I feel your pain, friend, as my problems also plague the senses and respiration happening in my head. And not to worry about venting frustration. My persistence regarding thiamine therapy in fact relates a bit to the problem of so many of the available treatments being, as you say, experimental and of undetermined efficacy. Thiamine therapy is not yet a mainstream long COVID solution, at least not in the dedicated long COVID clinics operating today, but I would not classify it as experimental, really. First of all, thiamine is available over the counter and has been shown, for many decades, at least to be free of toxic effects even at very, very high doses (many times the RDA . . .really -- many, many, many, many times the RDA). Also, thiamine is routinely administered, orally and by IV, at hospitals worldwide, to treat life-threatening sepsis, for example. . .and it is the standard treatment for Wernickeś Encephalopathy (the very serious disorder that has probably given rise to the greatest body of clinical reporting on the benefits of thiamine on the autonomic nervous system.
Accordingly, whereas pharmaceuticals under regulatory review remain experimental until they pass muster for both efficacy and safety, vitamins like thiamine passed the safety threshhold long ago. Efficacy, of course, remains uncertain in any given patient, but because anecdotal reports of dramatic success for thiamine when used both in acute and long COVID cases have inspired clinicians to use thiamine in these contexts, I take the position that if clinicians have been willing to try the approach without the equivalent of FDA approval (surely in light of B1ś safety and the growing awareness of the phenomena of low-grade B1 deficiency and B1 dependency in the American population), I will feel secure venturing forth with B1, following the protocols that are circulating across multiple patient support groups these days. (That my internist likes my protocol helps, of course. . .but I do understand that even your compassionate and open-minded PCP may not sign off on thiamine right away.)
Enough said, then. Iĺl close by saying that even after we may have tried dozens of therapies none of which have helped, it still only takes just the right one to launch us to recovery. And the only way to increase chances of finding that right one is to keep taking leaps of faith. And by way of my own status update, this week, as I approached higher levels of TTFD dosing, I began to experience very significant changes in my nose breathing. I believe I am now in the early stages of a recovery response, even though, with easier inspiration, I now feel more pain as the cool air travels over my probably still inflamed nasal and sinus tissue. I feel more hopeful than I have in a long time, even as the process continues to be nerve-wracking at times.
Thank you for your encouragement. Of course I cannot quit, but I think of it often.
I had balloon inflation of my Eustachian tubes about six months ago. It did not help my ears (perhaps made it worse), but the procedure goes through your nasal passages and I suppose because it compressed tissue on the path to my Eustachian tubes, it had a positive effect on my breathing. I have been breathing more freely for these last months. Even when I feel congestion, I am still able to breathe.
My ears, however get more congested, and pressurized daily. My eyes are also involved. I have flashing lights and blurry double vision.
I had some B1 in my extensive collection of vitamins and supplements so I took some today. I always take B12. I will continue to read some of this research and go on this road with you.
Good luck to both of us. (And all others struggling along)