Keto Ear Experiment Update

*Swistle appears before you wearing lab coat*: Keto for Ears was not the immediate, clear success one might have hoped for.

The good news (for me) is that the adjustment back to keto was nothing: after several weeks off, I was expecting some re-entry pains, and there were none—possibly because I am still in the “I HAVE A NEW LEASE ON LIFE!!” stage of illness-recovery, where I am so fervently appreciating things such as “breathing through my nose” and “being able to do more in a day than shower” that I feel pretty good no matter what.

The not-good-not-bad-just-data news is that I did not experience any swift, clear ear relief. There could be many reasons for this: (1) it hasn’t been long enough; (2) the inflammation is not the main source of pressure/pain after all; (3) this is not the kind of inflammation keto helps with; (4) who knows, some other thing, I’m not actually a scientist.

It was especially disappointing because I’d thought of ANOTHER reason to think it might help: the keto diet can be helpful for people with acid reflux (like me!), depending on their own roster of acid-generating foods (if it’s “meats and cheeses,” keto will not help). On days I take off from keto, I generally need to take two of my daily acid-management pills, instead of the usual one pill. And ears can experience symptoms of acid reflux, because everything is connected up in there. (Speaking of which, did you know a light, persistent cough can be a symptom of acid reflux? I’d thought I was developing asthma, which runs in the family, because I had a light, persistent cough unrelated to illness, and I coughed more whenever I laughed. Nope: it was acid reflux. It went undiagnosed for awhile because I kept saying no to questions about experiencing heartburn.) So I’d wondered if maybe the acid from my non-keto eating was percolating up in my ears and increasing the irritation. But apparently not, because I have switched back to keto AND I am taking two of my daily acid-reflux-management pills per day to hopefully prevent me from getting an ulcer from all this ibuprofen, and still there is no change to the ears.

Well! I had much better luck with a second experiment, which was “Let’s see if Swistle, who normally cannot assert herself with authority figures, can leave this fourth doctor appointment with either an oral antibiotic or a referral to an ENT.” Success! I have a prescription for augmentin, which I will take twice a day for ten days. I have just taken my third dose. It is too soon for me to appear before you in a lab coat to report results.

If this does not work, my next stop is an ENT. Because what worried me most about my (fourth) doctor appointment is that the doctor said my ear didn’t look too bad. She said the ear canal was a little pink but not red/”angry” and that the ear drum was “not bulging” and…I can’t remember if she said it was “a little opaque” or something similar, but anyway, her tone was that actually everything looked pretty okay in there, as if the ear drops had helped considerably. SHOULDN’T THAT WORRY HER, when a patient has been describing pain the way I was describing pain (“scary” / “keeps me from sleeping” / “wakes me up every night” / “I am taking four ibuprofen at a time and it is not enough” / “I have looked with temptation at the extra prescription painkillers I shouldn’t have saved from previous medical situations but did save”)? Shouldn’t she think, “Wait: if what I’m seeing here doesn’t line up with the reported pain levels, what is it I’m NOT seeing?” But I don’t think most doctors think that way. I think most doctors, in this situation, think that if what they can observe doesn’t line up with the reported pain, then the pain is misreported. My hope (lessened somewhat by a coworker’s recent experience with a shruggy, listless ENT) is that an ENT would have more of a Detective frame of mind.

I wish I could see Edward’s pediatric ENT. He was the kind of doctor who gets his teeth into an issue and CANNOT LET GO until he has answers. He kept Edward in the hospital for ten days, which involved multiple and vigorous fights with our insurance company (he mentioned that he himself had to speak at length to someone high up in the insurance company, and finally had to pull rank about WHO KNOWS MORE ABOUT WHAT A CHILD NEEDS MEDICALLY, ME OR YOU??), because he felt something wasn’t right, and he wasn’t going to stop pursuing it until he felt it WAS right. (And he was correct about something still being wrong. That seems like an important detail.)

Well. If wishes were etc. Perhaps I will find an ENT who is just as knight-like! We need a gender-neutral term for knight-like. Just as…valiant? No. Terrier-like? That’s more what I’m going for. I liked the “riding into battle” feeling of the word knight, but I like the implied teeth of a terrier. Assuming that’s what terriers are like. Possibly I am thinking of another breed.

32 thoughts on “Keto Ear Experiment Update

  1. Megan

    I’m glad you’re trending in the right direction. I just have a little story about doctors who dig their teeth in and don’t stop. I had pancreatitis last year (actually December 2022) due to an alarming number of gallstones. Like hundreds. I had my gallbladder removed and went about my life. But I still had recurrent pancreatitis. My GI doctor, in an effort to get to the bottom of that, decided to do an endoscopy and colonoscopy. Turns out I had very large, precancerous polyps. I am having a repeated colonoscopy next month to make sure everything was removed, but had he not been so insistent on finding a cause of the pancreatitis, he may not have found the polyps. He said if I had waited several more years for the recommended age for a colonoscopy, I would have surely developed colon cancer by then and it would’ve been too late for me!

    Side note: we never really found a cause for the pancreatitis, other than my gallbladder was ridiculous. Like, my surgeon has never seen so many gallstones. So the pancreas just took longer to go back to normal.

    Reply
    1. Alyson

      I had stomach pain, gallbladder removed, continued intermittent pain for FIVE YEARS. Where doctors just shrugged. 20 weeks pregnant, pancreatitis.

      Now for years I had been saying it felt like food was stuck in my stomach and it would hurt (hurt here means excruciating ) and I would vomit and it would go away until next time.

      When you’re pregnant, you’re finally a person or incubating one. Sphincter of Oddi. The sphincter would randomly get stuck closed so the bile wasn’t going into my stomach so the food would try to leave but wasn’t digested enough.

      Anyway. Exactly what I described. Had it snipped 15 years ago and been fine since.

      Flipping doctors.

      Reply
  2. Sarah

    Could Edward’s ENT give you a recommendation for an adult ENT? You could let him know the trouble you’re having with the dismissive treatment your current doctors are giving the problem “giving severe and persistent pain little regard” and that you would appreciate seeing a specialist that digs into the issue like he does. Might be worth leaving a message at his office? I’d love it if this could get resolved for you and someone could take your symptoms seriously.

    Reply
  3. Suzanne

    Favorite parts, in addition to the whole last paragraph: “(4) who knows, some other thing, I’m not actually a scientist.”

    “I have just taken my third dose. It is too soon for me to appear before you in a lab coat to report results.”

    The persistent ear pain sounds like such a nightmare and I am so sorry you are STILL enduring it.

    Reply
  4. KC

    Yes. “The visible symptoms have gone away, but the invisible symptoms are still present to unacceptable levels” should 100% trigger a doctor to wonder if there is something additional/different going on, but also often does not.

    I’d note, in part because I get furious at incurious doctors dismissing patients who are suffering, that doctors are at present especially overworked/tired because the pandemic did… a lot… and the US insurance system *highly* prioritizes spending as little time and as few tests on each patient-visit as possible. (15 minute follow-up visits for people with complex, chronic medical conditions? COME ON insurance; maybe you can get away with that for a list of resolvable conditions you expect to not need much follow-up care, where the first intervention works 99% of the time and you only need to verify that it is in fact working, but… things that are chronic/long-term and that do *not* tend to resolve with the first treatment effort maaaybe need more than 15 minutes for discussion and new treatment plan?)

    But: the doctors are pinched, and they are tired, and they are penalized for being curious (and also some of them have lingering brain fog from covid, at least I am hoping that is the explanation behind one of the doctors I saw…). BUT ALSO AUGH why are things like this, can we get a healthcare system that works for more than just the people who have quickly resolvable, textbook-presentation conditions? And that does not penalize doctors for taking on patients who are a medical challenge? *sigh*

    Anyway! May the ENT be curious and smart and figure it out well! (either that or it all just clicks and the pain vanishes before you get to the ENT; that would also be nice.)

    Sorry keto did not fix it (or has not yet fixed it). It is intriguing, though!

    Reply
  5. jenny

    Any chance it is related to your teeth? Sometimes ear pain is actually a tooth issue. Have you tried Sudafed or something similar to release sinus pressure?

    There’s nothing worse than ear pain. Especially when it seems like it has gone on forever and you’re not sure when it is going to end.

    Reply
    1. Swistle Post author

      This is a riveting thought, especially since I relatively recently (about 2 months ago) had the upper right back molar pulled, and this is my right ear. Nothing hurts in or around my mouth, even if I press hard. But maybe…something up beyond where the root was? I know when I’ve had a sinus infection, it has manifested as tooth pain.

      I have tried the little red decongestants that require you to show ID at the pharmacy; I’m not sure if they helped or not, but it felt good to feel as if I was Doing Something. I remember hearing that decongestants shouldn’t be taken for more than three days or they can cause a rebound effect, so I’ve been saving them for special (like when my nose was ALSO congested, which it no longer is, or when it’s 1:00 in the morning and I will try ANYTHING).

      Reply
      1. Mary Ann

        I was coming here to ask about teeth too! Many years ago, I had a terrible earache – bad enough I went to the ER while on a family trip. It turns out I had an abscessed tooth. I had almost no mouth/tooth pain, but my throat and ear HURT.

        Reply
  6. Allison McCaskill

    I just saw my doctor yesterday and she was the very opposite – I was like “it’s just a cough, it’s not that bad” and she was like IT SOUNDS VERY BAD, and listened and looked at all the things and wouldn’t let me leave and I DO appreciate her fully as much as I should and I wish everyone had the same kind of doctor. This has been going on for so long for you it must be exhausting. Take the illicit leftover drugs, and bug all the doctors.

    Reply
      1. Izzy

        I was thinking you were looking for an adjective, in which case I’d like to suggest Chivalric. But Paladin is wonderful as a gender-neutral noun!

        Reply
      2. Sanna

        I think Knight is already gender neutral, but I grew up on Tamora Peirce books. Anyone can be valiant, swordfish, and ride horses!

        Reply
  7. Berty K.

    Ugh.
    I was misdiagnosed with mono every week for 3 weeks (going to the pcp once each week) before they finally sent me to an ENT and it’s had lasting effects (not that I think you have mono).
    I’d encourage trying to get on an ENTs calendar now as the wait could be awhile. Then even if this clears up you’ll have one next time.

    Reply
  8. Buttercup

    Anecdata in case it helps: on winter solstice in 2022, I developed a massive headache. I never had headaches. Then I was super fatigued, lots of headaches, couldn’t wear my glasses, couldn’t read, could only stare into space. Fatigue lasted months, though slowlly got better. Headaches were strong and constant. CAT scan and MRI were negative. Neurologist gave me a low level SSRI to help with the headaches, and then I started getting tinnitus and ear pressure. All day long, especially when grocery shopping, anything that involved looking down (which is everything!), driving, etc. It took 6 months for a medical professional to diagnose the problem as vestibular. I think it hadn’t been caught because vestib issues usually involve balance, dizziness, or vertigo, and I didn’t have any of that. My vestibular ocular reflex was malfunctioning. Went to vestibular PT and it helped so much. Still not back to baseline, but it’s so much better. I still get ear pressure and tinnitus, but it’s not constant like it was before.

    Reply
    1. Corinne

      This was meant to be a response to Henry confirming “paladin” which is a word I will have to ask Benny about when he wakes up at noon.

      Reply
  9. Tina G

    You may need a prednisone pack (the ones with the tapered doses) to break the inflammation. That works wonders for most people with residual ear fluid and pain. (It briefly helped me when I thought all I had was a post-viral fluid in my middle ear 20 years ago but my ear issues turned out to be something far more complicated and rare)

    Reply
  10. Ashley

    I’m seconding the suggestion that you get an ENT appointment ASAP because sometimes ear stuff is very time-sensitive. I had a bad ear infection a couple of years ago and even once the pain stopped my hearing was still mostly gone in one ear. After a few weeks I made an ENT appointment and I was so glad I did because I ended up needing to do a course of steroids. That set everything back to normal for me, but during the process I read a lot of advice and most said that steroid treatments are most effective if you use them within 4-6 weeks of the infection. So I’d try to get a fast-tracked appointment if possible. (I’m pretty sure I was prescribed prednisone, as the commenter above mentioned.)

    Reply
  11. weirdmagnet

    I want to start by saying I don’t think you have what I had, but wanted to commiserate about ignored ear pain.

    I had ear pain for a year that none of the doctors I saw took very seriously, even after being diagnosed with a BENIGN TUMOR IN MY INNER EAR. Because it wasn’t bad enough to wake me up at night, it wasn’t bad enough to do anything about. I woke up from the brain surgery to remove the mass, and my head hurt half as much as it had for the previous year. Telling one of my surgeons this during a follow up was the first time anyone acknowledged that it was a lot of pain for a long time.

    My recovery is going fine, but yeah, doctors don’t seem to focus on pain anymore. I think the pendulum has swung to the other extreme in response to the opioid overprescribing.

    Reply
  12. Liz

    Hoping you get relief from the ear pain and also that you get a doctor to take you seriously about the pain. As I dittoed above, I would call the pediatric ENT you like to get a referral to an adult ENT he trusts.

    Reply
  13. Rose

    Well, I recognize that there’s a good chance that my comment is not applicable to your situation, and so I certainly don’t want to come across as alarmist. I share it anecdotally in case you find it interesting or someone finds it useful. But my ear situation was also time sensitive.
    I was on a trip a few years ago that involved flying and swimming, and I don’t remember feeling sick, but maybe I was mildly and I’ve just forgotten. At the end of the trip, I had a right ear that seemed plugged with a feeling of pressure. I kept thinking I had gotten water in it, or it hadn’t popped from the airplane. I went to see my PCP and later an ENT when I found it still hard to hear out of after several months, but they both just said they’d keep on eye on it.
    Fast forward several years, and I have just been diagnosed with slow but steady hearing loss in that ear. When I went to see ENT after the hearing test, she said it looked like I had had a virus that damaged my ear originally. If only I had acted in the first few weeks with… (hmm, was it steriods? Now I can’t remember what I was supposed to take…), it could have been resolved, but now I must resign myself to increasing hearing loss in that ear. (I’m in my late thirties.) Well, shucks! Too bad nobody mentioned that at the time.
    Probably this is not your case at all, but just in case, I second (or fifth?) the idea of seeing an ENT. Hopefully you can find one that’s helpful!

    Reply
  14. British American

    That does sound like awful pain and I know what you mean about those painkillers that you aren’t supposed to keep but do. Yep. My MIL was having sinus issues and one ENT she saw was not helpful at all. Not sure how exactly she ended up at a second one, but the second one was wonderful – just like you described with wanting to get to the bottom of the problem and MIL ended up having some surgical procedure that did help.

    In other ENT stories I wasn’t happy with the one I saw for my son years ago. My son gets severe nosebleeds and has for years – it got to the point where we should have gone to the ER because it was coming out of his eye. We did get it to stop at home and I scheduled an ENT for the next day or so. The ENT didn’t seem very concerned and just told him to use saline spray 8 times a day and said that if that didn’t help then they could look into testing for blood disorders and that they would have to put him to sleep to cauterize it, which of course terrified my son and he said no way. We ended up finding an online product – NasalCease / BleedCease and that does stop them at home – but I feel like the ENT should have just tested for bleeding disorders then or referred him to be tested for that. The family Dr didn’t seem to appreciate the severity of it all either, as I explained that I carry around the NasalCease in my purse in case he gets a nosebleed and I try to convince him to always have one with him in his wallet / school bag.

    Anyhow, it’s frustrating when the Drs don’t see the concern. I hope the medication helps and it just clears up.

    Reply
  15. Mika

    I am starting to wonder if this is referred pain from a cracked tooth or other tooth/jaw issue. It is pretty common for tooth pain to end up hurting in your ear because nerves are weird like that. And you mentioned some teeth issues in the past few months I think? It’s worth calling your dentist about and asking for appointment at any rate. I hope you get answers soon!!

    Reply
  16. Melanie

    My dad had persistent ear pain following inflammation years ago and he couldn’t get his PCP or ENT to pay attention. They kept dismissing him until he finally went to our family pediatrician and said, I know I’m an adult but my doctors don’t listen and you do. The pediatrician diagnosed a rapidly spreading virus and referred him to his own personal ENT. Like a few commenters above, unfortunately it did have lifelong side effects because by the time he went to the pediatrician it had been months and months of pain. All of this to say- go to the pediatric ENT! It’s worth it!

    Reply
  17. Amy W.

    I suggest asking the pediatric ENT you had such a great experience with to recommend an adult ENT who is similar. This has worked wonderfully for me. In fact, our ENT does both children and adults. I am annoyed with your doctor!

    Reply
  18. Amanda

    Okay this is going to sound odd…I have been having itchy ears for the past year. Scratch scratch scratch. I could not figure out the WHY and then I read somewhere that there is some sort of link between menopause and itchy ears. Is it much of a stretch to imagine that this is something similar? I’m looking for a link now. Typing it out seems insane. I hope I find the link :)

    Reply

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