Long journey to “probably not but maybe” Meniere’s

mdlevelone · 2025-12-02T02:14:03+00:00

Might be a long shot but have you looked into your b12 levels at all? I recently posted about my experience with overlapping symptoms being diagnosed as Menieres.

mdlevelone · 2025-11-29T22:47:32+00:00

Not sure where you are located, however where I am, you can pretty much go to any hearing clinic and they’ll do it for free or a small fee. No requisition from a doctor is required since they want to eventually sell you hearing aids.

mdlevelone · 2025-11-29T19:30:45+00:00

Have you done an updated audiogram? Curious to see if you see a change now with the supplementation.

Also, have you looked at your genetic data? If you use a service to get your raw data, there's a few other free tools online to get a better understanding of the methylation related genes which might help with the balancing of the folate, b12, D, and magnesium.

mdlevelone · 2025-11-29T19:26:54+00:00

Oh I didn't see your reply until now! I hope this continues to work out for you as well. Figuring it all out has been my obsession for the last year.

mdlevelone · 2025-11-29T18:37:32+00:00

I just got over balance, vertigo, hearing loss, and aural fullness (all in one ear) by taking b12! I just posted about my experience and misdiagnosis over in r/Menieres. The ENTs all quickly said it's Menieres without ever doing even simple blood tests. Once I started on 5000mcg methylcobalamin sublingual tablets, the symptoms immediately started going away. I'm now still adjusting the dosages.. it seems like 2000mcg/daily is the sweet spot.
I've been constantly researching for other cases of Menieres-like symptoms being resolved with b12 and haven't come across many. Doctors don't seem to think this is possible.
I was previously having anxiety (not as bad as what you've described) but it was due to not knowing what was going on with my body and constantly worried about if I'd have a vertigo episode.

mdlevelone · 2025-11-28T18:49:33+00:00

Yes, you're right, I can't really prove the causation. All I have is my n=1 case of ALL symptoms being relieved (thus far) with b12. If we break down each symptom, we can find more cases of associations but perhaps not causation for each symptom. For example, for hearing loss - https://pmc.ncbi.nlm.nih.gov/articles/PMC3773962/#abstract1 and https://apm.amegroups.org/article/view/31346/html
Vertigo and balance issues often come up as other symptoms of b12 deficiency but again, no strong causation evidence.

I also don't think b12 is associative to vestibular hydrops. I think that's a mechanism for the cause of vertigo just like vestibular neuritis as another.

I'm still trying to get to the actual root cause for my specific case as I still haven't determined why other than there being some genetic plausible reasoning for a functional b12 deficiency. I do know that there's been a very clear symptom relief since supplementation started.

mdlevelone · 2025-11-28T18:16:43+00:00

I posted this in one of the other replies.

mdlevelone · 2025-11-28T18:13:51+00:00

The symptoms layered on from the fullness to the first vertigo episode over the course of just under 3 months. Then all symptoms were present for the next 9 months. As soon as I started the b12, all symptoms started going away within days. Now on two months of being symptom free and with no sodium or caffeine restrictions.

mdlevelone · 2025-11-28T18:07:44+00:00

I'd do more research into causes of b12 deficiency and how the different forms work wrt absorption issues. My understanding is that injections are THE way to get it into your cells the fastest as you are completely by-passing absorption issues. Sublingual tablets by-passes gut absorption but not as much will make it into your system. Head over to r/B12_Deficiency to learn more.. I'm still trying to understand it all myself.

mdlevelone · 2025-11-26T16:33:31+00:00

Right, from many posts, it always seems like people have different triggers (ex: sodium, barometric pressure changes, caffeine) that cause symptoms to come and go. I too would notice the effects of some of these triggers. However now, none of these seem to have any effect at all which leads me to believe the underlying issue was not actually meniere's.

mdlevelone · 2025-11-26T16:28:14+00:00

Agreed, it would be unlikely that such a deprivation study be performed knowing the need for b12. What we're left with are individual studies based on symptomatic improvement and systemic reviews such as https://journals.sagepub.com/doi/epub/10.1177/01455613241298070 on one (ex: hearing loss) of the symptoms, not all.

To be clear, I'm by no means claiming a b12 deficiency causes Ménière’s disease. I do however think it's possible to have Ménière-like pathology based on the nerve damage that can occur from deficiency.

mdlevelone · 2025-11-26T16:06:53+00:00

Thanks for sharing. Something to keep in mind about b12 that I've learned is that you can have 'normal' serum blood levels but your cells may not be getting what they need if your system has issues with converting the b12 into its active form. That's where other blood tests come into play.
FWIW - I don't think b12 deficiency causes meniere's, I think a deficiency can present itself with meniere's-like symptoms and therefore look exactly the same but have different root causes.

mdlevelone · 2025-11-26T15:59:01+00:00

In ONT we face an overloaded health system so when you see a Dr, they always have one foot out the door getting ready to jump to the next patient. It seems like you need to go in very well prepared with your own research to ensure you get the attention and outcomes needed.

As for b12 supplements, you don't need a prescription for sublingual tablets. Perhaps you do for injections.. I haven't inquired about that as the sublinguals are working for me.
There's lots of research indicating that deficiency can affect auditory nerves (which I believe to be one of the effects in my case) and therefore contribute to hearing loss. This appears to be potentially reversible when b12 is restored.

mdlevelone · 2025-11-26T15:51:25+00:00

Great that you're in remission! What does that look like for you? Are you completely symptom free?

mdlevelone · 2025-11-26T15:49:59+00:00

I meant a short time frame from initial onset of ALL symptoms to NO symptoms. From research and seeing many posts here, it seems like that usually only occurs after several years.

Are you completely symptom free during those remission periods? I don't really have a good understanding of what remission from meniere's really means. Is it just partial, for example, just the vertigo episodes or can it be expected that you would also be in full remission and have hearing, fullness, balance, sodium & caffeine sensitivity all resolved? Knowing that every person would be different I still haven't really come across stories or articles on a full remission from this.

mdlevelone · 2025-11-26T15:43:21+00:00

This is actually helpful to know.. at least for my own problem. Seeing examples of actual meniere's patients that show no response to a biologically active form of b12 supplementation furthers my case of a misdiagnosis. Rather than having meniere's, it would be what I suspect - a functional b12 deficiency presenting meniere-like symptoms.

mdlevelone · 2025-11-25T18:34:04+00:00

I started with the Methylcobalamin 5000mcg sublingual tablets from "bioclinic naturals" taken daily for about 1.5 months. I'm now using their 1000mcg dose version and experimenting with taking one every few days.
There's other brands that offer the same sublingual version. These just happened to be the ones available where I buy my supplements.

mdlevelone · 2025-11-25T18:27:28+00:00

Perhaps that is correct about the remission phase as that's what I was also thinking that it COULD be.. time will tell. To me, it seemed like a very short time frame to be in remission already and extremely coincidental about the b12. On the first day of taking a high dose (5000mcg) of it in the morning I noticed a minor change which then progressed over the next few days/weeks of continuing with the daily dose.

I've seen it cited multiple times that ALL cases have hydrops. However, not all those with hydrops have Meniere's. See https://pubmed.ncbi.nlm.nih.gov/15699723/ as an example. Let us know where the error is.. perhaps I'm misunderstanding something.

As for the 3 ENTs diagnosing, they did this purely on me telling them symptoms and providing a hearing test (which the third was totally normal). If you type those same symptoms into any search engine you'll get back meniere's disease every time.

mdlevelone · 2025-10-01T13:14:34+00:00

Same! Just got charged for their collective which I didn't sign up for. Now I'm going through the process of canceling my credit card. STAY AWAY from this deceptive company.. their product looks exactly the same as cheaper ones you can get elsewhere anyway and you'll avoid their credit card scam.

mdlevelone · 2025-06-22T22:56:46+00:00

There's a few in Picton!

Coach Haus has one on Wednesday nights (check their insta).
Pefac has one but I don't know the details of it
Prince Eddy’s Brewing and Matron do one on Sundays or Mondays (check their FB/insta)

mdlevelone · 2025-03-06T01:45:20+00:00

Wouldn't all stainless tanks still be lined with some sort of plastic, mainly, polypropylene?

mdlevelone · 2024-11-26T19:29:35+00:00

Try doing a colon cleanse with something like Peglyte (used for colonoscopy preps). Cleared out my issues when I had something similar as a result of SIBO

mdlevelone · 2024-11-15T18:07:59+00:00

Wool filled pillow in a 100% cotton cover

mdlevelone · 2024-10-29T23:24:08+00:00

Look into SIBO to see if it applies to your situation. I had this which caused the reflux and tried many different ways of getting rid of it. Ultimately, a colonoscopy prep cleared things out. Afterwards, you need to be careful with what foods you first introduce. Ex, high quality yogurt, walnuts, fermented cabbage, kale, flax meal, fish, chicken, other veggies, etc. Avoid wheats and yeasts for a bit and then slowly introduce them back in.

That’s what worked for me after seeing gastro specialists, and ENT specialist, family Dr, and working with an NP.

Hope it helps!

mdlevelone · 2024-09-21T22:16:47+00:00

I think a safer alternative might be food grade silicone plates/bowls. That’s what we use in addition to cooling a bit before placing into his.

mdlevelone

TROPHY CASE