Hello everyone it's great to be here with others I can relate to in the meniers community. I really look forward to sharing this diagnosis with people who really genuinely understand. So, I was diagnosed with meniers diseaes in 2012 in my left ear. The disease was unilateral at this point. It started out as an aggravating tinnitus, fullness feeling like cotton stuck in my ear and of course that aweful fluctuation hearing loss. Which all these symptoms where hard to deal with Considering my occupation in law enforcement. So my specialist told me to keep my sodium under 2000 mg and he put me on 50 mg htz (water pill). So I went home and did what he said. I really think keeping my sodium levels low was working, at least keep the symptoms of this disease mild. Well approximately 2 years later I had my first real vertigo attack while at work. Now remember I'm in law enforcement so I had to go home in secret. That attack was awful. It was five hours of throwing up because my vertigo. It is so weird how your ear heals in that attack also. Like nothing happened lol. After that initial vertigo attack I continued on having more bad attacks associated with mild vertigo in between attacks. So, I go to my specialists with going out on disability in my future. I know it's not safe living and working law enforcement with this chronic disease. Well my doc told me he can do a brain surgery that Involves cutting the eight cranial nerve that deals with balance (since the disease was unilateral). So, I happily agreed to this surgery although nervous because I was going to have to learn to practically walk again . I figured that this would keep me working. In Nov of 2015 I did the surgery. I was out of work for 3 months then went back to work. It was a rough recovery but I stayed active while sitting at home. I walked and did balance exercise the doc told me to do. I will have to say best surgery for meniers I have had no vertigo at all thank God!!! So, it's been three years now post op. I'm now showing signs that my right ear is involved. The same initial sypmtoms as the left ear. It's scary because this is my good ear I depend on balance and hearing. I'm going back to my specialists next week to see if I have any other options to save my career. From my understanding you can't cut both vestibular nerves. I have no issue getting another hearing aid to help me hear. I'm just frightened now with hopes of more help from doc. Does anyone know of my options considering my situation? Thanks
Glad to meet you, sorry you're here. Long story short, my MM came about because of decades old (stealth) dental infections, and decades old "leaky gut". Clearing my dental infections and fixing my gut has improved my health quite a bit, except for the tinnitus and hearing loss. Have you ever had any dental work? Root canals or pulled teeth? Root canals are notoriously unreliable, and have a high failure rate. Additionally, mouth injuries or wearing braces in your youth can cause bacterial exposure to your blood stream, specifically, the part of the blood stream that runs by your ears and vestibular nerves. Do you have any heart arrhythmia, specifically PVCs (Pre-Ventricular Contractions). It feels like your heart skips a beat, but it's because one of the beats comes too quickly. Doctors don't normally worry too much about them unless they're severe. Poor gut health may pay are part in it. If you have any lower GI issues, addressing those may help. If you've had chronic sinus issues, that is also a possible reservoir of infection. There is lots of good information here. Be sure to look up the JOH Regimen. CBD oils is helping folks. Good Luck!
Thanks for the response friend. Where can I find information on the JOH regiment. I've never heard of it. Thanks again
Admin Post Peter, welcome to our forums! You can read more about the JOH regimen in our database here: JOH (John of Ohio) Regimen for Meniere's Disease details There's more to be had in our database -- they're all curated from our forum: Database. I don't have much experience with regards to surgical procedures; I hope others here can chime in. We've had some folks that are bilateral. Here's some of their posts: Search Results for Query: bilateral | Meniere's Talk forums Of late a lot of folks have had good success (I'm one of them) with anti-virals as a noninvasive treatment. It's pretty new though so it hasn't surfaced in a lot of places. We have some stuff on that in our database too (like this: Clinical Data Supporting Antiviral Treatment of Meniere’s Disease), you may want to explore and try that for awhile and see if it helps your symptoms before taking a more permanent step. I wish you all the best, Ray
Peter rabbit, I'm sorry you're going through the bilateral stuff. For those of us who have had destructive treatments on one side already, it's what we worry about and have many questions about. I hope you will post what you find out.
Well as of now all they seem to be able to do for bilateral meniers is Prednisone 10 mg once a week. Of course low sodium diet and diuretic. My audiologist told me that only rare situations that the surgeon will do destructive surgeries on both sides. If so you will have to do thearypy.
Peter rabbit, I found this on Dr. Hains' website (Last resort treatments of Meniere's Disease): Bilateral labyrinthectomy with cochlear implantation for bilateral Meniere's disease. This very aggressive treatment was recently reported by Mackeith et al (2014). The basic idea is to eliminate all inner ear function with bilateral labyrinthectomies, and use a cochlear implant to provide "bionic" hearing. We are unenthused about this idea for several reasons: First, surgical removal of the inner ear would make it impossible for hair cell regeneration to every be useful. This treatment is currently in clinical trials, and we expect that it will be eventually (i.e. by 2024), able to repair some of the "original equipment" in Meniere's disease. Second, this is an irrational procedure. One can use streptomycin (see above) to eliminate bilateral vestibular function without affecting hearing. One could then still implant one ear, leaving both vestibular systems potential candidates for hair cell regeneration in the future.
I hate to be the spoiler of bad news but I do not think hair cell regeneration would be beneficial to menieres sufferes because the very nature of menieres is to kill and destroy inner ear function including hair cells. There would need to be a cure to mm for hair cell regeneration to help us, otherwise the regenerated hair cells would just be destroyed again by the disease. I have seen Dr. Hain in Chicago a number of times and I think Dr. Hain falls into the camp that Vertigo has to be stopped first and foremost, at least that has been my interpretation of our conversations. I think the best hope for all of us is what is going on at John Hopkins with Dr. Della Santina and his vestibular prosthesis which restores inner ear function. They are already in clinical trials and looking for more participants and from what I understand the trials are going GREAT, one of the men who has had zero vestibular function for years in either ear has indicated he feels like he could ride his motorcycle across country.
I know several people who have had double VNS and Double Laby with cochlear implants, as well as Intramuscular Streptomycin and gent shots in both ears.....People I met right here on this forum, they don't come around much anymore because they are out living life and traveling, working and doing the best they can. I firmly believe from what doctors at Harvard/Dr. Rauch....Emory/Dr. Mattox......House Ear Clinic ect….have told me that one is better off without vestibular function than with intractable vertigo from MM. Life with vertigo is simply no life. Without Vertigo means I can still go out, go on vacations, watch my kids play sports, ect…. They are very personal decisions but when it comes to afraid being able to leave the house for fear of vertigo I feel its best to take it out and get on with life. I can live with using a cane, scooter, walking stick if needed, I cannot live with my head in a toilet barfing for hours without warning. God Bless my Friend. Good Luck my number is 404-408-3515 if anyone needs to talk. leave a message and I will call you back that night same day.
PeterRabbit, " It was five hours of throwing up because my vertigo. It is so weird how your ear heals in that attack also. Like nothing happened lol." Been there many times brother. And yeah, it's weird how after a violent 12 hour attack, your ear just says, ok, that's all I wanted to do, I'm good now, let's go to the gym. I'm wondering why exactly you think your good ear is acting up? I mean, what are the signs that make you think this? I'm told, and I feel myself, that the good ear can act a bit funny, but only because it's somehow "connected" to the bad ear. (P.S. If you write a long paragraph, do try and split it up into smaller paragraphs. It just makes it easier on the eyes and more pleasant to read than a giant block of text.) Bulldogs, you're a thoroughly righteous dude for giving your number out like that, and being willing to talk with strangers out of the blue.
Pupper, my good ear started fluctuating with noticable tinittus back in Sept. It also presented some vertigo along with naseau. It last about three days then went away. November comes and here we have it again same symptoms. this time I made a appointment to get my hearing checked because the pressure was bad in my good ear and it sound really muffled like everything I talked to was under water. The hearing test showed my low frequencies we're around 60 decibals and the higher frequencies we're on the higher side but not normal. My word recognition was 80 percent. The doc so me and looked in the ear and of says I have bilateral meniers. Then prescribed Prednisone.
Claire - Great info from Dr. Hain - that is awesome that he is actually taking the hair cell regeneration research seriously and recommending his patients consider that in their treatment plan. Bulldog - you are the man I always agree with 99% of what you say on here but in regards to hair cell regeneration - we don't know what we don't know. We have no idea how a MM sufferer will react to it. There are many MM sufferers who are able to manage their symptoms after a while (diet...anti-virals...neck adjustments...Australian SS...luck i guess too ha) . How do we know this wont help them? Or John from Ohio who has been symptom free for 10 years plus - but has no hearing in his ear...might help him no? In any case...Its a rat race to get this to the market. Major players all over the world are working on it. Regardless of it helps me...it would pretty awesome if they could help others. The thought of people getting hearing back is amazing...fingers crossed on the research!!
My otologist told me three years ago after my vns that I would be a canadiate for that hair cell regeneration in the futer. He studies. This stuff in Europe every summer so I'm sure they know what they are talking about.
Peter Rabbit. Yeah, I see what you mean about your other ear. Sorry to hear that. Man, if my good ear ever goes MD, I don't know. I just need to be strong. Don't even want to think about it. On the plus side, the experts say the short & long experience is not nearly as dramatic as when one's first ear gets MD.
Peter. I just meant that when you go bilateral, it's not as dramatic/difficult as when you first got MD. I read this in a few places, and from Dr. Timothy Hain. I can't recall the exact quotes. Anyway, I took it as maybe I won't have the violent 12 hour attacks like I did when it first appeared. I recall being quite relieved when I read it won't be a "repeat" of the first onset.
Ok thank you! So is it more like dealing with hearing loss in both ears with no vertigo? I'm looking into going out on disability in my law enforcement career at this point and find another job.
I'd think when a person goes bilateral, surely there's increased dizziness and possibly even rotational vertigo attacks. Just saying it's my impression from what I've read that it's not as bad as when a person first gets MD. Yeah, it's got to have thrown you for a loop being law enforcement. Sucks man.
Peter Rabbit: I'm sorry I'm just seeing this post and so sorry for what you are going through. I'm a civilian in law enforcement and boy, talk about not being able to tell anyone at the station! Mines is left ear about 2009. I've had two endolymphatic sac decompressions, which did not ultimately help. I've been getting intertympanic steroid injections every two months which has helped stable me out enough so I can mostly function at work. I get dizzy, but not those violent vertigo attacks where you can't lay down, you can't sit, everything is constantly spinning and you're always throwing up. This past month, the symptoms are creeping into my right ear as well. I'm hoping by "catching it early", it maybe won't go as full blown. Anyway, see if your doctor is open to the intertympanic steroid injections. The protocol is one injection into the ear (if you have a permanent tube like I do in the left ear, the delivery method is through the tube which is easier), once a week for three weeks. Then wait a month, then the 4th injection, then every two months there after. The steroid is dexamethasone. You may or may not need the concentrated dose, depending on how shallow your ear canal is. Mines is the concentrated dose so that only half the liquid fits in my ear but I'm getting the full dose since its concentrated. Wish you the best. Write back or post if you have any questions.