Ears are main post Covid complaint

Right. Doctors seem to be clueless.
I also have tinnitus and hyperacusis. Both conditions are very hard to live with. I want to look into Lenire for tinnitus, but not many ENTs know about it. I asked at the office I use, and they knew nothing about it. The closest place with the treatment for me is about an hour away.
If I manage to get an appointment I will post what I learn.

I believe that my post-COVID scenario closely resembles yours, and like you, ENTs and other specialists have been unable to pigeon-hole or assign a cause to the congestion that migrates across my sinuses, nasal passages, eustachian tube, and inner ears. I feel blessed that I don´t have post-exertional malaise/weakness, but like you, the difficulty I experience with blocked nasal breathing, tinnitus, ear/eustachian tube pain, and headaches is crazy-making and unlike anything I ever experienced prior to my mild and short case of COVID seven months ago.

I have posted across multiple topics here, and if you have spotted my posts, youĺl note that after massive amounts of self-directed research through both peer-reviewed publications and popular writings, I have settled on an approach in which I now have a great deal of confidence. Ultimately, I discovered the work of Dr. Derrick Lonsdale, a genuinely brilliant and rigorous scientist and clinician who devoted the latter portion of his career to establishing that syndromes like what you and I are experiencing now, especially when following on a tremendous stressor (like a viral infection) are potentially traceable to neurological dysregulation that, in the view of an increasing number of researchers, generates many of the features, in subacute form, of the well-known nutritional deficiency disease beri beri.

I have a large notebook of materials on all this that I am still wading through, and I am committed to reading Dr. Lonsdaleś main opus on the prevalence of thiamine deficiency and associated dysautonomia in the general population.

In the interim, relying on a variety of protocols developed by followers of Dr. Lonsdaleś research, I started on thiamine supplementation about 8 weeks ago, very slowly and gradually increasing the strength of my daily dose, and moving from more commercial sources of thiamine to the form that Dr. Lonsdale popularized through his clinical practice (TTFD). A few weeks in, I was clearly still stalled, and so I worked with my primary care doctor to taper and replace maintenance medications that, it turns out, were probably constantly depleting my thiamine levels, and now I am finally starting to see some changes in my respiratory picture. This will be a long haul, but I intend to tough this out, because I have identified no long-COVID clinics in the U.S. that appear to be offering treatments based on any deep understanding of the COVID virus´s harmful action on multiple metabolic pathways.

Importantly, I have come to realize that I was suffering from multiple disorders, for decades before I got COVID, all of which have been identified as signs of probable low-grade thiamine deficiency or defects in thiamine metabolism.

There is no single thiamine dosing protocol that works for everyone, and so trial and error is called for. This is well known, e.g., in the Parkinsonś Disease community, in which many patients are self-treating with thiamine, with doctor approval, via a trial and error approach and using various forms of thiamine.

Needless to say, there is much more to be said about all this. But in a nutshell, my working hypothesis is now that the vasomotor regulation responsible for the nasal cycle and for proper drainage of the sinuses and eustachian tube in a healthy person was severely impaired, in my case, by the COVID virus, and that I was highly susceptible to a crash of my vasomotor function in the upper respiratory tract through a decades-long subacute/low-grade thiamine deficiency that was affecting me steadily with other disorders, such as severe dry eye, recurrent mouth ulcers, episodes of prolonged fatigue and tachycardia, episodes of vertigo, and episodes of severe anxiety. Every last one of these problems has been studied in relation to thiamine deficiency, and I now take this connection seriously.

Please consider reading as many articles by Dr. Derrick Lonsdale as you can find online (in a range of journals and newsletters), and please tune in to the website operated by Elliot Overton, a British functional medicine practitioner whose specialty is developing and fine-tuning thiamine therapy.

If thiamine turns out to be our solution, we shall be very lucky, because to date, even very high doses of thiamine have not been been associated, across a range of studies, with toxicity. Our ability to absorb thiamine, though, can be impaired after a prolonged subacute deficiency, and so yes, we can experience side-effects, even from lower doses, at the outset of supplementation, but again, but toxicity is essentially unheard of in relation to B1/thiamine (and that is why my primary care internist felt comfortable with my proceeding). Whatś more, some of us improve substantially on doses that are actually quite low. Right now, I take 150 mg/day of allithiamine and a B complex containing 50 mg of thiamine mononitrate. . .AND, per Overton and others like him, I make sure to cushion the thiamine with all the other B vitamins (in complex form) and also with daily potassium bicarbonate (because as oneś metabolizing of thiamine increases, the bodyś demand for this type of potassium seems to increase). Godspeed to you, and please stay hopeful.

I must admit I am worn out trying this, that, and the other with no discernible improvement, and in fact symptoms worsening.

I will take a look at Dr. Lonsdale’s theories and discuss with my Primary care doctor.

Thank you for the information.
Please update the results of treatment.

Understood, but please consider that some proposed solutions are merely palliative in nature, whereas others are premised on basic science reaching to what may be reversible root causes of a given syndrome. I have abandoned quite a number of palliative regimens, sometimes without giving these all the time needed before they might have produced relief, but thatś because while resorting to these, I have continued to try to identify therapies that work deeply enough actually to reset whatever system or systems of ours has/have been dysregulated by COVID. Thiamine repletion/supplementation continues to strike me as one of the root cause-focused therapies that has the potential actually to restore us to health, ideally helping to improve symptoms along the way to recovery. I wish I could be optimistic about your primary care physician coming on board with thiamine therapy, but my own experience, so far, is that the most that one may reasonably expect is the approval and moral support of a primary care provider who grasps that thiamine is a direction that cannot hurt and just might help. Even long-COVID specialists, these days, seem to be locked in to a very limited set of regimens to try, most of which are merely palliative. Ǹonetheless, it is always worthwhile to learn as much as we can, and then attempt to engage our providers sufficiently so that they may themselves read and study more.

My doctor is very open to trying my ideas. He acknowledges long Covid, but of course all the treatments are experimental. (I have tried many).
I am two and a half years into this and I must admit, many times have felt like stopping all treatments, and appointments because everything has failed.

I know some people have had it worse than I have, but because my issues are HEAD issues it is very debilitating.
But, as I said I will do some reading with regard to your post and also discuss with my doctor.

I don’t mean to sound unappreciative of the information. I am just exhausted and incredibly discouraged.

I know this post was from a year ago but I’m in the same boat. I’ve had long covid syndrome since 2020 and have a lot of different medical issues. The latest thing is the ears. I started randomly getting chronic yeast type infections in my ears. Then I flew in a plane and got covid and the ear problems persisted. The infections kept coming back, I’d go on antibiotics and ear drops. Now my ears/head feel so full, so much pressure, tinnitus is bad and I feel like I’ve had hearing loss. I made my first appointment with the Mayo Clinic in Iowa where I live. That is next week. I feel like I’ll get help there. I’ve learned that normal doctors such as immunologists, ENTs, etc don’t understand the complexity of long covid syndrome and there’s a lot of medical gas lighting. It’s so hard. I can relate! If you have any updated information about your ears please let me know, if you don’t mind. Thank you

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)

I will be cheering you on. Please, as much as possible, look into the many approaches that can be taken in B1 therapy so as to avoid getting locked in to a regimen that features too high a daily dose, too low a daily dose, titrations upward that are either too rapid or too slow, or reliance on a form or forms of B1 that are simply not working well for you. I think the best resource for getting exposed to how different regimens have worked for different people is the collection of materials that Elliot Overton has made available online. His lengthy pdf on B1 therapy is, alas, available only for purchase, but Overton has published one or more free videos (You Tube) on the nuts and bolts of B1 therapy, and I have found the video material to be a great launch for myself. Since every patient needs an individualized program, trial and error is going to be part of the process, making our own observations and senses of how we are responding perhaps even more important than are the published protocols for the therapy. Today, I took another leap of faith, a propos: Even though I am having a few bad days again, I deferred my next ENT appointment for another 7 weeks, to give myself a chance to progress further with thiamine. My flare-up this week is very likely a paradoxical reaction to the pace of my titration upward, and so long as I remind myself of this, and refresh my familiarity with paradoxical reaction in B1 treatment, I re-muster the courage to keep going before another resort to the very limited options and outlook offered by the various ENTs I have seen so far. We´ve come this far through quite terrible times already . . . Now we just have to appreciate objectively the glimmers of improvement that really do start showing up over time. It helps me greatly to remember, as well, that repleting our thiamine levels (on whatever basis is required by the respective states weŕe in) is a very, very deep way to address disease. There is no known lasting harm that can come of this therapy, and if it works, the payoff can be tremendous for our overall health status far into the future.

I honestly can't remember if I posted here before or not, but I had slight hearing loss and a feeling of muffled underwater in one ear. ended up being patulous eustachen tube. drops help, but sting. another fun enduring symptom since covid in 2020.
https://stanfordhealthcare.org/medical-conditions/ear-nose-and-throat/patulous-eustachian-tube-dysfunction.html