg work to figure things out. For each thing I've tried that's worked, I've probably tried 25-50 things that didn't.
But that's sort of the nature of having a debilitating condition that few doctors understand. We end up to a very large degree left to our own devices. That said, I have enormous gratitude for a handful of health care practitioners I've found over the years who have not only helped me a great deal, but have lent a sympathetic and compassionate ear as well. I would encourage everybody on this forum to seek out those health care practitioners who fit in this category, and don't give up until you find them.
For perhaps a little more perspective, at one point in my life, it would take me as long as an hour to crawl to the bathroom from my bed after waking up in the morning (because of complete and utter exhaustion). I've now reached the point where I can relatively easily walk for 3-4 miles at a time (I guess that would be about 5-6 kilometers). I have such gratitude that I'm able to do that kind of walking, that it turns into a time when my tinnitus bothers me the least.
It was this kind of experience of being able to walk again that gave me the little bit of confidence I could muster in my initial days of catastrophic onset of tinnitus. That I might eventually come up with some kind of combination of answers and solutions to at least make my life worth living again. And it happened, even though it took a
long time, and a part of me still silently cries a little bit every day for the silence and peace I've lost.
Member
I'll try to look further on the site, but these day I have the attention span of a moth, so I have to take many breaks in order to read longer texts.
