A total nightmare! (labyrinthitis) Would love some feedback.

Ears, nose and throat
1

So definitely read a lot of posts here. For me it all started about two and a half months ago, I was preparing dinner for some friends that were coming over and suddenly out of nowhere I felt SUPER dizzy and lightheaded. Been to the ER a couple of times, got a CT scan, saw an internal medicine. Sounds like par for the course from what I've read because everything came back "normal".

When it gets bad it's so hellish, I feel really bizarre, awful, strange, can't think, dizzy, feel kind of shakey, had tinnitus in my ear + fluid, and it kind of developed into a sinusitis with crazy head pressure.  I've had no energy, get fatigued very easily, can't work out.

It's been about 10 weeks, my symptoms are much less severe thank god but it's still controlling my life. I can't wait to just feel normal and do normal things again without fear of random episodes of awfulness lol. 

When I see the doctor's, I feel like I'm being a whiny ****, and it feels like they think the same because they are can be really dismissive.  I've broken multiple bones, and dealt with crappy things in the past.... But this absolutely takes the cake for being the most unthinkably awful and super long lasting illness. It really wears me down sometimes, it feels like I'm losing my mind. When  I get all disorientated and my equilibrium goes all bonkers to make matters extra fun it seems to kick in the whole fight or flight response and then you get a shwack of anxiety / panic! Weeeeee!!!!

I've tried everything from neti pots, steroid nasal sprays, antibiotics, xylitol nasal spray, neti pots with baby shampoo, hot baths, mild cardio walks, but I guess it's just time... Probably one of the most frustrating experiences is the fact you just have to kind of wait around killing time and crossing your fingers for good days.  I've had a CT scan, ECG, bloodwork, all came back ok. Am I missing anything? I really feel like this has to be a labyrinthitis but sometimes the disorientation and bizarre sensory input makes it feel like it has nothing to do with your inner ear lol. Anyways thanks for reading... Any feedback or thoughts would be greatly appreciated : ) Good luck to everyone experiencing this, it truly is the most awful sh*t to deal with!!!!!! 

 

2

Ugh there is no edit!! I should have read it before I posted, sorry for the grammatical mistakes

3

Have you had an audiogram and/or caloric tests (hot and/or cold air/water into the ears with eye movement monitoring)?  Have you been asked to stand with your feet together with your eyes closed?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

4

Yes they have done the eye closed feet together test.  

No I have not received an audiogram orr caloric test. 

5

With this specific test, did you fall to one side?  And if so, which side?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

6

Hi Fuzzyfoot - I enjoyed reading your post. 

My doctors are still trying to determine if I have Meniere's Disease or possibly Labyrinthitis. They are so close in symptoms. 

I have had ongoing problems with my ears since I was a child. Despite all my problems in the past, nothing as annoyting and disruptive as the past 6 weeks or so.

The newest problem started while waking up out of a sounds sleep with the room spinning. It was so bad, I couldn't step one foot out of bed, in fear of falling flat on my face. I vomited numerous times and refused to go the hospital. After 45 minutes or so, I found a position to fall back to sleep, half sitting up and curled up. I woke up three hours later feeling like I was hungover. I was able to get out of bed and didn't experience the room spinning or the dizziness any longer. From this point on, my tinnitus found a whole new spiked level of annoyance. Headaches were more often and lasted longer and vertigo comes and goes often. I have intermittent hearing loss in my left ear. Most of the time, loud sounds bother the ear with distorted, loud sound, amost magnified that makes me want to jump out of my skin at times. For instance, my dogs barking or a door slamming. I went to a specialist (Neurotologist) and went through 2 hours of testing. Once they concluded I didnt have BPPV, they really didn't bring much more to the table other than an absobitant bill that would choke a horse. Thank God for my insuance. 

I have done some reading up on Labrinthitis and it appears "time" like you said is the most important feature or cure. It sounds like you can get rid of this, once it runs it's course. 

Like you, I've gotten to the point of even discussing my symptoms with a doctor. I've heard so many people that have heard, there's nothing we can do for you for that tinnitius, you'll just have to leave with it. Unless you've suffered with the annoying, disruptive sound of a thousand crickets in your ear, complimented by a whistling tea kettle, you can't sympathize with a patient, I guess. I'm seeing a specialist tomorrow with the hope of something that can help me sleep more than an hour or two at night without being woken up with the tea kettle and crickets. 

You are so right when you say you've dealt with other things, none this annoying. I agree. Anything pertaining to the middle ear is absolutely the most miserable deal going. I've had many challenges in my life but this one has tried to suck the living life out of me. I guess it's too much to ask for to have quiet ears, no vertigo, no headaches or distorted, loud hearing.

Please let us know how you progress along. I have a good feeling yours will exit stage left, very soon. You seem to have a great attiude and resolve. I guess we need stamina and perserverance to deal with these ear problems. 

Take care - 

7

What the heck my reply didn't post! Anyways thanks for the kind words bud! It was really heartwarming and totally lifted my spirits reading, so thank you : ) 

We can go through the process of slowly losing our minds together! haha yaaaaay! 

Thankfully I haven't had super super loud tinnitus like you are describing, that must be ridiculous to tolerate. 

Have you tried having really really hot baths? That  seemed to help a lot with symptoms but only for a couple of hours.  

Do you have fluid behind your ears? I'm not sure if it's just the timing, but xylitol nasal spray (xlear was the brand I used) was when I seemed to really have a breakthrough, but maybe it was just coincidental but definitely worth checking out. 

It's totally a mind game though eh? It's happened to me so many times where I start to feel better and I get SUPER excited, like so so so excited, and then about 18 hours later *BAM* it hits me again haha.  The past few days I've been feeling a lot better but I'm still on edge waiting for it to pop up. 

Did you ever have any sinus problems with yours? about 4 weeks in I developed some pretty crazy sinus pressure. 

8

Hello ... 

I have had a VN since 8 weeks .. I'm much better since 3 week .. i can run walk drive ... even if I have a mild dizzy ... so now my symptoms are not as before ( dizzy , fullness in ear .  Constant for around 7 days ) 

Now .. just mild dizzy and small issue while walking .. and sometimes when I'm in stores and crowded area i feel strange just 30 % of what I had in first 2 weeks ... 

I'm recovering with very good days and 30% of symptoms in bad days ... 

How can I become normal again 

 ..thanks ... 

9

I have had a VN since 8 weeks .. I'm much better since 3 week .. i can run walk drive ... even if I have a mild dizzy ... so now my symptoms are not as before ( dizzy , fullness in ear .  Constant for around 7 days ) 

Now .. just mild dizzy and small issue while walking .. and sometimes when I'm in stores and crowded area i feel strange just 30 % of what I had in first 2 weeks ... 

I'm recovering with very good days and 30% of symptoms in bad days ... 

I had the sinus pressure since 5 weeks ..I mean after 3 weeks of the first symptoms came ... 

I just start to feel th pressure on forhead and sinus while I was getting better fr the dizziness ? 

Btw I had some problems in my sinus and I'm using spray since 10 days ... I got pain at first 3 days but now no more pain ...just pressure on them