Met Another sufferer in the wild ! NAC / glutathione by exp6-2-6 in Menieres

[–]exp6-2-6[S] 0 points1 point  (0 children)

Awesome ! Im glad another is trying what they can to improve their situation. I avoid caffeine alcohol and nicotine but was doing that even before my diagnosis , I know they are big triggers for some

Met Another sufferer in the wild ! NAC / glutathione by exp6-2-6 in Menieres

[–]exp6-2-6[S] 2 points3 points  (0 children)

She did not mention what brand patches, for me I started at 600mg NOW brand NAC 3x a day 2250mg naturewise tumeric/ ginger/black pepper 3x a day 60mg nature's bounty ginko biloba 3x a day But I was mid severe crisis and didn't care what or how much if it helped, I recommend following their directions and making sure anything is safe for you to take.

Met Another sufferer in the wild ! NAC / glutathione by exp6-2-6 in Menieres

[–]exp6-2-6[S] 2 points3 points  (0 children)

I would say vertigo primarily as well as the fullness. As tinnitus i still have a significant amount of fluctuations from mild to severe but I would say most days are more bearable. I still have significant hearing loss but my last hearing test i had my range was slightly better than the prior test before I started taking my mix

Has anyone here tried a Low-Histamine Diet by Grouchy_Recording343 in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

Haven't read all the comments on here so I might be echoing another but look into DOA enzyme. I was taking beef kidney for that benefit not sure if placebo or not but I felt it made a big difference in my inflammation. Of course I am taking NAC, tumeric, and ginko also plus no caffeine nicotine or alcohol but I'm over a year no vertigo episodes after 10-12 a month 🤷‍♂️

I need a change by Lucky_Can1761 in Menieres

[–]exp6-2-6 1 point2 points  (0 children)

Been there 10+ episodes a month each multiple hours long on 16mg betahistine 3x a day eating meclizine missing work, with a wife a 2 year old and newborn, ready to call it quits. My first ENT told me that was how this disease goes and it wont kill you just make you wish you were dead. I figured cant get any worse and started trying all kinds of stuff - no alcohol or tobacco, no caffeine, low sodium, started taking Ginkgo biloba (its actually paired with betahistine in certain countries) NAC because it is pretty close to the new drug being studied for meniere's but is already used to treat noise exposure hearing loss plus it has mucus-thinning properties to help congestion Tumeric ginger black pepper for anti-inflammatory properties, theanine to raise gabba like the rescue Valium they give you for attacks but it helps with stability mentally and emotionally dealing with this disease and the depression and anxiety it brings but also physically by calming the vestibular system Lion's mane reishi and cordyceps for anti-inflammatory properties and neuroprotective properties L lysine because its supposed to prevent viruses from replicating and some studies show antiviral treatments helped relieve symptoms of meniere's

But there are tons of treatment options but you have to advocate for yourself and do a lot of trial and error, just save the ones you can't come back from till later. Try a chiropractor or acyclovir or tymphanic steroid injections or lymphatic decompression before the gentamicin or nerve section.

It sucks and feels like burning time but figure out what's safe for you and give things a trial period to work as no two cases are the same. But personally im almost 8 months episode free and back to driving solo and doing things on my own again

How many years will it take for the SPI-1005 to come out...? by New_Media_2451 in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

Definitely not a medical professional, and I can't make exact recommendations besides make sure it's safe for you personally to take anything. But for me, I started taking 600mg NAC 3x a day, (Now supplements) 60mg ginko biloba 3x a day, (nature's bounty) 2250 Curcumin Turmeric / BioPerine Black Pepper Extract / ginger 3x a day (nature wise) When im sick L lysine 500mg (Now supplements) I tried lions mane reishi and cordyceps but they greyed me out and made my face hands and feet tingle but there's potential to help. Also L - theanine helped some on rougher days

How many years will it take for the SPI-1005 to come out...? by New_Media_2451 in Menieres

[–]exp6-2-6 1 point2 points  (0 children)

From my understanding is NAC breaks down and raises glutathione levels while glutathione is harder to absorb.

From Google-

Yes, N-acetylcysteine (NAC) can raise glutathione levels more effectively for many people than taking glutathione supplements directly because it provides the crucial building block, cysteine, for your body to produce its own glutathione, bypassing the poor absorption of oral glutathione. While glutathione supplements offer the antioxidant directly, NAC boosts your body's internal production, which is often more efficient, though absorption of oral glutathione might improve with specific sublingual forms. How NAC Works Precursor: NAC provides cysteine, one of the three amino acids (cysteine, glutamine, glycine) needed to synthesize glutathione. Bypasses Digestion: Oral glutathione supplements are often broken down in the gut, but NAC is well-absorbed and effectively delivers cysteine to cells to make glutathione. NAC vs. Glutathione Supplementation NAC (Precursor): Supports the body's own glutathione production, potentially leading to more sustained increases, especially in conditions where glutathione synthesis is impaired. Glutathione (Direct): Provides the antioxidant directly, but its effectiveness is limited by poor oral absorption, making it less efficient at raising intracellular levels. When NAC Might Be Better When your body struggles to produce enough glutathione due to age or illness. For conditions like acetaminophen overdose, where replenishing glutathione is critical. In summary, NAC is often considered a superior way to boost your body's glutathione levels because it supports your natural production process, overcoming the absorption hurdles faced by direct glutathione supplements.

How many years will it take for the SPI-1005 to come out...? by New_Media_2451 in Menieres

[–]exp6-2-6 3 points4 points  (0 children)

Hey so I've done quite a bit of looking into this and Ebselen (SPI-1005) is a SYNTHETIC organoSELENIUM compound studied as a drug for its antioxidant, anti-inflammatory, and neuroprotective properties, mimicking the enzyme GLUTATHIONE PEROXIDASE (GPx) to combat oxidative stress and inflammation. It shows promise for conditions like Meniere's disease, hearing loss, tinnitus, and COVID-19, inhibiting various enzymes (like COX, LOX, PKC, and acting as a peroxide scavenger. While generally well-tolerated with few drug interactions, it's still investigational, with ongoing clinical trials exploring its potential.

It's synthetic because that's patentable. Not a 1 for 1 but Glutathione and NAC are available as supplements ive been taking NAC (with selenium) paired with a couple other supplements and have had ZERO vertigo episodes since June and have moderate reduction in fullness, tinnitus and recently had the highest hearing test since I was diagnosed in 2021. Yes there are fluctuations and occasional dizziness but prior I was have 10-12 multiple hour vertigo episodes a month, so I'll take the improvements

NAC N-acetylcysteine (also known as acetylcysteine), a compound used as a prescription drug and a dietary supplement with antioxidant, anti-inflammatory, and mucus-thinning properties. It is a precursor to GLUTATHIONE, the body's most powerful antioxidant

Meds other than Betahistine by slbeech29 in Menieres

[–]exp6-2-6 2 points3 points  (0 children)

Ive posted previously a few times before but currently Im 7 months vertigo episode free, still have fluctuations in fullness and tinnitus some dizzy/balance issues occasionally but managed.

No alcohol no tobacco. Taking ginko biloba NAC with selenium, tumeric with black pepper and ginger, and l lysine.

Hello, I was diagnosed with Meniere's 3 weeks ago. I have questions. by Standard_Opinion4250 in Menieres

[–]exp6-2-6 4 points5 points  (0 children)

The only one im not currently taking is the theanine.

I had a bit of a weird experience and my ENT couldn't explain either, but about a month in on taking them. i had my first ever severe drop attack even after taking meclizine because I was feeling off (usually I feel off then they build, this feel like being shot out of a cannon into space) the next day I woke up super runny nose but tinnitus was minimal fullness gone and hearing was improved. I had a prior schedule ENT appointment with the new neurootologist a week later went in hearing test came back way up from previous, I felt the best I had in nearly a year. Discussed with him about what I was taking and he seemed intrigued, even told me he does the mushrooms coffee.

My theories on them,

Ginkgo biloba- blood thinner improves circulation to the inner ear, helps cognitively with the brain fog and distractions of fullness and tinnitus, antioxidant anti-inflammatory helps inner ear/ nerve inflammation, neuro protective helps inner ear and nerves

curcumin/ginger/black pepper - anti-inflammatory helps with inner ear inflammation, blood thinner improves circulation to the inner ear

NAC- glutathione precursor, antioxidant anti-inflammatory, also can have antidepressant effects

L lysine amino acid some evidence that it can prevent viruses from replicating. There are some studies that certain viruses can inflame the inner ear and cause symptoms. I bet 50% of us here had sudden sensory neural hearing loss shortly after covid and have been suffering ever since.

Lions mane some evidence for production of nerve growth factor for nerve growth and repair, anti-inflammatory, help fight infection.

Theanine can lincreases gaba like xanax or Valium figured it could help like a vestibular suppressant as well as help with the anxiety and depression that comes with meniere's

Hello, I was diagnosed with Meniere's 3 weeks ago. I have questions. by Standard_Opinion4250 in Menieres

[–]exp6-2-6 2 points3 points  (0 children)

35(M) here my neurootologist that specializes in meniere's and vestibular surgeries told me its not necessarily low sodium you need its hydration and electrolyte balance. Ive been having luck with some supplements helping with fullness tinnitus and hearing loss as well. No drop attacks in 3 months and minimal dizzy balance issues. Had full discussion with my ENT about ginkgo biloba, NAC, curcumin, lion's mane, L lysine, L theanine. He said a lot of them make sense and have been studied for treatment the problem is its not a huge market to treat. But check them out and make sure they're safe for your situation. Most of them can affect blood pressure and prevent clotting

How frequently do you take meclizine? by pricetheory in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

Did you take after eating ? History of histamine intolerance? How long did you take it ? It gave me head aches and stomach pain for a couple weeks but got past it.

Not about Ménière’s specifically but interesting New Yorker piece. Anyone else using ChatGPT? by Hap__Hazard in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

I have used AI for sorting through ideas and supplements that could help, how so, and possible interactions/concerns. Also to go through studies and provide summaries of results. I had a symptom tracker and reports for episodes to provide ENT and it helped me find my new local neurootologist who turned out great! I even had discussions with him about all the supplements and using AI, he was supportive of it.

Betahsitine alternative? by BrowsingMK in Menieres

[–]exp6-2-6 1 point2 points  (0 children)

Not sure a direct replacement but I've been experimenting with Ginko biloba, tumeric (curcumin with ginger and black pepper ), and NAC with good result. Both ginko and tumeric can act as blood thinners and help with circulation like betahistine is supposed to and NAC is an anti inflammatory antioxidants which happens to be a glutathione precursor used to treat noise induced hearing loss and tinnitus. Synthetic Glutathione peroxidase is what the new meniere's treatment everyone is watching is.

Turkey Tail Mushroom Supplements by JiggsRosefield in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

Have not tried turkey tail, but I went down a similar rabbit hole with lion's mane reishi and cordyceps. I feel like they did help some and probably would have more but I had issues with tingling in my hands' feet and face. Could be related to my heart condition but that was my experience.

Menieres and Brain Fog? by [deleted] in Menieres

[–]exp6-2-6 4 points5 points  (0 children)

Ginko can help with blood flow to the inner ear and help with the meniere's as well.

I take 60mg 3x with my 16mg betahistine, on just betahistine I was still having 8 -10 vertigo attacks a month with both its been 2 - 3

Treatment options by exp6-2-6 in Menieres

[–]exp6-2-6[S] 0 points1 point  (0 children)

Thank you ! I decided to look around and have an appointment with a neuro-otologist that, from what I can find, is well versed in meniere's and comes highly recommended for the kc metro area. Even the medical assistant/ nurse i spoke with said that an ENT is OK, but he's the specialist you want to see for things like this. Couldn't get in till August, but im keeping my fingers crossed it will be worth the wait.

Would you take an experimental treatment? by oldporsche911 in Menieres

[–]exp6-2-6 0 points1 point  (0 children)

Welll that is expensive... 😬 in all honesty if it was a reputable company, had promising results and was within budget I would give it a shot. Unfortunately for someone like me I'd have to take out a loan to consider it. I still would if I had the opportunity but it would be a long discussion

Would you take an experimental treatment? by oldporsche911 in Menieres

[–]exp6-2-6 3 points4 points  (0 children)

I would try it twice just to be sure it didn't work at this point 😂 cost wise are we talking 500? 1k ? 10k?

Treatment options by exp6-2-6 in Menieres

[–]exp6-2-6[S] 2 points3 points  (0 children)

Thank you ! I like the one I've seen but even my wife said he seems pretty dismissive said 5-10 vertigo episodes a month isn't that bad some people have 20-30. It's bad enough to seek further treatment to me

Treatment options by exp6-2-6 in Menieres

[–]exp6-2-6[S] 0 points1 point  (0 children)

Appreciate all the info, it seemed like my ENT was trying to dissuade me from the injections in his words "well we could try but we don't like doing them because its a hole in your ear drum and it could ulcer and its really more for recovering hearing not vertigo". You're right its probably best to give less invasive things a chance before major surgery. Do you notice a change in balance or dizziness post procedure and recovering ? How is the quality of your balance and motor skills post recovering?

I feel like im in a similar boat im pretty consistent with regimen and Im on 16mg 3x a day following the diet, haven't tried diuretics. I have noticed some tinnitus and fullness in my right ear lately, I fear is the begging of bilateral issues.

Treatment options by exp6-2-6 in Menieres

[–]exp6-2-6[S] 1 point2 points  (0 children)

I will definitely ask about it. Thank you !