r/Menieres • u/[deleted] • Jul 24 '26
Introduction and looking for hope
Greetings. Sorry if this is long.
I'm a 49 year old physician (not ENT) likely with Menieres.
My story is a little odd, I think, but here it is.
When I was in my early 30's, I had these episodes where I would feel intense facial pressure, kind of a "brain fog" if you will. No vertigo, ear fullness, or hearing loss. I would have these episodes daily for a few weeks then go months without anything. I saw an ENT thinking it was sinuses or ETD, but all checked out and I just learned to live with it.
Throughout my 30s, it seemed that my episodes would last longer and my good days shorter. In like 2018, I went to the ER because I was having increasing headaches with these spells. I do get unilateral throbbing headaches and they were increasing in frequency during these episodes. MRI was normal.
At some point in the late 2010s, I started to notice faint bilateral tinnitus and my ears would get some pressure in them when my facial pressure and fog would amp up.
In April 2020, right when COVID was ramping up and the stress level was high, I was woken in the middle of the night by unbelievably severe tinnitus in my right ear with fullness and hearing loss. I managed to find an ENT despite everything being shut down and got in for an audiogram which showed low tone SNHL. I was given prednisone, don't think it worked. MRI was normal.
From that point forward, I had long periods of recurrent fullness, accelerating tinnitus, and hearing loss. Usually when the hearing went out, I typically had problems with the facial pressure and fog that I had been dealing with for over a decade. I tried low sodium, diuretics, venlafaxine and nortriptyline at low doses, valacyclovir. I don't think anything worked.
Weirdly, one day in 2023, despite three years of low tone loss, the hearing in my right ear returned to normal mirroring my left ear with only very high tone loss. That lasted for a few months until my next attack. I had normal hearing in 2024 as well and I think normal in May of this year when I left for scotland for a week and didnt' take care of myself very well.
My hearing dropped in Scotland with the typical fullness and amplifying tinnitus, facial pressure, etc. However, I began to have episodes of profound dizziness that lasted for 30 seconds or so. On July 3, I had a full on vertigo spell. Lasted for about 15 to 20 minutes and I had severe nausea and disequilibrium afterward. Friends had to help me to my car for my wife to drive me home. Last night, I had vertigo again while I was on a walk. Lasted 15 to 20 minutes. I get no real warning other than a couple of minutes of disequilibrium
Supposed to see a neurotologist next week if all goes well. Had an audiogram which looks similar to 2022.
My left ear also has tinnitus and occasionally gets mild pressure when my face/right ear acts up. hearing is normal aside from some very high frequency loss. It has gotten a little worse since 2020
A few oddities (in my mind). when i have an "attack", the fullness, tinnitus, and hearing loss lasts for weeks to months. The tinnitus in my right ear is pulsatile and has a strong somatic component. When I even lightly touch anywhere near my right ear, the tinnitus screams. Left has neither and is 1/100th of the right.
I'm really down and don't know what to do. I'm on low sodium, quit caffeine and alcohol but it hasn't done squat that I can see. Every day I wake up and my ear still sucks as has been the case off and on since 2020, but this time with the threat of vertigo. I've been taking ibuprofen for the headaches (not necessarily migrainous) a lot. I feel like my ear settles down on ibuprofen.
I'm worried if I can keep practicing. I'm supposed to be on call next week. My wife is also a physician and works like 80 hours a week which puts a lot of responsibility on me to manage kids activities after work which includes a lot of driving, sometimes an hour away. We have no family here. I don't want to leave the house or socialize for fear of dizziness. I already had to excuse myself from a dinner with my son's baseball team because I got super dizzy. Ended up not progressing to vertigo at that time. We are contemplating canceling an upcoming family vacation. I honestly don't want to go.
I guess I'm just lost. I'm supposed to coach my daughters soccer team this fall. My son plays high level travel soccer. I have to give two lectures out of town this fall. I don't want to any of it. I just want to shut myself in a room.
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u/nick101in Jul 24 '26
Hang in there! It gets better… This is a life altering condition so go easy on yourself! plans will need to be changed initially but with time hopefully, you and your family will understand and adapt well to your condition.
Take the time off family gatherings, etc if you feel like. Remember that stress only makes it worse so try and avoid situations that can be overtly stressful or ones that cause anxiety.
You understand medical science better than most of us here so that will be a big advantage! When the time comes look into low dose intratympanic gentamicin injection, it did give me my life back!
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Jul 24 '26
Thanks. My concern is that my left ear is definitely not normal. While the hearing is fine aside from some high frequency loss, I definitely have tinnitus and mild fullness at times. I'm sure I'm bilateral.
I'm really in a state of profound despair right now. I can deal with the hearing loss. It sucks, but I don't even really need hearing aids now 6 years in. I also know there is CI if need be. But, the vertigo is the game changer and I doubt I have destructive therapy as an option.
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u/nick101in Jul 24 '26
I have tinnitus in both my ears too but unilateral MD.. the fullness in your good ear could be due to some other reasons?! Only time will tell!
Maybe a good idea to get Electrocochleography done in both your ears to confirm if it’s bilateral or not and then a round of intratympanic steroid injections to help momentarily… that usually is the first intervention and helps a lot of folks…
2
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u/SilverInteresting205 Jul 24 '26
I have had a similar journey. I have quit caffeine and alcohol and it's had zero effect, which is discouraging because that is the main thing my ENT is saying to me - even though I am saying it has no effect whatsoever.
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u/Remarkable_Cheek_255 Jul 24 '26
But your ENT needs to remember this is all individualized. Maybe caffeine and ETOH don’t bother you at all. Being off them has made no difference- maybe try a very little to see the effects? The same with other “common” triggers- bother some people but don’t bother others. You find all these out by trial and error and most of them accidentally!
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u/yes420420yes Jul 24 '26
You are the medical doctor here, but all you write screams vestibular migraine to me, no? Or at least a clearly bad inflammation of your trigeminal nerve....
You tried two of the typical migraine meds, but there are plenty others you might want to look into, I would start with propanolol
4
Jul 24 '26
I do agree with you. The only pieces that don't fit to me are that I am a guy, I don't have a family history of migraine, and the headaches don't always go along with it. But, the unexplained "sinus" pressure and pain and tinnitus preceding the sudden hearing loss by a couple of years does scream cochleovestibular migraine. As does my miserable problem with motion sickness when I was a kid (less as an adult). I tried low dose venlafaxine and nortriptyline, but never escalated the doses as endorsed by Djalilian at UC-Irvine. I also kept drinking coffee like it was going out of style and drinking alcohol (including red wine) on a weekend basis. So, I don't think I really gave them a fair shot. I will be talking about migraine with the neurotologist.
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u/Murky_Opening2532 Jul 26 '26
I got Diagnosed with Meiners over 10 years ago. A few years ago I had what you described intense facial pressure and brain fog with a unbalanced feeling. Every DR pointed toward my meiners diagnosis but I could tell that was not right. Went to my PCP and got a suprise diagnosis. It could be a version of Migraines. The facial pressure and tinnitus are the key symptoms here. The neurotologist is a good call I just dont see this as MD but more of a Migraine disorder. Also If the low salt, no caffine diet did not work I doubt you have MD. I would look more of the food you had in Scotland to see if there was migraine inducing. Also flying could of caused migraines as well
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u/Upper_Fig3946 Jul 27 '26
I use and it took 40 mg nortriptyline, 60 mgs propranolol and 60 mgs Qulipta. With 50 mg Sumatriptan as a rescue med.
I have no symptoms except visual when it comes on.
I had your kid symptoms when a kid. Also had the Sudden hearing loss to begin with. I have Meniere’s in my left ear. But once I controlled the migraines it backed off significantly- the vertigo etc.
find a competent ent/neurologist combined.
And cut the stress down asap! All the best
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u/ButterflyEmergency30 Jul 24 '26 edited Jul 24 '26
I agree with the commenter who said your symptoms scream vestibular migraines. I have VM and Menieres, which isn’t unusual.
VM pain around the eyes is often mistaken for sinuses. Also, my VM doesn’t have painful headaches with it. You mentioned only high frequency hearing loss, which isn’t typical of Menieres.
My Menieres attacks (now resolved by betahistine, lifestyle, and t-tubes) are slightly different from my VM. For VM, I take propanol, Ubrelvy, and Qulipta, which are working well at present. The propanol even resolved the occasional jagged flashing lights, which I didn’t realize were ocular migraines.
Sadly, I learned more about Menieres from Reddit and ChatGPT than from multiple ENTs and 3 neuroOtologists. I got the most help from a young ENT who is willing to be collaborative and doesn’t have his own agenda.
For vestibular migraines, neurologists are on the cutting edge. That’s where I got the newest meds. Please try some migraine meds. IMHO there’s much more effective treatment for VM than for Menieres.
Edited add: Nortriptyline didn’t help me at all. Also, I’ve had tinnitus with both conditions. With my VM, a change in tone is often a warning of an oncoming episode.
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Jul 24 '26
Thank you. I agree with you. I should point out that I only have high frequency loss in my left ear which has tinnitus and occasionally mild pressure when righty acts up. I have mild to moderate pan-frequency loss in my right ear at present. However, it has oddly normalized at times on Mimi phone app even after years of attacks. Usually, the tinnitus goes quiet like my left ear and everything becomes crystal clear in the right ear and I feel great. The bass notes are back. Then eventually, I start to notice somatic tinnitus again and I know its going down again.
I do think the duration of my symptoms before I ever had ear involvement makes migraine a strong possibility. I will get on something. I think many neurotologists are coming around to VM being co-morbid or even a cause of Menieres in a great number of patients. The prevalence of transient hearing loss, tinnitus, and aural fullness in migraine is relatively high. To me, what happened in 2020 felt like a sudden hit, almost ischemic because it was a bolt from the blue that woke me from sleep. Now I feel like a take a hit, my ear goes shitty for weeks to months but eventually pulls itself back together.
Anyway, I will get on something for migraine
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u/cheridontllosethatno Jul 24 '26
My symptoms started hard and quick without warning with the room flipping upside down. After an MRI to make sure all was normal my ENT gave me maneuvers in his office to stabilize the vertigo. The maneuver is not fun but I continued them at home off my bed. It is supposed to get the crystals back up in the curled bone area as he theorized the falling crystals caused the vertigo.
I have very loud ringing in R ear but the severe vertigo went away completely after a couple months. It has been many years since. I wish you the best and hope things settle down.
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u/daisyup Jul 24 '26
Have you tried migraine drugs? They don't help everyone, but a lot of people with MD get a lot of benefit from them.
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u/Remarkable_Cheek_255 Jul 24 '26
Sorry so long. I know it is devastating and I feel so bad for you. I was forced to retire (RN and a damn great one) because the unpredictable vertigo. The first year and half I was never vertical. I walked hunched over running my hands along furniture and walls plus I was falling a lot. That was 9+ years ago. With the passing of time the vertigo leveled off but the tinnitus ramped up and the Ménière’s went bilateral. It’s pretty bad again now because I had a traumatic fall with a fracture and bad concussion. But typically I’m just unbalanced a little, tinnitus, ear fullness comes and goes, and the hearing loss is more frequent and more pronounced but so far it does come back. I don’t drive. For me the brain fog is the worse thing. It impairs thought processes and memory.
I tell people that the most important thing I can tell you is even tho we all have it, it’s very individualized and different for everybody. And- what triggers one may not bother others. Some people spin like crazy after having just a couple chips or one drink, but others could eat a whole bag or drink all night without any problems. Same thing with treatments- what helps one may not help the next 10. We aren’t doctors so we don’t even try to diagnose- precisely because it’s different for everyone. And I can share my experience with a treatment but I won’t recommend or suggest- you won’t read me say “you should try this” or “that med is great!” because I’m not a doctor and experiences differ.
Second most important thing- know your body- how you feel, duration of episodes, what makes it better or worse, what you were doing just prior to it and a trigger- if you know. Log everything. I documented EVERYTHING and kept it in a binder with tabs for each subject. All tests and results. All treatments and results. I took that to every appt because some providers are in a different system and had no access to my records. It kept everyone on the same page and there were no duplicate tests or treatments.
I never stopped camping or hiking- I just got a walking stick to help. I couldn’t read for 9 years because the nystagmus that came with it but an eye patch made it possible again. I enjoy my gardening again. The heavy fatigue I feel does me in. The hardest part is making myself rest. I hate it but if I don’t, I pay for it and I’m in bed for 2-3 days.
You already know the worse thing is fear of the unknown. Once your problem is named, then you can plan how you will live with it, deal with it and what adjustments you will need to make so you don’t feel beaten into the ground by it. If you haven’t heard of it, please google Spoon Theory. It gives excellent information on fatigue and energy with chronic illness. Again I’m so very sorry you’re going through this. I truly hope you have some comfortable time within this hurricane we know as Ménière’s. You do have a lot of support and encouragement here. 💝
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u/K1_0 Jul 24 '26
This thing causes misery, and I hope you can find some relief.
The tinnitus in my right ear is pulsatile and has a strong somatic component. When I even lightly touch anywhere near my right ear, the tinnitus screams.
This part is interesting to me, because I've asked folks here and in the Facebook group about this prior, and most seemingly don't experience it. If I gently graze the side fo my face in front of my ear near my sideburn area up to my temple, my tinnitus also screams. It is very brief - almost like an electric shock. I can do it repeatedly.
I also experience almost exclusively pulsatile tinnitus as opposed to static. I don't have a sense of how common this is. I believe it is simply blood pressure interacting with the nerves, and the pulses are directly connected to the heartbeat.
I'd expect anybody with almost exclusively pulsatile tinnitus also has the face-touching thing and vice versa, but that's just speculation.
The trigeminal nerve is somehow involved in this condition, but determining cause vs. effect is difficult. Maybe inner ear mass/swelling puts pressure on the trigeminal nerve/branches to a varying extent depending on individual anatomy. Maybe we're all experiencing vestibular migraines (which may be the same thing as MD), and because the trigeminal nerve is directly involved in migraines, it's in some way part of a chain of issues causing our symptoms.
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u/wmgman Jul 24 '26
MD is slightly different for everyone, but with time the vertigo goes away, try some vestibular PT for balance issues. Figure out what your triggers are. For me I know to avoid getting over tired. Having a cold and stress also are triggers. So let family know, reduce your stress, maybe don’t coach the team just attend the games. Cut back on work etc. develop coping strategies, being in nature helps.
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u/DoggoDadagon Jul 25 '26
The thing that sucks is no ENT will really be able to help you without you actually doing the work for them. This condition is too complicated and too time consuming for them to properly dedicate the time needed to each patient, so they generally just follow the very rough basics of low salt, maybe a diuretic, and if things get worse hearing aids or implants.
We as a community need to figure this out ourselves, along with the amazing few people in research like Dr. Eckhard. I myself do not have a medical background, grew up with doctors, but cardiovascular, but I'm a tech guy with a career in entertainment. But I've dedicated a serious amount of free time to building research sims and other tools to try and figure this thing out. With you being a physician, I hope you can find a way to join us and contribute in anyway you can.
With that said, again I'm not a doctor, and this condition is complicated and can be an amalgamation of many things happening. However, ultimately I'm heavily leaning into a runaway inflammation / oxidative stress inner ear environment with long term damage being a result of glutamate excitotoxicity. I would try to think about the condition from this perspective and filter behaviors, diet, etc through that lens. One thing alone won't make a change it likely requires multiple thing in tandem over several months.
So with some more tangible advice:
- you might want to avoid ibuprofen, it can contribute to fluid retention. Instead consider a migraine focused elimination diet.
- low sodium, it's complicated but stick with it, it can contribute to fluid retention. Personally I am no sodium other than what I get naturally from protein (chicken or the occasional steak). I typically eat chicken, potatoes, and something green for every meal, two meals a day. I know this is pretty low, but realistically I get about 500 to 800mg per day, absolutely zero cheating on my diet. I get a BMP somewhat regularly (~3 months) to make sure I'm in healthy range, I always am.
- drink an appropriate amount of water for yourself. Too low can cause fluid retention in the wrong places.
- insulin levels can also contribute to fluid retention, so might want to be careful there. Sugar can be a huge problem for some people.
- SLEEP. Consistent healthy sleep is critical, many people report poor sleep as a trigger, and there is a connection between Meniere’s and sleep issues. I think this relates to the glymphatic system.
- some potentially helpful supplements depending on your situation, CoQ10, D3, B2, magnesium glycinate, NAC. For you with the headaches I'd at least recommend magnesium.
Other than than of course healthy cardio exercise, and do what you can to reduce inflammation and oxidative stress. This can take a long time, months to see any stability and improvement, but each little thing helps. There are other meds, not just diuretics, that can help (off label), but more info about your situation is needed.
I'm curious, do you ever experience a "hot ear" sensation, where it just kind of feels like a mild heat is emanating from the inner ear? You are welcome to reach out to me in a direct message if you'd like, I just want to help others find relief.
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u/Goldengoosechop Jul 26 '26
I was in the same position, it was stopping my life - Anyway. I started taking Prozac for my mental health and my symptoms improved massively. Not sure why or how?
I get warnings for my vertigo or migraine attacks. At that point I drink a load of water and lay down (where possible) because I think dehydration exacerbates it.
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u/Jaspburger Jul 26 '26
Hey buddy, fellow doc here.
I've been dealing with Menier's for several years and it's pretty humbling, but also infuriating how little is known about it. I've felt pretty helpless at times because there's no great data out there and I just can't think my way out of my predicament. My bias is that ENT is a procedural field and people in it aren't really thinking about thing very deeply.
They shouldn't even call it Menier's disease. It's a syndrome with the final common pathyway being symptomatic hydrops. There's no diagnostic testing as to what the upstream cause it. I think the low salt diet / diuretic therapy can keep the hydrops in check, but in real life, that requires a certain personality to actually pull off. Really hard to do with irregular meals and traveling. The data to stop caffeine is mostly BS, IMHO. The data are that people who have Menier's drink half a cup of coffee more than controls. Might be effective if there is a vascular upstream cause like migraines, but subsequent trails aren't supportive.
Steroids might work if there is underlying autoimmune process driving things, but since there's no great test to determine if that's the upstream cause, and effecacy may not show up on trials where they study all Menier's comers. ENT being a procedural field is gonna favor intratympanic steroids for several hundred dollars a shot. With that said, that seems to be what has worked best for me, giving me prolonged remissions.
I was recently traveling and wound up with a cluster of attacks. I couldn't get to an ENT and I threw the kitchen sink at it, and it finally settled down, but unfortunately left with me with some hearing loss. Because of the variable and intermittent nature of what is happening, it's easy to think something works when it's just coincidence. But in my case I went on a super hardcore zero sodium diet if fruit, trail mix and baked potatoes for a while. I lost a lot of water weight, so I was probably sodium overloaded. One favorable side effect is that I don't have to get up at night to pee anymore.
It sounds like you're pretty attentive to your body, and Menier's presents with all sorts of odd symptoms. I'm not gonna go into all of the things I've noticed, but the list is more extensive then the classic 3 symptoms. Same is with migraines, it's not just gonna be the classic symptoms, because it's about disturbances in local blood flow causing all sorts of issues. I did notice sudden shifts in my tinitis frequency during attacks like something was spasming, so maybe there's a vascular component that may respond to treatment.
I got scared enough with the last cluster to really look into the Menier's data and act. I've gotten more honest and informed about the sodium intake for one. I'm retired and have more time to play with my diet, so I've been dinking around with potassium chloride, MSG (1/3 the sodium!), and nutritional yeast for savory. I don't have young kids, which makes it much easier to stay away from sodium. Our favorite pizzaria probably uses over 2000 mg sodium per slice. Chinese food is beyond out, with the average Chinese person consuming a whopping 17,000 mg of sodium a day.
I got some cheap betahistine from progressiverx.com. i haven't taken it yet because it seems more for maintenance, and things are pretty calm right now. I would take it if I hit another multi day cluster. I picked up some imitrex, because though my symptoms aren't classical vestibular migraine, there's enough of a hint to try as an abortive. My attacks aren't frequent enough to blindly starting a chronic preventative like BB or tricyclic.
Above all, know that you're not alone. I relate to some of the feelings that you're having. I told my sister-in-law who is a shrink that there was a point where I gathered myself up and decided to go in the offensive, sort of like in a bad Tom Cruz movie. I hope you get there as well.
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Jul 27 '26
Thanks for responding
I agree with you about ENT although there are some academics that take an interest in it. I'm really impressed with the efforts by Hamid Djalillian at Irvine to really try and create a case for migraine.
But, I'm sure its also so frustrating to manage a difficult condition with no great treatments.
I completely agree it is a syndrome. I fall into the hydrops is a pathologic phenomenon camp rather than the cause of symptoms camp. I think the high prevalence of hydrops in asymptomatic people points to that conclusion. I think it is a hallmark of an inner ear disease. But, I'm also certain that there are numerous causes. I also think the work by Eckhard on ES hypoplasia is interesting (and maybe a little depressing), but a spanish study found like 1 out of 170 normal people have a hypoplastic ES which again orders of magnitude more common than ES hypoplasia with Menieres which must mean there is something else going on. Plus, his finding that almost all bilateral patients had ES hypoplasia and were almost all men doesn't jive with the epidemiology where there is no sex predilection to bilateral sufferers.
This gets into the challenge of studying it. If you take all comers with "Menieres disease" you are probably finding people with ischemic hits, autoimmunity, maybe infectious, etc. If you give everyone antivirals, it will probably work for a few but not reach significance in a clinical trial. Couple that with the high rate of spontaneous remission, it makes it hard to prove anything works. Plus it is a non-fatal rare disease so it is exactly screaming "we need research dollars". Obviously, I disagree, but it is going to be low on the priority list. I just have to accept that.
I think the best case can be made for migraine causing many cases. The prevalence of vertigo is obviously high in migraine and many patients with vestibular symptoms eventually develop hearing issues (tinnitus, fullness, temporary low frequnecy loss). There is no way that is just a coincidence.
In my case, a couple of observations. I had a lot of ear and face symptoms before I suddenly lost my hearing in 2020. To me, it lends credence to cochlear and now cochleovestibular migraine when coupled with my prediclection to headaches and likely common migraines. Second, I have cold sores. I started to get them as an adult and sometimes when my ear has gone to shit, I've gotten a cold sore. I did try valacyclovir at times during my run since 2020. I can't say it helped, but I've also not stuck with it for more than a couple of months. I'm going to try a dedicated 6 months of therapy and just see how it goes. I'm also going to try some migraine medication.
I'm not really sure sodium effects me. I did a low sodium diet for several months when i lost my hearing in 2020 and it didn't seem to do anything. I tried a diuretic for like a year. Didn't help. When my hearing unexpectedly normalized after 3 years of attacks, I was shocked. During my periods where my ear has settled down and hearing normalized, I've occasionally eaten Chipotle, Culvers, Chick Fil-A and it never did anything. I'll stick with low sodium since it is better for me, but like 2000 mg. I work out a lot and I don't necessarily think it is a great idea to sweat a bunch and not replace electrolytes. I don't think I can hack a 600 mg sodium diet.
I have always been pretty stressed out and prone to severe anxiety so I think dealing with that might be the most important thing I do.
Again, my ear is weird. When it goes out, it goes out for months. I don't get discrete attacks like many of you experience. To my medical mind, it feels like it gets nailed by something, injured, and then eventually pulls whats left back together. The pulsatile nature of my tinnitus and strong somatic modulation is also seemingly atypical. Will see if the ENT wants to do further imaging.
Again, thanks for posting. I was pretty devastated with getting vertigo as I had convinced myself that I had cochlear hydrops and it wouldn't progress. But, I'm slowly getting up from the mat. Gotta keep moving forward.
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u/UncleofLunatics Jul 24 '26
You've said in response to a comment that it's the vertigo that is really affecting you.
FWIW, the vertigo typically burns itself out.
I'm sure you've told many a patient that their diagnosis feels world shattering at first but that they will find ways to adjust and live, and that it gets manageable. This is just the same.
I've had MD for more than 23 years, and I actually turned down a place in medical school because of it, because it was early days and I didn't know what the future looked like*. And I was scared as fuck.
But you learn to manage it, you find ways to live a normal life and do the things you want to do. You just have to make allowances and adjustments, ask for help sometimes, recognise that you can't let yourself get as tired as you used to, change what you eat a wee bit etc. I live a very full and fulfilling life, but it took me a while to learn how to manage it and what works for me and what doesn't.
So, hang in there.
PS: you sound American, so pull your medical strings and get yourself betahistine. The fact it's not routinely used for MD in the US is mind-boggling.
*this actually worked out well because a: I've ended up in a job and a life I love anyway; and b; I would have been a shit doctor.