Living With Menieres & Tinnitus | A Personal Story & Why I Do This Channel

[@bwrobert]

John, I'm four years into MD and whilst playing your tinnitus section my husband yelled "what is that, turn it off". I said what? thinking the numbers were simply a countdown to the example. He continued "that terrible sound". I never heard it, obviously I've lost the frequency, my tinnitus is a whooshing air sound at a lower frequency. I'm been trying to explain to him what tinnitus is, thanks to you he totally gets it now. Thanks for sharing your journey.

[@JohnBanks1978]

Yeah, I know what you mean. I had to get my wife to check the sound for me as I can actually hear it because that is the exact same sound I have in my head 24/7 so it was hard to tell the difference between the two. I am glad it provides some useful information into what we have to go through.

[@steph2016]

Thank you for sharing! I just starting hearing a high pitched sound about 5 days ago. My anxiety is really bad right now, but I find videos like this very helpful. I'm very scared because I don't want to loose my job, because I have 3 children to support. But it's comforting knowing that other people understand what I'm going through. Please continue doing videos, sharing your experiences. It will really help others learn to cope.

[@JohnBanks1978]

Thank you for your kind words Steph. I really appreciate it. Don't be scared, there are management techniques that can help. We are all human, we have to help each other out. Im sure you will find a way. Keep your closest by your side. Support is really useful. Have a great week....

[@NeverHADaNes]

Stay positive. I understand the anxiety especially when it comes to being a supportive parent. Hope your doing well.

[@glempy]

Thanks John. Very dark place indeed. > 8 years here. My world has become very small. I have a great friend and a great wife who try to understand. ... just a note to those living with a MD sufferer, please do your best to understand that you can't understand. You can't understand, and we don't expect you to. The dark places can be very dark despite all the strength in the world. Please just be present and reach out with love. That makes a world of difference.

[@JohnBanks1978]

Hi - thanks for your comment. Some very wise words there. I wish you all the best for the future.

[@NeverHADaNes]

Hey. Thank you for making this video and being honest and straight forward about your experience. I’m in the process of being checked out for MD. Seen the doctor, seen the ENT and now referred to a more specific ENT department. I’m fully aware of Ménière’s as one of my favourite musicians has it (Ryan Adam’s). I started suffering from those crazy vertigo episodes before my kids were born (2014), the ones where you totally believe the whole world is slowly turning upside down like a capsizing boat and you wonder why everything isn’t falling off the tables and why people are not starting to end up on the ceiling (like the scene from A Nightmare on Elm St or The Poseidon Adventure). Gradually turned into more of a constant dizziness with less big attacks, constant ear fullness and ringing in my ears. It is totally disabling. I also have high functioning autism. So slap both of those problems together with 2 young kids and yeah I do feel disabled. Always tired, always dizzy, always hearing that damn tone in my ear. Haven’t even turned 40 yet and I feel like a crippled 90 year old. I guess my biggest fear is losing my hearing because my biggest love in life is music. And I’ve noticed I’m losing the lower frequencies now (bass) in music. But gotta stay positive and I’m glad your doing the same. I understand how hard it is. Good job on sharing your experience. Hope you well. Just wish the NHS would be quicker to bloody diagnose. Took 7 years to get a full diagnosis of autism. Hopefully this one will be quicker. Stay safe!

[@JohnBanks1978]

Thanks for such thoughtful comments! I really hope you find your peace with it. I totally get where you are coming from and can relate to everything you've said. Music is a massive passion of mine, but sadly my hearing has gone in my right side and been replaced with 24/7 tinnitus. Its barable most days so I manage. I ended up going private in the end, but now thankfully on the NHS again after my diagnosis many years ago. Hope everything works out for you. Feel free to reach out if you need a chat. Take care.

[@avihana2002]

Thank you, John. It’s really kind of you to post this. I hate that others suffer like this too, but at least I’m not alone.

[@JohnBanks1978]

You are definitely not alone. Thanks for commenting 🙂

[@voitekl]

Thanks for sharing. I have had MD for over 18 years now, and it can beat the life out of you. The last year probably has been the worst ever for me; I’ve lost over 40% of my hearing. I really appreciate your video it’s almost impossible to explain MD to someone that has never experienced it

[@JohnBanks1978]

Thanks for your comment man. I really appreciate it. I agree with you, it's hard to explain unless you actually go through it. Take it easy bro 👍

[@isolde1802]

Hello John, thank you for this. I have Meniere's and I was diagnosed back in 2016. There is hope and I found it helpful to know that I am not alone. Stress and weather seems to be my triggers. I try to maintain a more relaxed lifestyle and when the bad days come, total bed rest is needed. My tinnitus never goes away, it's a constant pulsating sound that is sometimes loud. I have learned to deal with it. Again thanks, and hope you are doing well. Lisa

[@JohnBanks1978]

Hey Lisa, thanks for reaching out. Yeah, its very important to know you're not alone with this. Even if your having a bad day you can understand someone else sadly is going through the same thing. I found it great to talk to other people who have it. I wish you all the best for 2024!

[@GuyandLori]

Thanks for posting this, John. Although I’m fortunate to continue my employment with the same company for 33 years, Ménière’s has drastically changed my career path within the company and ruined chances for advancement. At this point, I’m simply hoping to complete four more years to finish up. Also, that short clip of your tinnitus mirrored mine, almost exact. Thanks again as seeing others with the same rare, chronic condition certainly makes us feel less alone.

[@JohnBanks1978]

Hi Mate - thanks for your comment. Sorry to hear about your work, I know exactly what you mean. Yeah, I think the Tinnitus sound we have is a common one, the dreaded high pitch - nasty. Glad you are still working and living a decent life. Thanks again for popping along and taking the time out to comment.

[@kazfor3769]

Wow, I admire the fact that you are still working, you may not have been able to advance in your career but what am amazing achievement to have held down a job!!!!!! I am newly diagnosed with menieres and am finding it a struggle just to leave my house let alone work, I so wish to be able to work again one day, I feel guilty for not working but this condition I so disabling, my attacks are so servere when they happen I cannot walk or move and my eyes bounce all over the place so I cannot focus properly, the thought of having an attack in public or at work and not knowing what to do if it happens in public or at work frightens me so I'm stuck at home all the time, I so admire you courage!!!!! Good luck for the future.

[@JudyC1356]

Ty for starting this. I had my first episode on the 6th of December. Vertigo, tinnitis, and immediate hearing loss. By the 21st of December I had seen an Audiologist to have my hearing checked, and made an appointment to see an Ear, Nose and Throat Dr. Unfortunately that appointment won't be untill the 23rd of March. After I see my Primary care physician next Thursday, I hope to return to the Audiologist to be fitted for a hearing aid. The biggest trigger for me at the moment seems to be stress. My symptoms are verigo almost daily. The tinnitis sounds like the ocean in my ear. That has not gone away since 1st episode of vertigo. Experiencing some balance problems and brain fog. I'm staying as positive as possible for my family's sake. But honestly I'm terrified! I catch myself asking "how does a person lose a significant amount of their hearing, in the blink of an eye. No warning. Nothing. On a positive note, I'm not depressed. Only scared. It does change your life, doesn't it?

[@JohnBanks1978]

Please dont be scared - soon you will find a plan that fits around you. Get some good advice from your ENT. I really hope things work out for you. I have been there, I was even in a position where I was due to have an operation which would have basically killed off the balance mechanisms in my right ear completely - I was going to pay to have it done privately. But the Dr said lets leave it for a little while longer, I am glad he did as I had a really good 5 years or so after that. It is a strange illness, it can settle down for no reasons it seems. But then flare up again for no reason.... Get some good, positive people around you, kindness always wins as with everything. You'll find support with this. You are not on your own. Thanks very much for your comment. I wish you well.

[@petercofrancesco8979]

Hi Judy , I Have The Same Situation , I Have A Ringing in My left Ear , Sounds like a High Pitched Jet Engine , Started Dec 10 th,To Date as of This Text , I've Been To My Primary Dr.Twice , Emergency Room Twice , Had Blood Test , Everything Normal , Including Allergie Test , Also Came Back Perfect , Hopefully Going Tomorrow To ENT , OR Next Week. Let Me Know How You are Doing , Best Regards, Pete.

[@JudyC1356]

@@petercofrancesco8979 I'm so sorry to hear about the high pitched tinnitis. I have an appointment scheduled with my primary care on Friday of this week. It was scheduled for this last week, but unfortunately I came down with a bug, and couldn't be seen with the lingering cough. I was happy to be able to reschedule so quickly. I have an appointment scheduled for a hearing aid the first week of February. Glad for that. First of all I feel so blessed after reading all the stories of people on the Meniers support groups I've joined. Some pretty gruesome stories with lots of suffering. Today was a fatigue day for me, after having had an energetic and full day yesterday. Some nausea. but nothing that I couldn't handle. Do you ever have trouble with your eyes as well? My vision was a bit blurry today. Nothing major. I lityle bit of a balance issue ae well. New trigger discovered today as well. Was streaming Haweye tonight and the fashing lights on the episode I was watching caused the nausea

[@petercofrancesco8979]

@@JudyC1356 , Sorry To hear You are Suffering As Well , I Have Not Had Any Eye Problems as Of Yet , My Primary Dr. Said , I Have a Blocked left Side Eustachian Tube Causing Ear Pain and Ringing in My left Ear , Tinnitus . He Told Me To Get Allegra D to Dry Up Water ,And Any Infection Associated With My Condition . Allegra Might Be Working, Yesterday First Dose Much less Pain , How Ever , 4 Hours Spiked My Ringing In left Ear , lt Can Takes Hours or Days For left Ear To Quiet Down To A Manageable lower Tone . Most Times I Get Between 1 and 4 Hours Of Sleep Each Night , Due To Ringing in My Left Ear . If It Was Half The Ringing Sound , It Would Make My Daily Tasks and Sleep less Nights More Manageable . please Do Keep In Touch ! Again Judy ,We Are Not Alone 👂! ☕

[@andrewharchar891]

I have the exact same story! But, My wife left me 9 years ago, convinced my adult children that I was lying to cover my being abusive, after all was said and done she had it put into the divorce documents that I could not sue her for desertion! My lawyer said to me let her go, you have the proof you wanted that she is no good, stop fighting it, Its public record now, she is just no good! So I signed and now I live with this disease alone! If I watch my salt and sugar intake and take plenty off antioxidant vitamins I'm ok. Humid weather, intense heat in the summer and most of October are horrible, because the furnace kicks on! Yeah it's a challenge but at least you have youe family!

[@JohnBanks1978]

Jeez man, I hope you find some peace one day pal.

[@GinaHarmeyer]

Just found your video. I am in the middle of being diagnosed with MD. I just had an MRI this morning, hoping it will give us some answers. Not sure how long I have had it but I have had 3 bouts of major vertigo since 2021. First bout lasted a week, second bout lasted probably 4 weeks total, the last one in November 23 lasted at least a week. I also have 24/7 tinnitus that is a high frequency, though the one you played was much louder/sharper than what I have. I recently went to an ENT for sinus issues but requested a hearing test because of my left ear. That's what started me down the path of getting diagnosed for MD. She said the graph for my hearing test showed an asymmetrical hearing loss pattern consistent with MD. I am also starting to get more fullness feeling in my left ear. Thanks for sharing! I have no idea what the future holds but it's nice to know there are others who can relate!

[@JohnBanks1978]

I wish you the best of luck. Despite the bad times, the good times will still shine through. You have to say that to yourself. I have lived with this for 18 years or so now. Im still standing... Thanks for the comment and watching the vid. Appreciated.

[@zerohero187]

Thanks for sharing your story. I am 44 & live in new york city. I was diagnosed with MD 2 months ago. I seem to be one of the unlucky few that have it in both ears. It has drastically changed my life and not for the good. I literally woke up one day and couldn't hear. I nearly fell trying to get out of bed. My job is in serious jeopardy. I am an excavator operator so I am in a machine that literally spins. Add the spinning in my head and it is literally impossible to do. I've only had a few manageable days over the last 2 months. I've seen a slew of doctors and no real promising course of action. I've had to miss 2 weddings for family and friends. It is so hard to explain in words what is felt and why you can't do certain things. At least half the time I feel like all my coordination is gone. I also have an extreme sensitivity to certain sounds so I wear ear plugs sometimes which intensifies the tinnitus. I guess its a trade off of what is better to do at that time. When the frequent attacks are bad I can't even think rationally. I have terrible mood swings and find myself uncontrollably snapping at my wife and kids. I feel horrible when it happens because it's usually not warranted. I know they can't fully understand what is happening in my head. I have found it just easier to try and sleep when it gets really unmanageable so I don't have to deal with it. I am sorry for ranting. I still haven't met anyone who truly understands the struggle. Not even the doctors. I will probably try anything to make it even the slightest bit better. I am literally desperate and can't imagine living like this forever.

[@JohnBanks1978]

Mate, I completely understand what you are going through 100% - I can relate to all of this. Whilst I don't work in a "spinning" environment, my job does require me to "be upright and walk etc" so even that can be challenging as you well know. I cant say anything really mate other than keep the faith. There are cases in people where the Menieres simply burns itself out and they can get back to some kind of normallity. I was really struggling last month so I went back on the Betahistine and completely stopped booze and anything with Aspatame in it. Touch wood, things have settled back down now. Could be the changes I have made, or could just be things for that shite period have run their course. We will never know. I miss events all the time, don't worry about that. People don't get it. We can't blame them really, life gets in the way etc. I am happy to chat whenever mate, just hook me up on Insta. You can get my account via the KZbin channel page.

[@zerohero187]

@@JohnBanks1978 thanks for the encouragement. It's been really hard to except my life being literally changed overnight. If there was a specific event that happened to cause this than it may eventually be easier to except. But, when waking up into an unrecognizable situation....well it's been really difficult to except. I've never had health or physical issues before. This seems to be physical & a mental impairment in one. I do believe one day I will either find things that help or find ways to deal. I have noticed that caffeine definitely brings on an attack so needless to say, I've quit coffee. I don't think the caffeine withdrawal helped much with all my symptoms at the time but I do believe it is helping a little now. I find staying away from salt the most difficult part of an "MD diet". Best of luck to you John and thanks for listening.

[@JohnBanks1978]

@@zerohero187 There are loads out there that can help. I have been "experimenting" with subtle diet changes, lifestyle changes etc. I am also reading more and more about it. Not everything sadly will be told to you via an ENT. They have their methods and ways and there is no "one solution fits all" for this. Keep going mate, be sure to check in once and a while. Have a good day.

[@zerohero187]

@@JohnBanks1978 I really appreciate you taking time out of your day to respond back. Your words give me a little hope. That is all I was looking for. Thank you

[@robertpewsey8931]

Hello John, just watched your video and having been diagnosed with MD 3 years ago recognise everything you mention. I've watched several videos from other sufferers and everyone has broadly the same symptoms, but nobody mentions the speed of the spinning, for me it's really fast, everything jumping from left to right or occasionally up and down. I had 3 steroid injections which have helped a lot, though I still get attacks out of the blue occasionally. I work nights in Waitrose, and as an employer, they've been brilliant, now that my original manager has left, who found my attacks and deafness hilarious. A new manager who's sister has MD, was much better. This condition changes your life much more than people realise. I rarely drive any more, and never alone. Dare not ride my motorbike, and generally seem to have lost interest in everything. I think I can hear you have a slight Suffolk accent, which is also my part of the world. It's nice to hear someone talking about "menieres" rather than "minures" the way the Americans pronounce it. All the best.

[@JohnBanks1978]

Thanks for your comment mate. I am based in Hampshire. I hope you find peace with it brother

[@alwaysmarcy9428]

I know exactly what it's like, it's hell on Earth. I'm sick of it, so sick of it

[@JohnBanks1978]

Sorry to hear this Marcy 😢

[@alwaysmarcy9428]

@@JohnBanks1978 thank you, I just want to get out of this one episode. But it hasn't left yet

[@JohnBanks1978]

@@alwaysmarcy9428 do whatever you need to do. I really hope it passes soon. 🙏

[@stephenfortenberry5372]

Thank for sharing, been dealing with MD going on 8 years, have months at the time where it does beat me down, but keep fighting the fight.

[@JohnBanks1978]

Always keep fighting. Thanks for your comment.

[@alisonbenson2119]

Thanks for sharing this with us John.

[@JohnBanks1978]

Thank you for your comment Alison. I hope you and the family are well

[@johnryan7967]

Nice presentation. I have had meniere's for five years and the vertigo incidents have increased over the last month. I'd like to hear more about the "snake oil salesmen". I think Synapse KT may fall into that category.

[@JohnBanks1978]

Haha yeah, unfortunately these salesmen tend to crop up when people suffer.

[@johnryan7967]

Synapse KT has a very slick 40 minute video where they make the claim “we cured all 67 users of vertigo 100%”.

[@heatherrubino8844]

I absolutely relate to everything you had to say. Thank you for sharing your experience. I've never experienced depression before, but I've had some dark nights of the soul since this started happening to me about 16 weeks ago.

[@JohnBanks1978]

I wish you all the best and a calm, joyful future. You will get through it. Stay strong, connect with people who are going through the same as you. You are not alone. I'm happy to talk if you ever need to.

[@sarahbeery6132]

Thank you for sharing….I was DX with MD in 1980….I didn’t have a vertigo attack for over 10 years. I still don’t get them often. I have dizzy and balance issues 24/7. Tinnitus constant in both ears. I didn’t hear your 10 second tinnitus frequency….not sure what that means for me? I haven’t seen an ENT for many years….nothing they can do so didn’t go back.

[@JohnBanks1978]

I know what you mean about not going to see the ENT. I felt like that last month. Take care. I can assure you there is a sound during that sample section.... although I struggled with it too as its the same as my own Tinntius sound!

[@honieebean]

Thank you for sharing! I've been dealing with meniere's and tinnitus as well. Mine is high pitch as well and it can get very tiring. I've started gardening and found that's a nice escape. It also gives me something to look forward to, since as you said it can be difficult to plan in advance

[@JohnBanks1978]

I totally get all this. I'm a big gardener too. Thanks for commenting 🙂

[@BrianIglesiasROT8records]

My tinnitus actually stopped for a while when I listened to the track. I was also diagnosed with MD. Constant imbalance and movement issues. Hoping to get acupuncture soon and go on a low sodium diet. I hope all is well with you. Subbed because of this video and I'm looking forward to watching your financial videos as well. I also need assistance in that department lol. cheers!

[@JohnBanks1978]

Cheers Brian. I appreciate that

[@DanaStargazerTruitt]

Thanks for sharing your experience, my friend. I’ve recently started dealing with this and it’s definitely a like the carpet being pulled out from under you. I fear what the future has in store. I’ll definitely follow and support for sure. Hope all is well with you and definitely would love an update on how you’re feeling, perhaps it gets better?

[@cindyglass5827]

Thank-you for sharing your story ~ I am going through this & looking forward to my upcoming Specialist appt.s to hopefully get a handle on it / some help with it ! Again, thanks for your YT channel. Hope you're ok ? Sincerely, Cindy : ) I have subbed

[@JohnBanks1978]

Thanks so much Cindy. Hope you are well and get a good plan together for your treatment.

[@chris7921]

I’ve had tinnitus since I was 8 due to having issues with my eardrum, I’m now 40, I also hear music which is another extremely rare type of tinnitus, it’s known as audio pareidolia , there is also conditions known as musical ear syndrome or musical hallucinations, though this isn’t the same as getting a song stuck in your head due to it being catchy. With musical hallucinations you can hear the music in quiet places. Where as audio pareidolia you will only hear music or phantom singing, tunes, old melody’s when around white noise, things like fans, running engines, running water.

[@JohnBanks1978]

Blimey, I never knew about that variant of Tinnitus. Thanks for sharing your condition and story. Sorry to hear it mate. What do you do to manage it?

[@chris7921]

@@JohnBanks1978 The hearing of music seems to come on with anxiety and when I’m around white noise so I try my best to avoid stress and anxiety. Some meds can also trigger it especially sleeping pills. It’s such a rare type of tinnitus that many GP’s don’t have any knowledge of the condition and as such when discussing this condition the first question I get asked is “Am I hearing voices?” Which I suppose I am I just haven’t got what they think I have. But there is information about this on the internet and I’m sure many ENT specialists would know of this condition It’s the same issue with my tinnitus, I can sometimes have rebounds, I’m certain anxiety plays a massive part, definitely when I’m over tired

[@parmjitkumar5950]

I’ve had this for years now but getting worse I’m having more attacks now I just don’t know what to do I’m so depressed with this disease so scared to go out been off work now for three weeks keep getting the attacks .

[@JohnBanks1978]

Jeez man, that is bad. Try to get some help and treatment if you can. I found my meds helped a great deal, I have since gone back on them and made some quite big lifestyle changes. You can do it too bro!

[@alberthaug-t4p]

Thank you for sharing. I was never given a actual diagnosis but meniere,s was top of list. Mine started at work and had to hug walls to get out of building. I drove car verily looking over dash board. Throwing up quite often. Ended up in hospital for 2 days. When i would open my eyes the world would start spinning and i would throw up. Finally went to e,n,t. Specializing in vertigo and tinnitus. In there office they did the procedure to reset the crystals in my inner ear. This made life better. The loud noise has never went away. It started out what i would call a 23 on tv volume setting now 10 years latter it can be in low 30,s on volume for tv. I will weare my hearing aides to help understand speech and music . Fall to winter i start to notice more dizzy and noise louder. If i get real sick i go into vertigo or have fever. I had the maneuver on my head done around dozen times in past decade. Ill enter office with vertigo and leave walking strait. I can not go any where with roller coaster running over my head or things spinning will make tinnitus louder then ill go into vertigo. I need surgery on my neck has been one theories of my problem. The noise in my ears is louder than my c,pap at night. I fall asleep fast from exhausted from noise but when you wake up good luck falling back asleep.

[@alanwardle2099]

Sorry to hear about your health problems John it must be awful and life changing. I will try and get a few more to subscribe to reach your 500 target. I couldn’t hear anything at all on the clip - do you think that means I have a hearing problem?

[@JohnBanks1978]

Hopefully not Alan!! Thanks for the comment. I appreciate it

[@skreczmer]

Hi John, really great information! Thank you! I didn’t hear the tone you ran at the end at all. Any idea why?

[@JohnBanks1978]

No idea mate. That's not a bad thing trust me lol... its a nasty high pitch 👍😁

[@donsan6404]

thank you for your story.

[@JohnBanks1978]

No problem. I am sure many people can relate to it.

[@chicoingles1]

Hi John. First time visitor here. Very interesting and sad video. I have had a blocked right ear on and off for around 7/8 months now during and then after colds. I have been to the hearing clinic twice over that time and have been told there is no wax present. Each time the issue has resolved itself with decongestant tablets after 1/2 weeks. My ear unblocked itself last Thursday and then blocked up again on Friday. My hearing is reduced in that ear now. I do have a consultation with an ENT specialist this week because I don’t understand why it keeps happening. I keep thinking it could be Ménière’s disease (I understand there is a subvariant of the disease where no vertigo is present - I have not had vertigo at all over the last 7/8 months) or a choleastoma, but hopefully it isn’t either. I would be interested to hear from you. Take care.

[@JohnBanks1978]

Hi, how did it go with the ENT? What was there conclusion?

[@chicoingles1]

@@JohnBanks1978 The ENT specialist advised I had an accumulation of middle ear fluid, after ruling out a choleastoma, nasopharyngeal carcinoma and Ménière’s disease. The plan was for me to have a myringotomy to drain out the fluid. Two days after the consultation, my ear seemed to clear. I then contacted the ENT specialist’s secretary to cancel. My ear has not remained blocked since then permanently, but it does occasionally block when I go to the gym and then unblocks itself again sporadically (I am assuming due to condensation). I was also on the NHS waiting list for a myrinogotomy after being referred by my GP and actually got a reminder last Monday about whether I still wanted the intervention. I said I didn’t. I don’t think the issue has completely resolved, but it is not blocked like it was before. How are you doing?

[@rfwoods]

Thanks for sharing your story. I have tinnitus in my right ear as a result of a sudden hearing loss in 2020 which has left me with severe to profound deafness in that ear. My tinnitus is more of a soft static, whooshing sound like when a TV or radio is not tuned to a channel. However, I do get warbling higher pitched tones at times which can be uncomfortable and distracting. It took me a while to come to terms with it. It had been difficult to concentrate on work or other tasks at times, but as you said you just have to learn to live with it. Hang in there.

[@JohnBanks1978]

Yes mate - I totally understand brother. Stay strong. I have accepted mine now, since this video I have made some more lifestyle changes such as quitting alcohol 100%. This has made a big difference too. All the best man, hang in there too.

[@Paul.in.Ireland]

The frequency of that high pitched sample seemed to match my tinnitus somewhat John... Your story and journey with this horrible illness almost matches mine exactly... I remember my first attack too .. straight out of nowhere .... No warning, just as if someone flicked a switch... I'm on 3 X betahistine 16mg per day to control the attacks and it seems to have settled but I still have some dizziness if I make sudden moves/ bend down etc .. I too have been left with high pitched tinnitus 24/7. Mostly in my left ear but sometimes both... Still waiting to be fitted with masking sound generators/hearing aids but with the NHS under extreme pressure due to the current pandemic I just have to wait... I'm also following you on Instagram and made a comment on your tinnitus bingo post ( it was a brilliant post btw ) I'm Paul from Ireland... Anyway mate thank you for sharing your story .. I really can relate to everything you said.. god bless 🙏

[@JohnBanks1978]

Yeah - you and I sound like we have a very similar "version" of this. I was on betahistine x 3 each day too when I was at my worst. I managed to wean off them in the end when the frequency of attacks settled down. Although my ENT on my last visit did mention about going back on them again. They definitely worked do a degree I think. I also have Buccastem for when I have an attack, but they are really high voltage and pretty much knock me out if I take one of those. Do you have them too? Haha - yeah, Tinntius Bingo, plenty of full houses on that one. I should continue that Instagram account again really. Thanks for your comment mate - I really appreciate it. Feel free to message me anytime if you need a chat or a beer lol... Take it easy mate.

[@Paul.in.Ireland]

@@JohnBanks1978 cheers John... It really helps knowing that there is someone who knows exactly what I'm going through... My friends and family try to understand but just don't get it at all, in fact some say " I had that in my ear one time, it goes away.. just ignore it" .... Thank you again John. 🙏👍🙏

[@murphypaschal]

@Paul in Ireland Hi Paul. Have same condition as yourself. Diagnosed in St James's Hospital, Dublin. Would you be interested in sharing any useful information about negotiating your way through this condition in Ireland? Cheers. Paschal. Galway.

[@Paul.in.Ireland]

@@murphypaschal hi Paschal, can I ask do you have tinnitus and vertigo?

[@murphypaschal]

@Paul in Ireland Hi Paul. I have really loud tinnitus but no vertigo. Had 2 episodes of vertigo 20 years ago on two consecutive days. Since then, I've had tolerable tinnitus and slight imbalance at times. It was very manageable until 6 weeks ago when the tinnitus became very, very loud. Have bad headache as well.

[@lawnmowerdude1812]

Thanks for this. I have the same screaming pitch in my ears. I had to turn the volume all the way up to hear that pitch and it sounds like same frequency as my ringing. I have had dizziness for years but lately I also have vertigo, but just short spells, I have noticed balance issues, Had 5 right ear surgeries in the military for Clestiatoma . Plastic prosthetic in my ear for hearing bones. My sleep is terrible and fatigue is bad. Do you find yourself having alot headaches with this? I am having frequent headaches also.

[@sumitpehlwan7666]

I had vertigo attack 2 months back which was 24 hour long !! Recently i started hearing low tinnitus sound which is less than 2 second which is rare like 4 to 5 time in a week same with ear pressure !! My concerning thing is i have difficulty in low vision and sometime there is some giddiness in eyes but without any nystagmus !! I have already see 10 doctor !! No one is telling me that what problem is this !!

[@melissayoung8917]

I’m scared because I have all these symptoms. When it first started I was taken to the ER. They diagnosed me with non positional vertigo and sent me home with exercise to do Meclazine n zofran. Yet they got more a more frequent attacks. I get severe nausea with the spinning. I lay on the floor for hours. We are not talking about 1 or 2 hours. Just last mont I had a really bad episode that had me on the floor for around 8 hours. I to having ringing in both my ears and a lot pressure. I’m going to an ENT and see what they think.

[@JohnBanks1978]

Jesus - please take care of yourself. Its an awful condition, I know what you are going through. Rest up, take care and get a proper diagnosis.

[@khaledjay197]

You started with your wright ear then how long it takes you to see symptoms on your left ear

[@JohnBanks1978]

Several years mate. About 10 years or so

[@paul32596]

I have it in both ears

[@marilynjuengling5194]

There is light at the end of the tunnel and it’s not a train….

[@paul32596]

???

[@TonyTheNerd]

Ah ha, my tinnitus is at the same frequency as yours Bro

[@gracekerwin9033]

My husband has Meniers,it would be helpfull if you had subtitles as he is very deaf.

[@user-br8rr4gj1h]

Hi could you please tell me what operation you had as I have vertigo and nausea my attacks have been more frequent. Thinking of having surgery but not sure if it will work and as you know it’s very expensive, need advice if the surgery you had helped with the vertigo and nausea the tinatus I can live with thanks

[@JohnBanks1978]

I had grommets inserted for pressure relief. I was referred to an ENT who advised the operation. Very quick, but quite uncomfortable. I'm also on Betahistine Dyhydrochloride tablets 3 x per day. What has your ENT said?

[@josiegalvin]

Thank you very much I've had ear trouble for years I think I need to see someone in e n t are on tablets but not helping 😊

[@JohnBanks1978]

Yes mate - get seen by a qualified ENT. They really can help

[@ChronicallyT1Karen]

Iv been diagnosed just over a year now and after 5 drops we decided to give the intratympanic steroids a go! Iv had 2 so far

[@JohnBanks1978]

Sorry to hear that. How have the steriods been?

[@ChronicallyT1Karen]

@@JohnBanks1978 the first injection I was symptom free totally for 12 weeks then I had a drop attack late September so my specialist saw me and decided to try another one, had it done in November and I had another drop attack 12 days later!! I’m due back in clinic around feb-March time to il see what he suggests next

[@keitymarley733]

My sister is 32 years old and she has suffered from meniere disease for years and she always complains to me that I had to bought her Dr Madida herbs I saw on KZbin and she is telling me last month that she is cured completely and don’t long have the symptoms like vertigo or dizziness, feeling of fullness in the ear or ringing, hearing loss, imbalance, motion sickness, nausea, or nystagmus

[@mr.perfect3815]

Sir I am just 20 and having symptoms including ear pain. Will I be a warrior and achiever of my goals? Can I still do my studies? Will I be better again? Please reply!

[@JohnBanks1978]

Hey man, yes you will. I'm 44 now, some days are worse than others. Currently I am going through a bad phase of Tinnitus but I am carrying on! Also, medical science is evolving all the time. We hope one day for a cure.

[@sugumarkarthikeyan9030]

Mam myself sugumar i am from tamilnadu.. I am not a medical student but i have a dbt ..6months before I was diagnosed with BPPV after that I have little balance issues.. i dnt have vertigo after that .. but little dizzy feeling there.. yesterday I took PTA .. my hearing is very good .. now I am having ear clogging sensation mam.. ear fullness is a symptom of menieres. I am little bit frustrated mam.. other than that I don't have tinnitus, rotary vertigo, and good hearing ... Pls tell me how ear fullness or clogging sensation feel.... That sensation come from inside ear or not.. i m having that sensation under my pinna mam. Not deep inside .. pls clarify me mam.. very useful for me . ... Pls reply me mam..

[@jodylegrand6624]

I have these symptoms. No spinning but the spells seem that The floor is pulling away. On a very long waiting list for an ent. The head pressure and plugged ears, tinnitus is almost constant. Spouse thinks Its nonsense. I don’t know why this suddenly happened. To have a clear head was so taken for granted. 😭

[@JohnBanks1978]

I can relate to all of what you have said. Hope you get some answers from your ENT. I appreciate the wait too - nightmare, I went private for my consultations in the end. Best of luck!

[@vicvic1892]

Hi, I know you commented a year ago but was wondering if you could tell me more about the floor pulling away comment??? I have had TINNITUS now for nearly 2.5 years along with blocked crackling ears and I also feel like floor is moving when I look down. Mainly happens when I stop walking and look down. Have been to ENTs and they ruled out menieres but I'm not convinced. Hope your symptoms have improved. I'm living a nightmare.

[@paul32596]

Have u get it in both ears

[@JohnBanks1978]

I have tinnitus now in both yes. My balance and general vertigo have improved lately. I have a strict diet now which includes zero alcohol which may have made the difference. But, the ringing is constant, 24/7. How have you been coping with it?

[@paul32596]

@@JohnBanks1978 yes I have menires am not coping very well is there surgery to stop the attacks

[@JohnBanks1978]

@@paul32596 Please seek professional help. Have you spoke with your ENT? I have had multiple grommet surgeries which helped a little. I was then due another but my doctor decided against it as it was too invasive. He made the right call and diet and lifestyle changes made a huge difference for me. But, we are all different so we must seek professional help as what may help someone may not help everyone.

[@paul32596]

@@JohnBanks1978 can you tell me what diet is ?

[@rafazerbin3460]

Hi John, I have MD for 15 years but I have just discovered that 2 years ago, before I didn’t realise it was linked to my diet or any disease, i thought it was because my lifestyle and working routines. The vertigo symptoms now are very controlled but I’ve just started from last year with Tinnitus, it’s not like your level but it’s annoyed me to much because I feel that I am not hearing as before and it doesn’t stop for now. My first symptoms of Tinnitus was just for one month but now it has been two months already and nothing stop it, I am really worried that it may be forever as yours. About the diet, I can tell you for sure the symptoms increase when I have too much caffeine, sweets and salted foods. Thanks

[@marianlyons5377]

Hi, What test did the ENT do to diagnose Meniere's ? Thanks

[@JohnBanks1978]

I had brain scans, hearing tests, balance tests for several months. Quite a drawn-out process but eventually I got the diagnosis which meant I got on some meda which worked well.

[@marianlyons5377]

@@JohnBanks1978 Thanks for the info John

[@thuff86]

Bad disease. I have it so bad i cannot function hardly.

[@JohnBanks1978]

I understand mate. Its a totally awful disease. I wouldn't wish it on my worst enemy. Take care mate, look after yourself.

[@Jattz89]

Does anyones vertigo or pressure in ear flare from intense exercise? Whenever im doing burpees or med ball slams I get dizzines deafness and ringing/pressure in my ear. Docotors also told me a couple years ago that it could be Menieres. I do get the occasional dizziness outside of workouts, but, doing anytype of elevation change exercise instantly flares it

[@roshinisiddiqua3858]

Im in 30 age and i get meniere disease now i sometimes hear that sound not everytime. My main problem i cant do anything related to work. I feel depressed. I do no who to ask about alternative solution to do my daily activities. I have neck and back head pain when i strain myself. Please help if you know any solution. I ask ENT doctor they said if you have dizziness take tablet, avoid sodium and do exercise that's all .

[@JohnBanks1978]

My advice would definitely be to see another ENT. If you are not happy with your diagnosis then its always best to get a 2nd opinion. I hope it works out for you mate!

[@christbuilds7409]

I always here the ocean and the low sodium diet does nothing, it's like you said one day at a time, I always try to do what I can on a good day because tomorrow might suck!, But I will say Valium does help relieve the vertigo but sometimes you still have the unsteady off balance feeling even the day after an attack

[@JohnBanks1978]

Yeah, know what you mean about the Vallium. I used to take that!

[@christbuilds7409]

@@JohnBanks1978 why did you stop the Valium?

[@JohnBanks1978]

@@christbuilds7409 things improved 👌

[@keitymarley733]

‘’My sister is 32 years old and she has suffered from meniere disease for years and she always complains to me that I had to bought her Dr Madida herbs I saw on KZbin and she is telling me last month that she is cured completely and don’t long have the symptoms like vertigo or dizziness, feeling of fullness in the ear or ringing, hearing loss, imbalance, motion sickness, nausea, or nystagmus’’…

[@kazfor3769]

I've been newly diagnosed with meneieres and its so hard. I can't work due to the unpredictable attacks which are so severe I can't walk or focus my vision as my eyes bounce all over the place I'm sick with it too, I've had tinnitus since I was a child so I'm used to it but not being able to work and rarely leave my house as I feel so unsafe incase I have an attack as I can't walk or focus its unsafe, not being able to work or leave the house is so hard to come to terms with. I wish there was some way I could work again and safely leave my house. Any ideas how to cope if I have a severe attack in public? It would be so unsafe if it happened, not being able to focus or walk suddenly, with the world spinning.

[@JohnBanks1978]

Hi Kaz, sorry to hear about your diagnosis. Its a very hard condition to live with. I spent a long time not really going out on my own, thankfully now I feel more comfortable in doing so. I hope you find a solution and your Meniere's gets easier as time goes on. All the very best and thank you for your comment.

[@kazfor3769]

@John Banks thankyou for your reply, I hope to be able to leave the house more comfortably again one day, at the moment I hardly leave the house at all!!!! The thought of having an attack in public scares me and I would not know what to do or how to handle it, but I have just joined the meneries society here in the UK and hope to get some help and support from them we will see, hoping to work again one day, not working makes me feel very guilty and weighs on me but this condition is very disabling as you well know, hopefully there is an answer out there somewhere.

[@user-ph2bz6us6m]

Would a chiropractor help?

[@khaledjay197]

Are you unilateral or bilateral

[@peytoncavanaugh8327]

Hey John, I’m 21 and I’ve just been diagnosed with MD I was wondering if you had any advice for me about living day to day. I moved to California and wanted to try surfing however the thought of being under water and getting an attack scares me. Are there any activities you have found to be triggers for your MD?

[@JohnBanks1978]

I was advised not to get water in my ears for several years. Since then it's subsided and I'm fine now but I don't do any underwater activities so can't be sure really. Just be careful. Sudden movements throw me off, anything spinning is out of the question. Rollercoasters etc are a complete no no.. I hope you find peace with your condition and its not too bad for you mate.

[@funnymakerboy4199]

😭😭😭😭😅