Yet Another Habituation Case

Hi,

I've been a relatively long time lurker on this forum. It was actually really comforting reading all habituation\recovery testimonials posted on here back in a days when my tinnitus started. It had given hope in the initial period after onset. The hardest time i think. So after 10 month i decided it would be fair to write another one of this habituation testimonials.

My tinnitus is actually relatively mild, very high frequency hissing (like tv static only a bit higher). Its left ear only. Sometimes it goes louder and changes to ringing which lasts for about 10 seconds(then again this type of ringing i had for my entire life), then goes back to hissing. Each of those changes causes a spike in anxiety, but this subsides quickly. I am one of the fortunates who can sleep without problems from it.

I have never completely find out the cause behind it. Perhaps it was my attempts to irrigate my ear(with cold water(never do that!!)) after using debrox for wax removal. Or maybe it is somehow related to my persistent 10 month dizziness(for which i didn't find the cause ether)

As many of us, initially i was freaking out. Depression and anxiety was high with this one. I was obsessing with it. It consumed every second of my existence. From early morning to last thought before sleep i was hearing this sound and thinking about it. It interfered with everything. I couldn't comprehend how am i going to live like this for the rest of my life. Only real relieve was shower, and one web site which had this white noise sound, which could mask it.

Then after 3-4 month i've started to notice that i had like 10-20 minutes not thinking about it. Then those times went to 30 - 1 hr etc. It was happening gradually and unfortunately not as fast as i would have liked, but it nevertheless it was. Until one day i've noticed that even when it gets my attention it i don't really care. It had become a part of me, background noise, new normal. I still have this hope that one day I would be able to hear complete silence again. But as of today this normal is good enough.

So any newbee reading this. Have hope. You will be ok someday, just as i am now.

 

What happened to your dizziness?

 

Still here. I do have bad and good days. Had 2 ENT 1 GP, 3 Neurologists, 1 Dentist, 2 Otoneurologist, 2 MRI, 1 EMG, hearing tests, a whole set of weird ENT tests, not to mention bood tests. So far i had 2 diagnosis( vestibular paroxysmia and (or) vestibular migraine (MAV) and generalized anxiety disorder as a bonus. All those docs actually told me what i don't(unlikely to) have(which is ALS, MS, Brain tumors, wilson disease etc) Of what was left paroxysmia made some sense, so i was taking 300mg oxcarbazepine daily and it helped. Then I've stopped taking it and now i am having relapse. On top of dizziness there are hand tremors, right leg, right arm, right part of the face tensions sensations. I am 32 y.o. male. My guess it's a bit too early for this set of "blessings" to be normal, and I am not really buying "it's all in your head" thing yet(though it's been suggested to me numerous times).

So yeah. I guess tinnitus is not my top priority nowadays). Though I have to say when its all started i had thought tinnitus was the worst. But anyway this was supposed to be inspirational.

 

Are you an outdoors person? The tremors and face tension, along with dizziness could be a sign of some kind of Lyme infection. Have you been tested? I mean the full-blown Western blot, not a simple lyme titer.

 

Yeah I don't buy the vestibular migraine thing in general. It seems like a cop out answer. I also don't buy the "it's all in your head." That's essentially blaming the victim.

 

Last question, did you have a cold/flu before this all happened?

 

Well i don't buy this chronic lyme thing. Both internet and docs are saying this is bs. To answer no i haven't been tested for lyme(though i thought about it) I did not have acute phase. And for lyme to cause this symptoms i would have to have some nerve damage visible on MRI or tests, or neurology exams. And fortunately they are all clean.

Cold/ flu - no (its not labyrinthitis or vestibular neuritis as i didn't really have acute phase\ ear infection and disease pattern is actually stable/progressive). I did however had inflamed sinuses at the time(and i do have them now), so some kind of weird allergy is still an option. My best guess at the moment is either Vestibular Paroxysmia or some kind of non MS autoimmune disease. Migraine is possibility, i used to have them until they stopped 3 years ago. Don't have any pain though. Probably going to go to Mayo in winter to give it another shot. Then chiros, then shamans, and then shrinks))


I appreciate trying though

 

I see. Well the Lyme thing is hotly debated and the science is still out on it. That might be out of the scope of this conversation though.

Moving on, what was the onset of your symptoms like since there wasn't a definitive event like a cold/flu?

 

I had 2 events.

1: in august 2015 I was sleeping and woke up have a bout of true vertigo. It lasted for 30 minutes. I had nausea and anxiety attack. At the time i thought it was BPPV. It had resolved completely in 2 days, so i did not consult docs on that.

2: 31 october 2015 was sleeping had a dream as if somebody trying to cut my throat. Woke up being very anxious. Was trying to go back to sleep but each time i was about to pass i had this falling sensation which made me thing if i succumb to it i will die. Had this brief "brain waves" dizzines ever since.

Given that both episodes involved sleep, weird dreams and anxiety, psychiatric disorder is actually a possibility too, so even that i am not buying it, i don't completely dismiss it either.

month later after GP asked to use this debrox to clean my ears I developed tinnitus after rinsing ear with not very warm water(had 2nd vertigo attach then).
So i still don't know what had caused it. Maybe underlying cause of this dizzines, or my unfortunate "risning" exercise, or ibuprofen i took 2 days before. Probably will never know.

 

Hmm yeah that's completely out of the blue. Interestingly, I've had the experience you're talking about where right as I'm about to fall asleep I "reject" it and immediately get up with my heart racing. It's happened to me quite a few times and I'm not sure what it was about.

 

I think its called hypnic jerk. And usually its quite normal. The dream and dizziness are abnormal parts. So do you have dizziness too? Or just curios?

 

I had one true dizziness event, followed by what I call "brain fog" reminiscent of a hangover type feeling. So I had some big events that resulted in my T:

1. January '16. I had just gotten over a cold/flu (could have been bacterial) that I took a 5 day course of antibiotics for. I still had a lingering cough, but it snowed here and I couldn't resist going sledding outside. The following weekend my right ear felt like it was clogged. Didn't think much of it. I thought it was just a lingering effect of my infection. About 5 days later I was driving and just couldn't clear my ear so I performed the Valsalva maneuver. My left ear pressurized...check. However, it took more force for my right ear to pressurize and as soon as it did, my field of vision rotated clockwise for about 5-10 seconds. My heart immediately raced and I almost ditched where I had to go. I kind of shook it off but still felt "off." It wore off later that night.

2. Early February'16. I was driving through the mountains with my family on the way back from visiting some family friends. I tried to clear my right ear but nothing was working. I was afraid to Valsalva because of what happened before. I started feeling weird, kind of like a brain fog. It's hard to describe because it wasn't dizziness per se. We made a pit stop at a grocery store to use the bathroom. When inside the store the lights and all of the items overwhelmed me. When we got back in the car and I continued driving I had to pull over at a gas station and have my dad drive the rest of the way. At this point my ears were continuously ringing. My father is a doctor, so when we got home he checked my ear and said that it was a little red but there wasn't any fluid. He performed a tympanometric measurement and it checked out. He thought it might be allergic so he gave me some Claritin. My ear ringing went away in the morning.

3. Early February '16. The Claritin was working. I didn't have the clogged feeling anymore. However, one day while driving I immediately got a dry mouth. I couldn't spit out saliva for the life of me. Additionally, I got a tingling sensation all over my body that would come and go. I had never felt like this before so I immediately ditched where I was going and went to the ER. Since I couldn't describe how I felt, I told them I felt "dizzy." They did an EKG and the doctor told me it was likely a side effect of the Claritin. That night I also had an intense ringing in my ears. It went away in the morning. Thus I stopped taking Claritin and the tingly sensation went away. My ear fullness returned however so I ended up taking another 5 day course of antibiotics.

4. Late February '16. Since taking my second course of antibiotics I was feeling good. My life was back to normal. I was exercising and doing all that good stuff. However, one day I was driving and I felt like the lights were dimmed in my head. I got an intense brain fog and no matter how many times I tried to clear my right ear it still felt full. I also had a feeling that my right tonsil was inflamed. This is also when my nose and the upper part of the back of my throat decided to stop producing mucus and become really dry. The ringing went away in the morning and I went to an ENT. He did all sorts of tests and told me that my ears were fine. However the brain fog never went away. That weekend I also experienced fatigue and a mild headache on the right side of my head.

The brain fog, headaches, and fatigue continued while I saw a neurologist, GP, and another ENT (in that order). I got blood tests done, an MRI, the works and everything checked out. My GP thought I was still experiencing inflammation from the infection so he told me to take ibuprofen for ten days. I got T the day after the tenth day of taking ibuprofen. It wasn't until the second ENT said that I might have Eustachian tube dysfunction and prescribed me a steroid nasal spray that the brain fog started going away. The headaches also lessened but never truly went away. I've been off the steroid sprays for over a month now and the brain fog is pretty much gone. I still get mild headaches and the T remains. My nose still doesn't produce any mucus or phlegm.

So yeah I'm at a loss. Currently I'm taking a ten day course of antibiotics in case I do have an underlying infection. We'll have to see what happens from there.

 

To add, I have had a few (very few) days where it seems like my T is completely gone. However it comes back when I go to sleep and get up the next morning. Which leads me to believe that it wasn't the ibuprofen that caused my T, but something else... and that it could be reversible.

 

Oh btw hypnic jerk is very interesting. I didn't know there was a term for it or that other people experienced it. Yeah I agree that it's pretty normal. I've had it happen even before all my T related problems started and didn't think much of it.

 

@i3anshee do you have hearing loss?