John from Ohio

John, I’ve had MD for two years. I’m only daily steroids, have had intratympanic steroid injections in both ears and streptomycin injections in one ear. I’m one of the lucky ones with MD in both ears.  Like you no success yet. Had vertigo attack yesterday and have persistent balance problems. Both ears with hearing loss. Streptomycin suppose to stop vertigo. Since had spell yesterday don’t know if injection is working in right ear and vertigo was due to MD in left ear. I’m interested in your clinical trials as to what they did. I’m constantly looking for new treatments. My doctor is really working with me, but I’m still having problems.

 

I was recently diagnosed with Meniere's and this is the first time I've heard of this treatment. I'm typically skeptical of remedies like this, but the idea that Meniere's is caused by a virus is interesting to me. I read some researchers think this might be the case. Just curious, what was it that made you think your Meniere's was caused by a virus?

Hey Dean,

My name is not John. Ha. I was referring to the John From Ohio menieres supplement regimen. I was wondering if anyone had success with it? It focuses on the viral aspect of the disease. I am convinced my is a virus. 

The clinical trial is out of Seattle. The company is Sound Pharma. The drug is SPI 1005. It's not designed to be a cure but it could be helpful. 

I wish you all the best. The last two years have been very tough for me. Hope you are feeling better soon!!

Menieres that is caused by a virus tends to be more aggressive. They have known for years that menieres is often caused by a virus. They have linked it to the herpes virus. Check DR gacek research. I highly recommend you aggressively treat it with anti vitals if you think it's s virus. I wish I had been more aggressive early on. It only gets worse. 

Hi Bmac339,

?Can you please let know how your experience was with SP1005? Did you get the low dose, moderate dose or the highest dose? I know they completed a Phase I/II in MD patients in June 17 and I am waiting for the results to be published. I was disappointed when OTO-104 (from Otonomy) didn't meet the objective in its Phase III but hoping that this glutathione inducer does offer some relief for patients in terms of their healing loss. Additionally, I would like to share my experience and offer some pointers if it helps anyone here. I have been successfully managing the vertigo (diagnosed after 2 drop attacks) without any meds with a lot of potassium rich foods. I wouldn't have had an attack for the last 6 months, come this October 24th!!! I do have a medical background and familiar with the inner workings of the inner ear....so trying to eliminate sodium (potassium exchanges for sodium) from my body without the need for diuretics. Now, I am not saying it will work for everyone and also I am otherwise a pretty healthy person. In other words, I don't have any heart conditions (if so, I would have to be extremely careful of a potassium overload) or any other condition that I am currently dealing with. Of course, I gave up coffee, alcohol, and any and all processed foods (just astonishing how much sodium is in all these!!!). Initially. it was tough as my taste buds were not happy, but then I am willing to sacrifice that to not experience the horrible symptoms of a vertigo attack ever again. Very small price to pay in my humble opinion. Also, I have started adding a lot of glutathione rich foods (broccoli etc.) in my diet and certainly can feel a difference in my ear fullness and hearing. Hence my curiosity on this compound and your experience with it. I recognize that this isn't a cure, but hoping that it will at least make our failing ears to rejuvenate even if not completely to the pre-MD stages to at least a reasonable level so we don't have to for hearing aids and so on. Thanks in advance.      

Thanks Bmac339. I started taking organic whey protein couple of days ago (available on Amazon - one with the US DA seal), as it has one of the highest glutathione inducing property, I can tell the difference - of course, I am going to take it for another 28 day as in the SP trial and see if it really makes a difference. But so far it has, even in these 2 short days! So I think SP's research on glutathione has some promise in my view. Besides, it is also a powerful immune booster and probably why some MD sufferers get better with antivirals. Let us hope for the best.

Also, a member wanted to know what I consume in terms of food.

?I use the following in my diet now: Potassium rich fruits and vegetables - bananas, broccoli, yam, white potatoes, onions, tomatoes

?potassium rich nuts - cashews, pistachio, almonds, peanuts

?Antioxidants - blueberries, strawberries

?Additionally, eggs, low fat milk etc. 

?Just google for potassium rich foods and you will find these. 

?

Absolutely, no coffee, alcohol (only one beer in the last 6 months), no chocolates, NO PROCESSED foods at all. 

?I did go see an otoneurologist (well respected and well published) at a leading medical center and his view was that this may be a variant of a migraine (some migraine sufferers experience vertigo) although I have never had migraines in my life. In other words, the reason for these triggers might be diet related. In my case, both drop attacks were after an extremely high salt diet. But that led me to start questioning the diets I have been consuming all these years and I started paying a close attention to the labels in supermarket shelves and was convinced that I am slowly poisoning myself with salt. That was when I decided to challenge myself and went on this salt free diet journey. I am glad I did! Of course, I do add little salt but not more than quarter of a teaspoon in the foods I consume. Hope this helps some folks. I don't get on here a lot so may be able to respond immediately. But will do when I can. MD is a manageable condition and a symptom of something else. So hang in there. All the best to everyone who is suffering as I can empathize.

 

I meant to say I may NOT be able to respond immediately in my earlier post.

Bmac339 there is a way to private message I think. I haven't used it as I am newbie here. But received a PM from another member. So feel free to reach me via that route.

?Also, one other point I wanted to make is that in general potassium is an important nutrient for maintaining hearing (and ear as whole) especially as we get older. Just google the effects of potassium and hearing and you will come across a lot of validated published evidence - if you are up for it and have interest in medical articles just search in "PubMed" which is where research articles are published. Potassium helps ensure that the quality of hearing is maintained - loss of potassium speeds up deterioration of hearing as we get older (a lot of nutrients and elements gets depleted as we age so not unexpected). Additionally, you need elements like glutathione and zinc for a lot of these catalytic reactions in the body. So even small amounts of these elements make a huge difference not only in MD sufferers but in general people who have hearing loss not due to a genetic cause but such as noise induced and age related sensorineural hearing loss. 

Bmac,

?I have heard the 3 stages myself and yes my MD is a little over a year now. But I have heard a lot of differing views on the progression (3 stage theory) of MD. Some say otoneurologists believe there in no such thing, while others do. Also, only some go through the burnt out phase. So not sure what exactly is happening as all of us seem to have a different degree and a variant of this MD. I have the classical MD with fullness, mild loss of hearing in one ear, and unpredictable severe vertigo associated with vomiting lasting for 30 minutes or so that knocks me out after. But the good news is that after the 2nd attack, I started this strict no salt diet, and haven't had an attack since and my hearing has stayed the same - in fact better on some days. Are you saying that your MD progressed to the 2nd stage (worsened) even though you adhered to a strict no salt diet and did all that is required of us right from the start? If so, I am sorry to hear that. I have come across folks who have done that and still didn't find relief.  So not sure of the cause there. Yes, please let know how the SP-1005 trial is progressing for you. I am keeping track of all the trials as we all do. I am also hopeful that companies like Frequency Therapeutics, or Decibel Therapeutics (who are heavily funded and backed by some heavy hitters) can find some solution for regenerating the hair cells. Although, not for MD patients, but this will go a long way in understanding the workings of the inner ear. There is also a nasal spray that is being developed by Auris for treating vertigo in MD patients. All this is exciting as ear diseases are a getting a lot of traction and let us hope that everyone of us benefits from such therapies. Besides, there is a group in Australia led by Dr Daniel Brown (University of Sydney) who is doing phenomenal work in MD. Let us all support his endeavor as we need to encourage and push for more research in this area. Just youtube or google his work. All the best to everyone.