JOH (John of Ohio) Regimen for Meniere's Disease details

Hi Jessica,

Yes, I am still taking Betahistine 8mg 3 times a day (after food) and have had no problems at all. I still have some tinnitus and my hearing is still somewhat impaired but it is much better than it was. The vertigo attacks and general dizziness have gone though which is great because they are the things that are hard to live with.

Yes, I had sensitivity to noise when I was first diagnosed with Meniere's. It usually accompanied a feeling of fullness and poor hearing and soon after, vertigo attacks etc. Cars going by, putting dishes away, tv all sounded loud and sometimes very tinny and weird. Now I'm taking the Betahistine (and Lysine etc.) the sensitivity to noise has all but disappeared.

Along with the Betahistine (and Lysine - 3000mg a day, vitamin C, MSM, vitamin D, vitamin B complex, and vitamin E), I have also been quite strict with my diet which I think may be helping. It's a low salt and low sugar diet which I eat at pretty much the same time everyday, with pretty much the same food everyday (which I have read may help).

I also avoid dairy, wheat, foods containing high amounts of arginine (such as nuts and seeds), and chocolate, and cake etc. You may be fine with these but unfortunately they make my symptoms worse so I've cut them out too.

Since taking the Betahistine, I'm definitely much better. I think it's definitely worth a go.

If you have any more questions I'm happy to answer them,

All the best,

Mike.

 

Hi Mike wow such a fantastic reply
So sorry for delay in response. I’m so grateful can’t believe I’ve suffered so long with no advice from nhs. My doctors have given me no advice apart from the Serc 16. I’ve bought lysine last week and it’s better already. The sensitivity is the worst part for me.
I’ve decided to persist with hearing aid as at first I found it too loud but doc said she couldn’t turn it down anymore. Over years I’ve definitely developed a fear of noise causing a lot of tension so simply telling myself noise is ok don’t be afraid helps. I say it a lot out loud. Absolutely no coffee and salt is worst thing. Oh and got the b12 too. It’s so nice not to feel alone as people around just don’t get it when I’m so jumpy and almost completely deaf in right ear. Had horrendous vertigo attack in middle of night a few weeks ago. It’s so frightening I hope it never happens again. The vomitting was unbelievable. I will cut down on those other things too. I found acupuncture helped me too. So a massive thank you tonyounfor taking time to write to me

 

18 years it’s taken me to get this advice! Let’s keep fingers crossed for more research tonfind cure

 

What is the regiment of vitamins? I’m very interested. I have been suffering for 6 years and am completely miserable. Thanks in advance. I also have pots so the low sodium diet and diuretic I have been unable to do.

 

Hi Jessica,

You're welcome, it's no problem at all. Meniere's is absolutely no joke. I'm always happy to give any tips that have worked for me, I really do hope it can help others to find some kind of relief too. The NHS only provide some help. For me it's all about trying out all the things that other sufferers have said have helped them here and on other forums. I would have been completely in the dark without the internet and access to good advice from other sufferers.

Also, try cutting out certain food and drink to see what can help you. For me, certain foods trigger symptoms almost immediately (milk, chocolate, high in sugar fruits, bacon etc). Now I tend to keep it just to the things I know won't trigger symptoms (chicken, mince, salmon (not smoked) steaks, rice, (low in arginine, high in lysine) vegetables). It's a bland diet but it's worth it to be rid of the vertigo.

Do try out eating similar food at the same time everyday too. I have read here that this helps: Dietary-Considerations-with-Secondary-Endolymphatic-Hydrops-Menieres-Disease-Vestibular-Migraine.pdf

Jillian: For the vitamins, everyday with or after food, I take vitamin C 1000mg (low acid, slow release), vitamin B complex, vitamin E 400iu, 260mg (must be D-Alpha), MSM 1000mg, and Vitamin D3 1000iu, 25ug. Also try out the Lysine 1000mg (3 times a day) too as recommended by John of Ohio. JOH (John of Ohio) Regimen for Meniere's Disease details | Meniere's Talk forums (menieres.org)

Hope you find some relief soon,

Mike.

 

Hi John,
I have documented right side Meniere's with tinnitus, and hearing loss, a "classic case" said my ENT in 2016.
During my first episode I fell, couldn't get up, had severe rotational vertigo, and then involuntary vomiting till my stomach ached. At that moment age 58 I thought my life was coming to an end. After 2 years of living with it, trying everything except surgery the vertigo and vomiting slowly waned, but the ear fullness, thick brain fog, screaming tinnitus, and constant dizziness remained. It sucked.
I started John's regimen 4 weeks ago. After 4 days taking L Lysine 3 times a day, vinpocetine, MSM, the fullness started to decrease, along with the brain fog. During the 4th week the tinnitus has decreased about 40%.
Nothing before this has worked for me, and today I am feeling so much sharper, brain wise and muscle wise. It's a huge improvement and I am kinda freaked out in a positive way. I have been trouble shooting electronics/ mechanical systems/ and software for 30+ years and I had to slow way down because of the symptoms, but now I think I can restart and build my business again.
I will get back and report at the 6-month point.
Thanks John,
TOM

 

Hi, I recently got diagnosed with menieres in my left ear. I have been battling this for the better part of the year but only recently was given a diagnosis because they did not know if it was vestibular migraines or menieres but after losing some low-frequency hearing in my left ear, it has been diagnosed as menieres. I have severe aural fullness, tinnitus, brain fog, and a recurrent whooshing sound. Life has been miserable. I started the JOH treatment a week ago, along with a diuretic and betahistine. I am also on an SSRI for my symptoms. Nothing so far has seemed to help and almost has made it worse. I know its only been a week but I am 22 years old and really seeking some relief. How long does it take for the JOH treatment to usually kick in?

 

Thank you,
How much of the lemon bioflavonoids should I be taking daily? What is the max? Also can anyone recommend what they do for screaming tinnitus

 

Hey JOH. Thank you for your regimen. I started it earlier this year and it seemed to stop all symptoms dead - I've suffered single-sided for about four years now.
It got to the point in April that I thought I'd come off the regimen. Bad move. Deafness and dizzy spells came back with a vengeance.
I went back on the regimen, but have never fully captured that sweet initial symptoms-free time.
We have a newborn in the house now and I am getting very little sleep - my symptoms have been very bad, so I think maybe sleep is vital for recovery.
As a side note, I recently switched to a different brance of Lysine and I think this may have impacted my recovery negatively. I've switched back to the brand I had before to see if it makes a difference.
On top of this I am also looking at Mary of the West's diet - cutting eggs, dairy and gluten first to see what, if any, difference this makes.
Also, does anyone have this? Touching the side of my head or near my ear seems to trigger a response inside my ear making the tinnitus turn up in volume. It's almost as if a nerve inside the ear is sensitive to touch.

 

Hi all. JOH, I just want to thank you for posting your regimen. I have been on it for a little over 3 months with significant improvement. I was in my 20's when I first started having symptoms. I sought treatment for a major sumac reaction and happened to mention dizziness I had been having. The doctor recommended a neuro evaluation but I did not follow through because I went years without any episodes. I had several episodes in my 30's and 40's but it seemed to be seasonal so the doctors would prescribe allergy meds and send me on my way. After turning 50 it really ramped up. The tinnitus and vertigo increased significantly. The attacks were violent and lasted 6-8 hours at least once per week. I finally had an ENT evaluation in 2017. I was diagnosed and told to take a diuretic and avoid salt and caffeine. That actually worked for 2 years before I started having dizziness again. It was a little different this time as the dizziness was almost daily but spinning and vomiting only every few months. The symptoms started increasing again in January 2022 causing me to miss work and stop travel completely. I remembered in earlier research coming across your regimen so I found it again and ordered everything. I made an appointment with my doctor to go over it with her. She was fine with it, except the Vinpocetine. She was not familiar with it so we decided I would try everything else and discuss that later, if necessary. I started it and the first few weeks were still rough. During the 4th week I started noticing less dizziness, ear fullness and no "violent attacks" occurred. Now, a few months out, the tinnitus is still loud but I can deal with that. I have lost probably 75-80% hearing in my left ear. I have no dizziness, vertigo or nausea. I am still sensitive to loud noises like when my grandson screams or the dog barks excessively but they don't cause me to be in bed like they did before. Those high pitched sounds are something else. Overall, I pretty much have my life back. I have not tried traveling long distances but plan to in the fall if I still feel this good. Thanks again.

 

Hi John,
I was diagnosed with Meniere in May 2022 based on the hearing loss of low frequency, Tintinus and mild headache sometimes . My hearing of low frequency was returned in May, but was gone in June due to Covid. In early July, I found out JOH regime and started the regime right away. My Tintinus was much quieter After taking lemon Bioflavonoids for a few days. I also took pynogenol and Tumeric. Last week, my hearing is returned and my Tintinus is unnoticeable. I would like to ask what is the maintenance supplements I should take now. With so many supplements, I feel my stomach does not feel Good. Currently, I have also implemented low salt, low auger, gluten free diet. Really appreciate your regime and It is life saver. Your research on Meniere helps me tremendously . I need your suggestion on the next step

 

I've been suffering from Meniere's in some form or another for at least the last 15 years. Before I (or my doc) knew what it really was. Over the last 3-4 years, I've had minimal symptoms. Suddenly between the end of June this year and now (August), I've had several pretty bad vertigo attacks and some massive hearing loss flareups. I've had to leave work several times and taken several doses of Prednisone for the hearing loss. Having been relatively symptom-free for years and having it come roaring back (literally) has given me an "I'll try anything" attitude. I remember reading about this a while ago, but at the time, I felt the attacks were few and far between enough to not warrant talking MORE meds. Different story now. So a couple of weeks ago, I started this regimen and have my fingers crossed it will produce some positive results.

 

Seeking some advice regarding a few things regarding regimine with additions.
1. Was on a short course of Famciclovir early this year (about 5 weeks, but lower doses) and it seemed to really help. Dr. at that time not willing to pursue further use due to not knowing what you have all learned even with my data. Went from early-April until late July with ongoing, increasing fullness almost every day (minus literally a handful of days in June and one half-day in July). Appealed to doctor and got back on full dose of Famciclovir 3x/day now for 3 full weeks. I have seen some minor improvements in hearing (about 10-15 db increase in lower and mid-range frequencies) but nothing in the higher frequencies. Fullness continues without much change (maybe a little less full). Is this typical of what others have experienced and how long have some of you had to 'stay the course' with 3 a day with the length of time I've been experiencing the acute aural fullness? More frustrating this time because things don't seem to be moving in a positive direction as quickly as earlier this year with incessant fullness and related hearing loss. I have seen minor improvement (very minor) and wondering if Famciclovir just not be working as well....or too soon to really tell. Family doctor wondering about a switch to Valacyclovir 1000 mg 3x/day for at least two months and then see. Thoughts from you fellow warriors?

2. Along with the above I have been faithfully taking Lysine 3000 mg./day for 7 months...little to no notable effect, but only taking with Sustained Release Vitamin C, Vitamin D3, Vitamin B12, Betahistine (24 mg./day), Magnesium Glycinate (400 mg) during that 7 months. In the last three weeks have begun adding Lauricidin (tapering up...thanks JonBubo for the encouragement), up to 30 mg. day of Vinpocetine; 120 mg. of Ginkgo Biloba. Just wondering how pivotal others found the addition of an additional AV like Lauricidin and the addition of Vinpocetine and Ginkgo to the miss in dealing with aural fullness? Any suggestions on how long it took to notice any notable positive impact? I know the few weeks with these additions aren't very long. Like the rest of you in dealing with these issues my patience probably isn't the strongest after so many months with this fullness.

BTW, have been doing Upper Cervical Chiropractic and acupuncture this summer with little change/improvement. I have been dealing with probable CH for about 2+ years but in a much more acute way for the past year (first year and a few months was more of a coming/going kind of issue and under no treatment during that time).

Very curious to hear from others about continuing on Famciclovir 3x/day at 500 mg. or switching to Valacyclovir 3x/day at 1000 mg. as well as others who may be dealing with such constant fullness for so long finding any relief, how long it took to notice results on JOH combined with AV's, and what specific supplements were pivotal for your improvement.

Thanks for reading and I so appreciate this forum and all the good you all try to do to be supportive of each other. It's reassuring that there really are others out there dealing with what I am. Your success stories (and willingness to share what really helped you) help provide the tiniest bit of encouragement on those days when I find myself envisioning if this misery is what it is going to be like forever into the future.

 

Thought of another quick question...I've never been on a diuretic but have inquired a number of times. For probable CH thoughts on if it is better to attempt the diuretic route or stick with the AV's (Lysine, Fami or Vala, Lauricidin) and other JOH supplements only? Just curious of the experience of others. Thanks.

 

Kurtin, terribly sorry you're still having issues. I am also probable cochlear hydrops and have experience with Famciclovir, so I am happy to weigh in.

Firstly, I know the sensation of aural fullness is terribly bothersome and hard to describe, but it is important to know exactly what you are dealing with. If you could answer the following:

1. Are you able to pop the bad ear (successfully open the eustachian tube by yawning, swallowing, Valsalva, etc.?)
2. Does it feel like the "going up in the airplane" sensation, or not quite?
3. Do you feel anything in your throat area? Fluid discharge, pain?
4. Does the fullness ebb and flow throughout the day, or is the sensation constant?
5. Is the fullness always associated with hearing loss?

Secondly, regarding Famciclovir, I would absolutely stay the course if you are able to, but it is discouraging to hear that you are not seeing a response even on lysine/JOH. If you have a viral root cause, that should most certainly be of benefit. It is always possible that you are experiencing a flare-up, but 7+ months with no luck is important data to consider.

For what it is worth, I was recently diagnosed with TMJD and somewhat suspect that it is associated with my issues. I know you are also not finding relief through therapy regarding upper cervical misalignments, though. Have you been tested for allergies?

Lastly, regarding a diuretic, while I am not a doctor, I don't believe there is any need for a pharma diuretic. Dandelion tea is an effective and safer, natural diuretic if you want to experiment around with it.

I would also consider dietary changes: going on keto and intermittent fasting may help as well to reduce inflammation in the inner ear.

Hoping you find some relief soon.

 

1. Are you able to pop the bad ear (successfully open the eustachian tube by yawning, swallowing, Valsalva, etc.?)

I am not able to open up the bad ear...just the sensation of wanting to try to all the time. It's like an internal pressure thing against the inside of my eardrum when I do that maneuver (even swallowing adjusts the tinnitus sounds sometimes or that quick pressure exhale out my nose that my ear seems to want to release and then slides back closed again in a few moments) you can even sense the banging noise in my ear when it slides back completely closed. It makes you momentarily off balance/dizzy for a second...not to where you would fall though. The various doctors say the eustachian tube and middle ear part look fine based on quick exams and MRI/CT from 6+ months ago but they haven't been terribly thorough in their exams.

1. Does it feel like the "going up in the airplane" sensation, or not quite?

Fullness actually started after a plane ride 2 1/2 years ago. So, yes....it is constant with not very many fluctuations. Tinnitus (higher pitch) bad lately as well. In the past sometimes that Tinnitus pitch would change to lower just before it would open. When it opens it doesn't feel like a draining issue for me...it's just "oh" it's open now.

1. Do you feel anything in your throat area? Fluid discharge, pain?

No discharge and no throat issues, but moving my jaw around and swallowing can really change the fullness feeling a bit and cause variations in the tinnitus pitch and intensity momentarily.

1. Does the fullness ebb and flow throughout the day, or is the sensation constant?

Pretty much constant sensation when it is going on for days...into weeks....into months.

1. Is the fullness always associated with hearing loss?

My hearing loss is staying pretty constant at home while I'm checking it. Famciclovir seems to be keeping the fullness (plus JOH) a bit lesser, but still not improving very much.

Thanks for responding and your other suggestions. I'll look into the Dandelion Tea. I'm wondering even about any issues regarding Cerebrovascular issues related to blood flow and my ear. I wonder if others notice that.

I have been on allergy injections for 20+ years and that is under control for me. Diet is very low sodium...less than 800 mg a day I'd say. Not Keto, but have really tried to reduce carbs. I do eat some fruit (blueberries, strawberries, kiwi, an apple) along with some gluten free grains (tiny bit of cereal and some popcorn) but that is about it. Maybe getting completely rid of those would be helpful.

Open to additional thoughts from any of you. Thanks again.

 

I can only give you my experience with diuretics but I took them from spring of 2016 till mid-2021 while the weekly vertigo attacks started in '16 they did not stop until after I started the JOH regimen in late 2017. It took almost a year but I had my last attack in June of 2018 but kept taking the diuretics just in case they were helping (which they never really did). I haven't had another attack since then and have been off the diuretics for about a year. I think everyone can have different results with different drugs/supplements. There seems to be no exact answer for this malady. It never hurts to try any remedy just in case it is the one that helps. Good luck with your fight.

 

Kurtin, great response here and thanks for the information. That helps me understand a lot better since the many 'sub-types' of inner-ear inflammation can get murky.

I'm trying to narrow down your fullness even more to a precise type of cochlear hydrops. What is most curious to me is that these symptoms developed immediately after an airplane ride -- not after an infection. This tremendously indicates something structural with regards to the pressure change, I would think. As such, I would not expected famciclovir or JOH to work at all, unless they have a general anti-inflammatory effect. It is also conceivable, however, that the plane ride caused some kind of long-term distortion to your Endolymphatic sac (is this even possible though? I'm deep in theorizing, if others could weigh in that would be appreciated), leaving it susceptible to an inflammatory trigger such as a virus or allergies (but again--the immediate onset following the plane ride is curious).

Secondly -- your inability to pop your bad ear. Firstly, I am curious what your doctor made of this, after examining your ear and ruling it healthy. A Eustachian tube that cannot pop is not healthy.
This is where it gets tricky. I have spent the past half hour scavenging the internet (and Reddit) for a consensus on this and it continues to be mixed. Some Meniere's patients seem to say they cannot pop their bad ear, while others say that they totally can as the issue lies in the inner ear, not the middle ear (it may be more difficult to pop, but it does). It is also confusing as we do have data that there is a link between pressure equalization in the middle ear and inner ear, and I imagine that could go both ways [1, 2, 3, 4, 5].

I'm starting to wonder if the plane ride caused a sort of middle-ear distortion, which is putting pressure on your inner-ear and causing symptoms. But one wonders. I really need others to weigh in on being able to pop the ear vs not being able to pop the ear, please.

It sounds like you have been doing everything else very well. The continued allergy treatment sounds fantastic, and assuming it was thoroughly designed, that should help rule out allergies as being a cause of this, at least for the most part. Your diet sounds good too, and my knee jerk reaction would be to not change it much unless you are really desperate.

Again, my two big takeaways here that I think set you apart and need to be considered more:

1. The issues started following a plane ride, not an infection.
2. You are unable to pop the bad ear at all, suggesting an associated Eustachian tube issue.

Please feel free to clarify anything I may have misunderstood as I continue to ponder this case.