I just feel the need to share this because this situation aggravated me so much, so for the past year I've been trying to get a referral from my doctor to see an ENT after the hospital suggested my symptoms look like Menieres. Which I agree, after researching this condition i have pretty much every single symptoms they list but my doctor (Canadian healthcare) is not very knowledgeable about vertigo and is convinced it's a mental issue but referred me to a physiotherapist just to humor me, but the exercises they taught me don't do much against my attacks. So I recently hit a breaking point and decided to seek help at a new clinic to try and get an ENT referral and they proceeded to tell me that my symptoms of tinnitus, hearing loss, and head spinning vertigo, were signs pointing AGAINST menieres. Does anyone know what to do in this situation?? I just want a diagnosis but everyone is treating me like I'm crazy

So my partner asked me a couple of days ago if I would want to go to Italy and I can’t say no so I said yes 😳 (hoping to get engaged soon or over the summer)

This is in the summer so I have plenty of time to prepare! I want the menieres under control and I want to be prepared for a long flight and all of that.

Drop any travel tips below! What happens if I get sick in another country! I’m so worried but time to start preparing.

Having meniere's for more than a decade but one thing I've noticed for the past few years is that my symptoms are aggravated if sleep facing my affected side for a few hours. I noticed this once I started writing down everything, this was common in all my attacks. Any idea? Or similar experience?

Diagnosed with MD about 15 yrs ago; aside from ongoing ear fullness and tinnitus, it wasn’t too challenging - I’d get vertigo maybe once every 2 yrs. Things changed suddenly - I’ve had 8 debilitating vertigo attacks in the past 4 weeks, and started getting vestibular migraines for the first time. (Had a brain MRI yesterday and awaiting assessment from my ENT and neurologist.)

My ENT prescribed prescription strength ibuprofen (600mg/tablet), which isn’t cutting it - migraines last for 6 hrs or longer and it just sucks. For those with vestibular migraines, what prescription meds do you find most effective?

Anyone else get crazy vertigo spells while pregnant? I’m still in my first trimester (like legit barely pregnant) and I’ve been having spurts of dizziness. I’ve had my Meniere’s under control for about a year now and now all of the sudden I’ve had to go back to laying down because I’m so dizzy. I’m slightly terrified that it’s going to get worse the further I go into this pregnancy.

Well, my long journey of issues has landed me here. Let me start off by saying:

I (29m) began dealing with tinnitus about 3 years ago. I'm a road construction worker who is around heavy equiptment all day, so I thought it was normal. Started wearing proper ppe and it seemed to keep it at bay.

In January of 2023 I started having serious panic attacks. I've been to the ER a total of 27 times since then. I've been checked out by virtually every specialist that I can find. All tests point to me being a healthy (albeit, slightly overweight) man.

Now, to the reason I'm posting in this sub reddit.

About 3 weeks ago I had a crazy experience while sitting on the toilet. It felt like my body was doing twisty somersaults while sitting down. I dropped to all fours to steady myself, while yelling out to my wife to call 911 because i thought i was having a stroke. She opened the door and looked at me to tell me that I was okay (she does this when she believes I'm having a panic attack)

The thing is, when she said that, the feeling completely went away. I stood up, jumped in the shower amd continued my day.

Fast forward to today. I have been feeling "off" for a few days. Almost describe it as a giddiness. Almost like being dizzy, without actually feeling dizzy. Then out of nowhere while at work, I had another vertigo attack. I had to drop to all 4s to steady myself. About 20 seconds later I was able to stand up. I still felt dizzy (about a 3 out of 10) for the next 30 minutes or so.

I'm not sure what to do. I have had multiple ct brain scans, regular neurology appts. Even an mri in April of 2023. I have an mri scheduled on Monday of next week, so hopefully that will remain clear. I also have a follow up with my audiologist and ent in December.

The real kicker is I have SEVERE health anxiety. It's been a thorn in my side since January of 2023. So part of me wants to believe this is a symptom of anxiety, but the other part tells me that I'm dying.

Sorry to blast you all with this wall of text, just wondering if anyone else has gone through anything like this.

Sincerely, A scared construction worker.

After 4 months without a vertigo attack and 3 1/2 of no real symptoms (apart from the long-chronic tinnitus) I had an attack on Monday morning after a week of low tone hearing loss in my right ear, distortion, fatigue etc. The attack was short--about 3 hours, maybe because of early intervention with meclazine and ondansetron. But the afternoon, I felt great. My ears were clear. Same the following day. Today my right ear feels off again, fatigue, etc. So I am getting religion again about diet. The thing is, over the summer I didn't keep a very low sodium diet. I have cut out the real offenders like potato or tortilla chips. But I haven't been rationing my sodium or keeping it consciously to a gram or two a day. I eat pretty well anyway--very little preprepared food. But not consciously low sodium. Based on my experience over the summer, I had concluded that sodium was not a trigger for me (unlike dehydration and stress). Am I kidding myself? Are any of you not triggered by sodium?

And a final question. Is it true that salt is only 40% sodium, so that a gram of salt is only .4 g of sodium?

I play an mmorpg and I have been in our guild for awhile. This girl has told us all she has Meniere's disease. Which from the amount of medical experience I've had has always had mostly to do with the ear, fluid in it, dizziness. She was dating one of the members who lives on the other side of the world and is younger then her.

She would tell everyone that her symptoms where so bad that she would pass out and she would forget who people were. She would say I don't know who you are but she would be on the game and do everything that she would normally do. And some of the things she'd be doing would not be simple tasks. Literally the only thing that would be different is she would be telling people she has no idea who they are. Then in a random amount of time she would magically remember everything. The amount of time from what others have said is different depending on how much others pay attention to her. A few would stay up with her for long periods of time to make sure she'd be ok with her.

I asked her if she had tried any of the treatment options because they could help. She avoided the subject. I was told by others that she always avoids that question. She would ghost her boyfriend for days sometime, worrying him sick if she was ok. But then when she would come back on she would act like it was no big deal. Her behavior screamed I love attention, but she would never admit it.

One day after some annoyance due to her behavior, I met up with someone who had known her in the past. They gave proof that she was lying about everything. She would ha e people sitting up with her worrying, while she was actually sleeping. She would only forget certain people's names and it would usually be who ever gave her more attention. She would lie and manipulate. This information and more was given to her boyfriend. He confronted her about it in a discord message. She didn't know who he was. Said she never met him or heard of him in her life. It hurt him.

I confronted her the other day for what she had done. She tried to play it off that I don't know what her medical records say so everyone doesn't know what they're talking about with my memory. She still denies it.

Sorry this was so long. I want to console my friend who was hurt. I know more about the ear part of the disease. I I have not heard much if any information about memory issues with it. So I'm wondering based off what I gave. Does it sound like she has memory issues? Or is she completely playing everyone?

My right ear is the bad ear and I've been using headphones to listen to vestibular healing "music" when I feel an episode coming on. I don't know if it really helps but I think it does...

Regardless, my left ear, which is not affected (✊️🪵) is getting blasted with loud music.

I can't find anything and I even searched here. Does anyone know of wireless headphones that the balance can be adjusted?

Thanks!

Finally saw a good otolaryngologist today. History of Eustacian tube dysfunction until 2 years ago the following began.

my symptoms are intermittent ear fullness and pressure with moderate pain, permanent tinnitus that is variable day to day but mostly tolerable, some dizziness while sitting but mainly balance issues and tilting feeling when walking or bending, dizziness and fullness triggered by loud sounds or low frequency sounds. brain fog and fatigue (possibly just due to the mental distress of symptoms), fortunately no hearing loss beyond some slight dips that are not uncommon for my age occasionally I get muffled for a few hours or days when the pressure feeling is on the higher end.

He has ordered an MRI with and without contrast, wants me to try Nortryptylin to rule out vestibular migraines, possibly see rheumatology for blood tests to rule out autoimmune causes.

I guess I'm wondering what you all more experienced people think about this. Will the MRI show if I have hydrops? is that something you have all done? I'm terrified the loudness of the machine with my extreme sound sensitivity and also scared of reacting to the contrast as I tend to get side effects easily from meds.

Hey! Just had my three month check in after antivirals my hearing improved in my left ear ! I am at a normal hearing range (it was before but even improved within that range) . I haven’t had vertigo since starting so it’s a win win situation.

The change he made this time is he wanted me to start magnesium twice a day. He said 500 mg twice a day. So I am going to start this shortly.

I wanted to share the magnesium on here in case anyone else wanted to talk to their doctor about it. I REALLY trust my doctor. He is the man. So I will share his wealth of knowledge which at this point is magnesium and antivirals.

Happy Halloween also to those who celebrate. I am dressing up as a female buzz lightyear.

Does anyone need higher dosage like 48mg for it to work? I have been taking it for months and looks like my tinnitus only subsides a bit after taking it then it comes back in a few hours? Looks like I actually need to up the dosage. But I was taking half of what was recommended admittedly

Have any of you that are hard of hearing learned sign language to cope with that limitation? Do you have any suggestions for how to learn? I still have good hearing in one ear, but I keep thinking it might be a good idea to learn if I should ever need it.

Today is my 5th PT session and each time I go the environment gets crazier…. Today Im working on looking back and forth at a letter on 2 stickies as Im walking and struggling something terrible and this woman WHO IS NOT EVEN A PATIENT keeps walking in front of me as she is talking on her freaking cellphone … Which screws me up … I said to one of the PTs it would be nice if non patients didn’t walk in front of me “She did a low Laugh” and then they had a patient who had her 6 month old baby who was crying and then she put him in his car seat right where Im trying to walk …. Every time I go non-patients are walking around on the PT floor ….Im ready to just leave.

Hi all,

I've been diagnosed with MD for about 2 years. At first the dizziness was terrible, but now for some reason I have not been feeling dizzy/vertigo very often - what a miracle! However, I am still struggling with hearing loss in my left ear.

I am thinking about going in for an evaluation for hearing aids. I'm curious if anyone else has gotten them. I'm worried that because my hearing does tend to fluctuate with the MD, that getting hearing aids adjusted right would be tricky. I also feel silly, because I know logically that there's no reason at all to be embarrassed about getting an accessibility device for my disability - somehow, I just feel really embarrassed! I feel like people will make fun of me for needing a hearing aid, which is supposed to be just something for old people, while I'm only 30 yo. And I also am afraid people will think that it's somehow my "fault", like that I listened to too much rock music or talked too loud and caused my own hearing damage - even though I really believe that's not true, it's just my disease, which I didn't choose to have! I'm also really worried about the hearing aid being uncomfortable, and also how it would work with wearing headphones, which I do a lot at my job.

Does anyone have any advice?

I work part-time like 2-3 days a week. Of course one of the few days I work I got vertigo the a few hours before and had to call out. It lasted 3 hours and now I’m able to sit up but so nauseas and sickly. I hate that this disease makes me unreliable. Like at least if someone is feeling sick they can try to get coverage the night before, but my attacks come on so suddenly so I don’t have time to find coverage. I wanted to be full-time but I doubt they will give me that position since I can’t even come in to all my part-time shifts.😔 and now I’m gonna have to get lectured about it.

I feel guilty for not going in even though it is out of my control. I feel so defeated and hopeless.

Anyone think it's possible I could have gotten menieres after my wisdom teeth surgery my symptoms started 2 days after my surgery and the dentist who operated on me was infamous for having a heavy set hand

So I am bilateral MD and have been dealing with fluctuating hearing for last 6 months. I was trying all natural means but it was still not getting me 100% back to where I was. Rather last 2 months it’s been bad. More bad days than good days. Finally I gave in and talked to my ENT specialist who did my hearing test and that day due to panic attack my hearing was the worst. He said let’s start with 30 mg a day / 5 day prednisone course.

Day 1: I already feel close to my 100% hearing strength pre-6 month when this time it started.

Question to all the fellow warriors - how can we get the same outcome naturally? I know steroids have a temporary effect on our body And we cannot be on it forever.

I don’t know why I’d never know it before but bright lights can trigger Menieres spells? I always noticed light made my dizziness worse but i do believe bright lights have triggered the run of spells I had last week.

I bought sunglasses (never been much of a sunglasses guy before, they don’t match my face idk lol) but I’m curious if anyone has purchase indoor sun glasses with weaker tent or ones that block certain colors and if said glasses help you? I’m still feeling off since my last spell Thursday morning and bright lights make me feel worse. And a problem with that is the lights at work are very bright.

Any of you have sleep apnea and MD and did treating it help?

I've made a Discord server for those that wish to use it. It's for supporting each other, chatting and sharing our experiences without judgement. Feel free to join!

https://discord.gg/6Z3K5YZJXS

I do not have meniere's disease, however my mom does. She has been suffering with an episode for a couple weeks now and I was just wondering if anyone has some tips, remedies, or ideas of things to help her. Thank you!

I just experienced my second violent vertigo attack. Vomiting 3 hours straight and dizziness for 7 hours. During the attack, I cannot get any medicine down or sit up on my own. Has anyone found anything that helps shorten or alleviate the vertigo when in an attack? I appreciate any help/advice you can give. ❤️‍🩹

Hi all, I was diagnosed with Psoriatic Arthritis (PsA) and Psoriasis a few months ago. They are both autoimmune systemic conditions that impact not only the joints and skin but also other organs and systems, including the inner ear.

After my 1st PsA flare, I started getting intermittent tinnitus and clogged hearing that would last ~30 sec in my right ear every while and then; specially If I'm stressed or bending my neck to the side

Progressively I started feeling disequilibrium / loss of balance / dizziness when I stand up or when I'm in a car, without any associated hearing symptoms.

4 weeks ago, I had my first 'full blown' episode: ear fullness/pressure, pain and itchiness, muffled hearing and loss of balance / dizziness. It wasn't a vertigo attack per say but it surely occured along with the ear symptoms. Shortly after, I started having tension headaches (on the two sides and back of my head), tender painful spots around my ears and in various areas of my head (if i touch or press) + a buzzing low volume tinnitus that I feel in my head at night which I'm not sure if it's real or due to my anxiety.

I was put on oral steroids for a week which seemed to resolve the imbalance (it took a few weeks) and tinnitus but not the ear pressure & pain (i literally feel my ears drums are painful). I've been taking Betahistine 16mg x 3 times a day for 4 weeks. I noticed 'some' improvement but my ears are still somehow clogged / I feel as if my hearing is masked and my ears are now sensitive to noises and sharp sounds!

The initial audiogram immediately after the 1st episode showed very mild sensorineural hearing loss in mid frequencies (in both ears). I did a quick test today at an audiologist and it showed my hearing is within normal range (better than the 1st audiogram even), so I reckon the steroids have helped if there was indeed any sudden hearing loss.

Given my symptoms, My ENT suspects my symptoms are 30% due to Meniere's syndrome, 50% due to stress and lack of sleep and 20% unknown.

My neurologist thinks I have "serotonin deficiency" and prescribed me an antidepressant to treat me neurochemically.

Any idea what's going on?

I personally believe this is all due to the psoriatic arthritis causing inflammation in my neck and head and impacting my inner ear but I can't prove it. Any thoughts or insights would be appreciated!

Is there anyone with Menieres and a systemic autoimmune condition that triggers it? I have both Psoriatic Arthritis and Psoriasis. Wondering if the symptoms would fluctuate based on the inflammation in the body caused by the autoimmune condition

Out for a walk he went, for he lived near the main city park. It was a fine Saturday afternoon, a cool 29 degrees in the Caribbean weather. Midway through the walk, he decided to turn back. The time was 6:10 p.m., and sunset was around 6:30 p.m. The walk home would take 20 minutes. As he turned toward home, walking along the trails in the park, he looked down, trying to tie his belt. For a good 30 seconds, he walked while fumbling with a knot. Then, as he raised his head, the vertigo struck.

Meniere's vertigo—not your average "oh, I'm dizzy" feeling when people change position quickly. This was the uncontrollable spinning of the outside world and his mind. Balance was lost. Anxiety through the roof. He thought, I'm 20 minutes from home, but I have to sit. I'm having a vertigo attack, now? He told himself, C'mon man, seriously? He muttered aloud, “Fuck.” It was getting dark; he had to get up and walk.

Walking felt like navigating a tunnel, surfing with no balance, tunnel vision at max. He was off-balance, struggling to put one step ahead of the other. What do I do? he thought. He had experienced vertigo plenty of times before, but never when he was out for a walk. And nobody who could help would arrive in under 30 minutes. Every minute was crucial. Let me keep walking. Fuck it, he decided. The nausea compounding on each step. He trusted that the 100 mg of Dramamine he had taken earlier—a precaution he routinely took on symptom-heavy days—would keep the nausea at bay. Let me power through this vertigo spell. The senses in survival mode. Pure willpower got him through the now darkening park, stumbling with every little branch, anxiety raising the paranoia.

Finally, he reached the street. Just to cross the small brick border between the park and the sidewalk, he had to use both hands, sit down, look straight ahead, and trust his body to get him across. Cars here flew by at 60–80 km per hour, and the only way to cross was to wait until no cars were coming because, classically, no rules were followed in these streets; pedestrians and crosswalks be damned. He couldn't turn his head without risking his balance, maybe even falling or throwing up. The only way to turn was to turn his entire body in the direction he wanted to go.

Finally, he crossed the street. The moment he'd dreamed of 20 minutes earlier was here: he was on his block. He said a quick hello to the guard but couldn’t make conversation; he was sure the guard sensed something was wrong. He got into the elevator, and finally, home. He proceeded to get water, took some diazepam, turned on the AC, and lay down quickly.

For the next 45 minutes, he couldn’t keep his eyes open, yet neither could he keep them shut. Slowly but surely, it subsided, and he drifted into sleep.

He woke up and decided to write this down because the experience was so intense he had to put it into words.

All I wanted was to go for a walk. Sometimes, the simplest things are the most meaningful. Chronic illnesses truly change people’s lives.

Thanks for reading :)

Edit: thank you for the words everybody. Some peace can be found in that we can all relate to one another, doesn't matter age or country.

Has anyone ever used CBD or anything like that and found success with it?

I’m seeing a lot of angst on the Meniere’s disease support groups I’m active on. This is natural and to be expected. Meniere’s sufferers frequently have a quality of life on par with a terminal cancer patient. A study conducted in 2000 concluded:

“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”

newswise.com

That is how bad Meniere’s can be. Of course new sufferers are overwhelmed with angst about a lifetime dealing with these symptoms. Who wouldn’t be? Additionally, a lot of young people who have had complications from COVID infection are exhibiting vestibular problems and they are really worried about becoming me or one of those other old people who suffer with Meniere’s disease and have no life.

First off, I do have a life, thank you very much. Secondly, only 10-25% of the people who exhibit early symptoms of cochlear hydrops go on to develop the full range of Meniere’s symptoms later in life (this is according to German data that tracks instances of cochlear hydrops and Meniere’s differently than we track it in the US) so there is no certainty about having to endure a lifetime of vertigo in the near future.

This all started for me when I was 21. I’m now disabled and sixty, but for a grand moment of about twenty years there, I worked my way up into an architecture license and I thought I had a promising career ahead of me.

2015/03/a-meneireian-architecture-story

…but (and this is the important part, so pay attention) I had ignored my symptoms. I buried them under tons of supplements and allergy medications, and I pretended that I was normal even though I barely slept because of the nightmares that plagued me, memories that I had buried along with my symptoms, the results of a childhood marred by trauma and guilt that wasn’t mine to carry.

Eventually that house of cards came crashing down, just like every one of them does. I finally had to admit that I wasn’t normal, wasn’t a man, was pretending about everything. I had to start trying to address my health issues instead of throwing coping strategies at them and whistling past the graveyard; because those health issues were going to kill me if I didn’t take them seriously now.

So I did, and it’s been hard, but this isn’t the road that any other sufferer has to travel. It’s my road and I set off on it a long, long time ago.

I may be forcing a reinvention of myself at the age of sixty, but you young, newly diagnosed people, you can just develop yourselves knowing what your limitations are, the way that I should have done when I was your age. The old people suffering are the lessons you should learn from, not the terrors of your future. Your future will be different because you are going to be better informed than we were. Let me walk you through how we’ll do this, together.

Get your sleep. Good sleep is the best gift you can give yourself. This is the first point because good sleep is the first thing we sacrifice when we’re trying to cram more things into our busy lives. I slept less than four hours a night for most of my adult life. Don’t do that. Don’t skimp on sleep. Every hour of sleep you lose is further ruining your health, making you more prone to problems like diabetes and, yes, vestibular issues. So get as much sleep as your body needs.

Take joy in the good days when they come. Don’t be too busy to appreciate a beautiful moment. Having that joy to look back on makes the bad days that much more bearable when the bad days come; and they will and do come for everybody, even those people with perfect health.

Never confuse a coping strategy with a real treatment. They do different things for different reasons. Drop the coping strategies when they fail, continue the treatments when they work. In the heat of the moment, when you are sure that every single thing you do is critical to avoiding that next vertigo spell, it’s hard to step back and look from the outside at what you are doing. But I’m telling you, as someone who’s been there, that’s what you have to do. Stop. Step back. Reassess why you do what you do. Keep the treatments, skip the coping strategies.

Finally, forgive yourself. (I don’t have a link for this one. Still working on forgiveness) You are only human. There are no superheroes, just fallible people pretending to be on top of everything all the time. Even Taylor Swift has to eat and sleep and breathe and do all the other things that we mere mortals have to do. No one is more competent than you are on your best day; which is a scary thought to contemplate.

You can thank me later when you get to be my age and don’t suffer from weekly crippling vertigo; and even if you do have to deal with that, you’ll have all those beautiful moments to look back on. Every single sunrise is one of a kind. Every single sunset is the only time the sun sets exactly like that. Cherish them all when you can.

(first published here: https://ranthonyings.com/2024/02/a-bright-shining-future-even-with-vestibular-issues/ )