I feel like soon i'm dying ( No job, no money, health problems...)

Update 16/02/2025

Overall, same as yesterday but now I start to have some mild pressure/fullness that subsides then come back again and subsided again,etc.

Hope the disease is not coming back…

-Betahistine 3x 24mg
-Vinpocetin 3x10mg (back to 3)
-Lysine 6x per day ( as JoH)
-Idk if I exceeded Sodium today…(max 1500mg hope)

Love and hope to everyone!

See you tomorrow to my daily update for 17/02/2025!

 

Update 17/02/2025

As yesterday but now I start to have mild pressure/fullness that didn’t subsided+sound seems to be a bit louder or my sensitive level to some sounds is higher + i felt a bit unsteady or dizziness was a bit “higher” then usually.

Another symptom is that i sweat a bit during the night( woke up with my cloths wet/damp), idk if is because of new duvet that is extra warm.

-Betahistine 3x 24mg
-Vinpocetin 3x10mg (back to 3)
-Lysine 6x per day ( as JoH)
-Sodium(1500mg or less)

Love and hope to everyone!

See you tomorrow to my daily update for 18/02/2025!

 

Update 18/02/2025

Today just mild pressure/fullness that didn’t subside, no other symptoms.

News News news, my new Neuro-ENT did a lot of exams and test and she told me that she don’t think it’s Meniere (yuhuuu!! Me too doc, I don’t think it’s Meniere and hope not!) and she say it’s a Labyrinthitis and vestibular neuritis because under test I still have nystagmus and my lateral labyrinth is still affected on left ear but my brain compensated very well, that’s my I have a mild dizziness and nothing major.

Causa ? We don’t know yet but we are investigating to see if it’s an immune(viral?bacterial?autoimmune?) or hydrops who partly affected just the vestibular nerve for lateral labyrinth (lucky is not completely affected, hope I will regenerate some or if I am lucky, there is a small chance in a small % to completely regenerate it…so hope I am in that group of people with regeneration too not only with re rare disease..).

Ah yes, audiograme and speech recognition was perfect, very mild hearing loss on left ear high frequencies (6 and 8000hz). Strange because I have this mild fullness that make me feel like I don’t hear so good as 2-3 days ago…

What’s next?
- Another set of blood tests( already done and waiting for results, my arms are full of needle holes…)
- MRI with Hydrops protocol

-Betahistine 3x 24mg
-Vinpocetin 3x10mg (back to 3)
-Lysine 6x per day ( as JoH)
-Sodium(1500mg or less)

Love and hope to everyone!
I am one step closer to stop and solve my mystery disease!

See you tomorrow to my daily update for 19/02/2025!

 

Well, it was a bit of gap from my last update….

Shortly, my problem started again to slowly get worst and worst.

Then i did a lot more investigation which was: MRI with protocol Hydrops which came out not clear .
Result: Vestibular hydrops with saccula ( not cochlea hydrops) with blood barrier broken.

After my MRI my hearing was sooo bad in left ear, I barely could hear. I was in the range of Moderate to Severe, in just 2 days.
My ENT didn’t believe me and asked me to do another audiogram and boom, she believed me.
Prescribed prednisolone high dose for 10 days, anti virals for 10 days and after all of this intratympanic injections. She strongly believes there is a viral infection (hope so).
Days have passed and I had my intratympanic injections 3 days ago and things are back to normal, well I was back to normal before the injection. I have some mild mild discomfort from the injection but I think it will pass soon.
Now I am on tapering prednisolone and schedule for appointment in 2 weeks to see if we need a second injection or not.

I hope this would be the end of my mysterious ear disease!

What I recommend to everybody, do not give up!!!! Investigate and do an MRI with protocol Hydrops to see what actually it’s happening in your ear, don’t get diagnosed only verbally by “symptoms”. Image and blood test!!! My CT was clear, Brain MRI clear but the MRI with protocol Hydrops not!

Today I am hearing close to normal with both ears, I have a very very very mild tinnitus (bother me a bit, but it’s the mildest on that I ever had until now). I am still traumatised and sometimes I get scared like “I am still hearing ok? I am still good? Do I have pressure or is just in my head?”… hope with time I will cure everything or at least my “PTSD”.

Ah yes, salt? My ENT told me from start that it’s not affecting me and I believe it and start to eat anything.
Result? Nothing worse change, I am fine!!

Betahistine? She told me to don’t take it because they are not working I don’t need it. I stoped them and I have 0 problem…toke them for 2-3 months for nothing…

Hope everyone get better and relief from this ear problems!
Love to everyone and do not give up!

I will keep you updated with my evolution but in case I forgot, probably I am better or dead(hope not the last one..)

Feel free to ask me anything you want!
Peace and love to everybody, don’t give up!

 

Yeah, so today after exactly 1 week from intratympanic injection I start again to lose a bit of 125-250Hz and a bit of pressure ore something. At same time I was tapering the prednisolone and as always when I arrive at this low dose my hearing start to get worst (slowly slowly everyday).

These could mean 3 things:
1) I need the second dose of intratympanic sooner.

2) Intratympanic injection is not working, never worked and the only thing that worked as always is a dose of at least 80mg prednisolone ( this is tested and always worked on ME, don’t do stupid thing with this by yourself!)

3) I am cursed to run in circle.

-No other symptoms.
-I eat anything, everything.
-No smoke( never smoked), no coffee (always extremely rare coffee drinker), no alcohol ( rare alcohol drinker).
-No Betaserc (Betahistine), nothing changed from the day that i stoped.
- I keep taking L-lysine (3x 1000mg per day), NAC 3x 800mg per day, Ginkgo 120-240mg per day, Vitamin C 1x 1000mg per day with riboflavin, magnesium bysglicinat 400mg day, Vitamin B complex High dose (100mg min) and 5ml Fish oil per day (from bottle not pills).
- My ENT gave me to take potassium 1000mg per day because I keep taking DIAMOX 250mg 5 days per week.


So yeah, still under investigation, another general medic who investigated for my blood test, think it can be Cogan syndrome ( but not 100%)….

Next week appointment, faster than it’s supposed to be. Hope we attack it in different way.


So until my last hope die, I still don’t believe in Meniere “stamp”(neither my ENT), I just need to find what the hell it’s happening and I will if time will be by my side!

 

I really appreciate your time in replying, and I would like to thank you for that! If you don't mind, I have some questions for you.

1. What was the cause of your condition?
2. Did you undergo any investigations (MRI, CT, MRI Hydrops, videonystagmographic examination, VHIT test, otolithic evoked potentials, audiometric assessment, etc.), or were you diagnosed clinically based on symptoms?
3. How is your hearing now?
4. How many intratympanic injections did you receive before your hearing stopped fluctuating and stabilized?

I have no vertigo issues (maybe extremely mild dizziness sometimes and small nystagmus only observed under test). Vertigo was present only for a short period at the beginning of this "journey," but since then, I have been vertigo-free—just dealing with hearing fluctuations.
I take DIAMOX to help reduce the hydrops that seem to affect my hearing, but I’m not sure if it’s really working.

Regarding Prednisolone, I know it's not the best option, but it has helped me piece things together. My strong response to corticosteroids—where I almost regain 80-90%(11-15db hl) of my hearing in my left ear—suggests that something immune/autoimmune-related is causing inflammation in my inner ear. This has led to vestibular hydrops and saccular involvement (but not cochlear hydrops) along with a blood-labyrinth barrier (BLB) rupture, as indicated by my MRI Hydrops results.

I believe my hearing flare-ups are caused by BLB rupture within the cochlea, which affects the endolymphatic fluid. This leads to an imbalance due to the mixing of unwanted substances, overfilling, and disrupting the endolymphatic composition.

But not responding to intratympanic injections could mean two things:

1. I need additional injections—possibly a second, third, or more.
2. The treatment isn’t effective because the issue is not localized but rather systemic (which aligns with my strong response to corticosteroids).

The top conditions that respond well to oral corticosteroids but not as effectively to local treatments include:

• Autoimmune Inner Ear Disease (AIED)
• Cogan Syndrome
• Susac Syndrome
• Vogt-Koyanagi-Harada Syndrome

These diseases often involve eye problems, though not always (except for AIED).

For such conditions, the first-line treatment is Prednisolone (corticosteroids), typically taken for 3-6 months at a consistently high dose with an extremely slow tapering process. If that doesn't work, the second-line treatment involves immunosuppressants (generally safer than long-term corticosteroids, but finding the right dosage can be tricky). The last-resort treatment includes medications like Rituximab.

I’ll see tomorrow how my ENT decides to proceed and the new attack plan.

From what I understand so far, if my condition hadn't responded to corticosteroids (as is the case for many people with Meniere), then it likely wouldn’t be related to an immune/inflammatory issue. However, my hearing always responds very well and quickly to Prednisolone—usually within 1-2 days. The last time, it took almost a week to return to normal, and this time, I am on day 3 with only slight improvement...hope will comeback again and wouldn't take long.

The issue is that I’ve only ever been prescribed my "effective" dose for short periods (4-13 days) before abruptly tapering off within 3-5 days, rather than maintaining a consistent dose for 2-3 months as recommended for immune-related conditions.

But we’ll see. Hopefully, I’ll read this in the future and say, "Thank God I found a good ENT, and we were on the right path."

 

Small update.

07.03.2025 was the last day of 80mg prednisolone and the day of intratympanic injection

Followed by 3 days of tapering to 60mg, small to no degradation to my hearing.

After that, I started the tapering to 40mg, mild oscillation in hearing in first 1.5-2 days. 3rd day my hearing is still “acceptable” but very worst on everything under 500Hz (moderate to severe) and above 4000 to 8000Hz (mild to moderate).
Tinnitus increase in intensity at around 8000-8500Hz and second small intensity tinnitus at around 150-200Hz(mild, not as severe how last time was).

The new thing is, after 2 days of keep taking the 40mg dose, my right ear start to act funky. I hear ok but I have a mild irritation sensation or I don’t know how to described it, feel like a scare that got irritated but inside the ear. This symptom is oscillating in intensity during the day.

I restarted to 2 days ago 80mg prednisolone and hope it will comeback again as usually.(this is 3rd day)

Due to my right ear new “sensation” I stopped any regimentation because I want to exclude anything to be sure.

As I have BLB rupture, increasing the flow to the inner ear can worsen the symptoms and recovery and who knows, maybe rupture could be caused because high flow and vasodilation…so be careful.

Keep searching, I know probably I will die sooner because of stress,medication etc. But I will try to fight until my last hope die, because being deaf will probably “damage” me even more physically and physically.

There is a hope that it will spontaneously cure its self, is it small but it is there! (For everybody, not just for my case)

Still no job, at least I got some interviews…but yeah, still working in this direction too.

 

Well, well, well… I’m back with a short update, because I keep thinking about others who have gone deaf—or might go deaf—because of poor diagnostics.


After my last update, I went to an ENT and started the protocol of intratympanic injections with Celestene 4mg/1ml.

• The first injection was on 07/03. After that, I started tapering prednisolone, but my hearing began to worsen again.
• The second injection was on 18/03. The ENT didn’t believe my symptoms, so they did an audiogram beforehand. Three days later, once I started tapering the steroids again, my hearing and other symptoms got funky… so I had to go back on a high dose.
• The third and final injection (as per the protocol) was on 24/03. This time, the ENT gave me prednisolone for a longer period and added valaciclovir.

In the meantime, I also saw an internist who recommended further investigation. She believes this isn’t viral—it’s clearly autoimmune. Why? Because I had an excellent response to oral corticosteroids, and local corticosteroids worked almost like magic.


Right now, I’m writing this from my hospital bed, where I’m undergoing further tests in preparation for what might be my final treatment—possibly a biological therapy with anti-TNF alpha.


Don’t give up. The “Meniere’s” label is often a lazy one, slapped on by ENTs who just want to make money or don’t want to dig deeper. What do I have? They still don’t know. I even told them they can name it after me! What they do know is that I respond very well to corticosteroids, and while I’m on them, I’m stable.


Yes, I still have some lingering symptoms—mild static tinnitus and dizziness when I move my head quickly—but my hearing is almost normal, or at least good enough for everyday life. My last audiogram showed a hearing loss of just 0–15 dB.


Don’t give up. If someone tells you there’s no cure or to “just live with it,” keep going. Keep searching. Don’t waste time with doctors who say things like, “We’ll see,” or, “Unfortunately, I’m not little Jesus.” Don’t be afraid to try new things under supervision, and have faith in medicine.


To those who have lost their hearing—I’m so sorry. It breaks my heart. I cried when I experienced moderate to severe deafness in my left ear, even if just for a short time. I truly hope that medicine will one day restore your hearing, even if only partially.


Sending love and hope to everyone.


I strongly believe Meniere’s is an autoimmune condition—and one that is poorly treated and largely ignored. Because as long as it’s not their problem, and they’re not the ones going deaf… they just don’t care.

I will keep you updated with my evolution!

 

This will likely be my final update.


The doctors have confirmed the diagnosis: AIED (Autoimmune Inner Ear Disease). Unfortunately, there is no proven treatment at this time, but we are trying a few options and will see if they help—fingers crossed.


After switching from prednisolone to prednisone (60 mg), my ear symptoms worsened. Since Monday, my hearing has declined again, though thankfully not drastically. I’ve now resumed a high dose of prednisolone and received a corticosteroid perfusion. I’m hopeful that, as in previous cases, things will improve over the coming days.


If you’re reading this and feel moved to, I would truly appreciate your good thoughts, well wishes, or even a prayer.


Thank you so much for your support throughout this journey, and for taking the time to read my updates during one of the most challenging times of my life.


Wishing everyone healing, peace, and strength.

-Well…transmission end, found the causa. Salute!