Quick update. 4 weeks into JOH (I didn't ease into, I started will all supplements at the recommended dosages. Only modification was to decrease the dosage of Vitamin C to 500mg) and have noticed significant improvements. 2-3 weeks in, I noticed a shift. There actually was relief! The tinnitus has decreased in volume and frequency, although based on reports from John, Tinnitus will stick around the longest. (My ENT believes I will always have Tinnitus, quite stubborn on that belief). Ear fullness has decreased from 10x a day, to 1x, or 2x daily, for shorter periods, and seems to happen when my blood sugar is the lowest, right before meal times. Daily disorientation, dizzy spells, and brain fog have decreased. Although I have a Meniere's diagnosis from my ENT, he still believes that Vestibular Migraines shouldn't be ruled out, and to act AS IF my symptoms are coming from both issues. He recommended all of the lifestyle changes that assist with vestibular migraines, so I do that too. I've added Vitamin B1 (100 mg, 1x daily), and "Dr. Berg's Vitamin D3, K2, Magnesium w/ MCT Oil. At week 2, my symptoms increased for 1 day, rather harshly, and then faded off. I also had some chocolate cake the day before so that could have done it hahaha. I'm mentally preparing for the full force of the virus to return as others have experienced. I'm hoping since I am 37 (kind of on the younger side for this diseases) and have addressed my Meniere's symptoms as soon as they appeared, I will not have a big flare up of the virus. Fingers crossed. My ENT will not prescribe anti-virals. I've sent him some articles supporting the theory, but he must be too busy, or he doesn't care. It's an ENT through Kaiser. Link for Dr. Berg's pill: John, do you recommend taking an additional Magnesium supplement on top of the 25mg that is included in Dr Berg's pill? I have a Magnesium 250 mg pill. A google search comes back with 350-420 mg per day for my age.
Thanks for posting the details of how you are attacking your symptoms. Everything is trending in the right direction; merely persist. But, yes, the taking of 300 to 400mg of magnesium each day will help support the immune support functions of vitamin D-3. Your 250mg tablet should be enough, as it builds upon the magnesium already in your diet. Keep us posted on your progress. --John of Ohio
I have read in @John of Ohio's testimonials people saying their attacks, when they do happen, are of much reduced severity. Does this progression sound familiar to anyone: I started the regimen around June 1. Two and a half weeks later, I experienced vertigo for the first time, which lasted under two hours for two consecutive days before not returning. I'm wondering if this is the "virus activated by the lysine and going into panic mode" thing. I have stopped my diuretic for a couple weeks to see if it is making a difference. Around the same time as stopping it, perhaps a few days before, I have a very minor feeling of fullness in the better of my two ears, and it's been that way for about 2-3 weeks, but nothing like what a normal attack feels like. Does anyone who is having luck with the regimen experience anything resembling this? I cannot quite tell if the "minor return" of the fullness is the discontinuance of the diuretic or the regimen doing its job.
How did you get a Meniere's diagnosis without the vertigo? My ENT said that is a requirement. I don't mean to dismiss or invalidate your experience, I hope you know that. Do you know for sure its MD? and not vestibular migraines? You can absolutely have ear fullness, tinnitus, headaches, visual disturbances, dizziness, disorientation, and brain fog from vestibular migraines. Meniere's is a pretty specific 4 sxs, vertigo, hearing loss, tinnitus ,and inner ear fullness. Can you describe the vertigo you experienced? Regarding the diuretics', I'm not a medical professional, but I would continue your other meds for as long as possible, until your symptoms go away. could take many months IF your issue is MD from a viral infection.
No, you're not dismissing/invalidating anything: I have not to date received a conclusive Meniere's diagnosis, but have been mentally preparing as though a diagnosis is coming. We are still undergoing other tests for various causes. From my standpoint, I began the regimen because I didn't see any health downsides to it. But bilateral Meniere's is still one of my ENT's two main suspicions. I'm still trying to work out if there is a autoimmune (rheumatological) diagnosis or if it is something else. You're correct in that the vertigo is a requirement, and its later onset has muddied the search for a definitive diagnosis. The thing is, it DID come, eventually. The vertigo I experienced was the room-spinning type. No vomiting, but there was nausea. No drop-attacks, I was sitting comfortably when it happened and was able to walk around by holding onto things. It abated after two hours. Day two, a course of Bonine took it out quickly, but left me uselessly tired for the rest of the day.
Oh I see, thank you for all of that. According to my ENT, a Meniere's diagnosis is difficult to diagnosis and he rarely does it because of all of the contributing factors. He said the last time he gave the diagnosis was 10 years prior, the patient was over 65, and loss hearing completely in one ear. That is wild how your vertigo came on. Vertigo can also come from vestibular migraines, I'm learning. Another thing my ENT reported was that if you have Meniere's the hearing lost is persistent, and decrease over time without treatment. I'm wondering if you are getting some of the same tests I did such as hearing, MRI, balance/vision testing, blood testing, and neurological testing to rule out other disorders. I sincerely hope in your case that it's NOT Meniere's, because VM's can be treated much easier with lifestyle changes, and worst case you would need medication. May I ask your age? Feel free to message me.
That is the thing I was trying to determine. I started the diuretic right as all symptoms were going away, so it is near-impossible to attribute any improvement directly to it other than to see if symptoms return as a consequence of it not being there. Symptoms have been 95% gone for over a month, which is why I wanted to see if the diuretic was doing anything. I read the Cochrane review on diuretics for Meniere's and they felt that the evidence was of poor quality or low confidence, my own empiricism notwithstanding. But will report if there is a change when I go back on them.
Hey all and Jon, I've had full blown meniere's symptons for the last month so just started a version of the JOH regimen 5 days ago - 3000mg l-lysine, lemon bioflavonoid, ginko biloba, beta glucan 1,3 and 1,6 (purchased because I was looking at an older version of the JOH regime). and just starting MSM today. Within the first 2 days, I noticed great results! The vibrating pulsating pressure affecting my left ear was completely gone, the ringing was much quieter, and for a night I felt complete relief in my right ear (which the Meniere's has spread to within the last month). In general I felt a lot of "activity" happening in my ears. It's strange to describe but in my left more serious ear, it almost felt like dead cells were being awakened! I also had the sensation of fluid draining down my throat. However on the 3rd day I was experiencing stomach cramps and nausea and it became difficult for me to eat. After researching side effects, I decided to reduce my l-lysine intake to 2000mg. On day 3 and 4, there was no noticeable exciting "activity" in my ears and now on day 5, there is increased fullness and pressure, and I'm still pretty nauseated the whole day. My questions for Jon or anyone who can relate are - 1. Has anyone experienced nausea and loss of appetite from 3000mg of l-lysine? And did taking down the the dosage help? Or do we think the nausea is just a by-product of my Meniere's symnptoms? 2. Do we think that 2000mg is enough to take for Meniere's? Or should I just suck it up and stick with the 3000mg for a while? I just came off a really bad experience with prednisone and valacyclivor that was prescribed by my ENT so realize I might be a sensitive person to medications.. Interesting side note, my "favorite" of the supplments I'm taking is the Bet Glucan 1,3 and 1,6. The first few times I took it, I felt an INSTANT relief in my ear discomfort. I searched this forum for beta glucan discussions but didn't find much. If anyone has any experience with beta glucans would love to hear your story. Appreciate your time, thank you! -Lisa
If 3000mg of lysine is causing nausea or other gastrointestinal discomforts, try to spread out the doses over the day; 1000mg 3x a day, but with long periods between each dose. Try 1000mg in the morning, at least 20 minutes before breakfast. Then, a second 1000mg in mid-afternoon, at least 2hrs after the food at lunch. Finally, a final 1000mg just before going to bed, at least 2 hours after eating the evening meal. As difficult as it is (getting the timings right), try that routine for several days and see if that resolves the problem. If not, drop back to two 1000mg dosings, one in the morning and the other in the evening. Or, try cutting back on the lemon bioflavonoid, to see if that caused the nausea. My most recent version of the regimen does not use lemon bioflavonoid (as it can be difficult to procure). --John of Ohio
Betahistine has been a lifesaver for me. I order in advance because it takes a long time to ship from CAN to US.
Yes. The supplement regimen is the purpose of this forum. Please see the original post by JOH. Let me know if you need help finding it. It will be on page 1 of this forum. There is a PDF you can download. It will take some work to prepare for this regimen but I highly recommend it. I also encourage you to spend time reading through this entire thread. It will be beneficial for you. I take Betahistine 16 mg (2x 8mg pills daily) as well, along with a diuretic.
Any suggestions on how to get Betahistine in the US? I just tried one of those online doctor services (plush care) and they said Betahistine isn't on their list of medications they're able to prescribe in the US. I also tried ordering online from Canada but it requires a prescription as well...
Hi Paul, No, I don't. Unfortunately, I don't have the money to buy all the supplements I'd like so I just take the lysine , vitamin C and D etc.
To be honest, I've been taking supplements for over one and half years and I don't have any real evidence that they have helped. Saying that though, even if they help a even a little bit then I'll take that.. The only thing that has noticeably helped has been the Gentamicin injection (and to a lesser degree, steroid injections) I had just over two weeks ago. I haven't had a vertigo attack since I had the injection. If you need relief from vertigo then I can definitely recommend Gentamicin. The only problem is, your ENT will have you try everything else before even considering it (as it is destructive). Read this post if you're thinking about it and would like to know more: Gentamicin: A Complete Experience | Discussion | Meniere's Talk forums (menieres.org)
