B

BeMagnified

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  • B
    I finally got to see a neurologist. He believes that my symptoms are psychosomatic but he'll refer me to an MRI of my brain and neck anyway.
    ECP
    May I ask how the MRI went? Or are you still waiting to have the appointment for it?
    B
    My PCP referred me to an ENT in December 2022. This week, I got a letter saying that my first appt with this ENT takes place in June 2025.
    B
    The muscles on the left side of my body are still twitching and jumping non stop 24/7. I've been finally referred to a neurologist.
    B
    I think I have myoclonus. My left ear thumps and my left shoulder and left side of my neck have been jerking non stop for the last 3 weeks.
    View previous comments…
    MindOverMatter
    Ok. "The jerking is strong enough that it makes me feel off balance when walking or standing." Sounds like the issue is more than myoclonus. You should see a neurologist.
    B
    I do agree that I need to see a neurologist but I need to be referred to one by my PCP. Right now, it feels like my PCP is just guessing while throwing drugs at me.
    B
    I'm not certain about her compressed nerve diagnosis as I have no pain or tingling, just a strong jerking and twitching sensation that has lasted 24/7 for the last 3 weeks. She hasn't even sent me in for a scan of my neck or spine.
    B
    My musical tinnitus began one year ago this week. I had a lot of anxiety for the first 6 months but I would say I'm coping much better now.
    cjbhab
    What does your musical T sound like? I believe I had musical T for a couple years and it went away. Lately I've been experiencing it occasionally at night though. It is different than the last time.
    B
    @cjbhab It often sounds like either bagpipes or an accordion playing the same four or five notes over and over again. I hear the same "melody" all the time but the melody will change octaves and speed throughout the day.
    cjbhab
    @BeMagnified mine sounded like the neighbours were having a party and there was music blasting next door… but there was no music.
    B
    The ear pressure, ringing and hearing loss have gotten worse and I really don't know what to do. I'm really terrified.
    View previous comments…
    B
    sakrt
    Even better! just a thought if you're unable see Dr. to maybe try them out. I'm glad you were able through ER, however prednisone is a nasty drug. Did it help? @BeMagnified
    B
    @sakrt I got the prescription filled but I never took any more than the first dose. According to the pharmacist, the doctor didn't prescribe me a proper taper (the ER doctor wanted me to take 50 mg for 9 days and then 10 mg for another 9 days). After doing research, I decided not to finish the course.
    B
    I'm feeling so lopsided and dizzy and I can't stop throwing up. The whooshing is gone but hearing loss, ringing and pressure r still there.
    Juliane
    Sorry to hear that :-( It could sound a bit like symptoms of Menieres disease. Have you been tested for that? Sorry if this is a stupid/ insensitive question.
    B
    @Juliane I went through testing back in the late 2000s and everything came back normal. I haven't been able to receive a diagnosis of any kind despite seeing multiple ENTs over the years.
    B
    It's nearly 2am on a saturday and I just lost my hearing in my left ear. I'm also experiencing loud ringing and rhythmic whooshing.
    B
    My musical tinnitus began 6 months ago.Even though I still have it, I would say I'm coping much better with it these days compared to before
    B
    It feels like my head is under water. Also can't hear low tones in my right ear and am getting loud humming and rumbling. Also can't sleep.
    B
    I was just watching a movie and the hearing in my left ear suddenly dropped and was followed by ringing, pressure and rhythmic whooshing.
    makeyourownluck
    If it was just temporary then it's nothing to worry about.. pretty standard for us T sufferers. Just a muscle spasm.
    B
    I never thought I would have bagpipes, an accordion, screeching tires, a fire alarm and a helicopter all trapped in my right ear.
    View previous comments…
    B
    @TindalosKeeper I pretty much have my own personal soundtrack playing in my ear during all my waking hours. It is interesting to listen to but I'd rather have just the simple whistling and hissing. At least I could mask the hissing and whistling unlike my other sounds that just compete with external noise. I miss how simple my tinnitus used to be.
    TindalosKeeper
    Now that you mention these different Tinnitus tunes, do you think the Tinnitus itself is the one causing Hearing Loss, then once one of these tunes fade or entirely go away, your hearing returns?

    Unfortunately for me, my own Hearing Loss has been quite consistent, strangely enough. It's like some hair cells in my ear decided they lived enough and yeeted themselves from a bridge the next morning, lol.
    B
    @TindalosKeeper My hearing actually keeps testing normal although though I do feel that the musical tones interfere with my hearing. My musical tones have never faded not even once suddenly developing nearly 6 months ago.

    During my sudden hearing loss episodes, I get pulsatile tinnitus. In this case, my hearing returns as the pulsatile tinnitus fades away. I think the two are connected somehow.
    B
    So the 5th ENT said nothing can be done and recommended that I should see a psychiatrist. The appointment went as well as expected.
    View previous comments…
    B
    @EternalRinging I'm not sure if I'll ever know the cause of mine. I've had countless hearing tests over the years and they have always come back normal. My last hearing test showed that I have slightly better hearing in the ear with the tinnitus than the one without.
    EternalRinging
    Have you ever had a hearing test in the extended frequency ranges up to 20 kHz? My normal audiogram up to 8 kHz is within 10 dB but when I got tested with the extended frequency range, I found I have hearing loss of 35 dB on ~16 kHz.

    Thou I know it's pointless cuz I'm pretty sure that almost everybody without tinnitus also have hearing loss in the extended frequency, but who knows
    B
    @EternalRinging I have never had an official extended hearing test. I did do an extended hearing test through an app on my phone and it showed hearing loss in both ears in the extended range.
    just1morething
    Call your doctor right away. You may need a steroid injection into your middle ear. Go to urgent care or ER today and see what they say. Delaying could possibly cause permanent hearing loss.
    View previous comments…
    just1morething
    @BeMagnified, Did you go to urgent care or ER? I would at least talk to your ENTs nurse by phone ASAP.
    B
    I didn't go to the ER this time but I have in the past. What normally happens at the ER is that they look into my ear and see the fluid that's been sitting there for years. Then they blame the fluid for my symptoms and prescribe me nasal spray, which I'm already on. At this point, it feels so futile to go there to get help even though sudden hearing loss is technically an emergency.
    S
    Hi @BeMagnified ive been gargling salt water about 5 times a day for a few days now and it's helping with my post nasal drip/catarrh or whatever is going on with my tubes. My nose feels clear and I can breath better. Have you ever done that constantly and trier it for a week?
    B
    I just suddenly lost my hearing in my left ear again. I'm getting a lot of pressure, ringing and rhythmic whooshing. This is terrifying.
    B
    So I've gained a few new tones this week. One of the tones sounds similar to the gurgling sound from the movie The Grudge.
    Jupiterman
    Sorry to hear that, hopefully they are temporary.

    What do you think caused this?
    B
    @Jupiterman I'm not sure but I've had a lot of sinus and congestion problems lately, which I don't think is helping my ear. I sometimes wonder if I have some form of cochlear hydrops given that I also have sound distortion, fullness and dizziness.
    B
    I feel lonely & anxious during these late night hours. I wish I didn't have DSPD so that I could sleep at night like most other people.
    B
    So I have an appointment with a 5th ENT soon. I'm not feeling hopeful since the others weren't helpful but I don't know what else to do.
    just1morething
    ENTs don't have anything to offer us for tinnitus. Widex Zen seem to help somewhat.
    B
    @just1morething I don't expect a cure for tinnitus but it would be nice to get a diagnosis for all my symptoms as well as some help for my chronic sinusitis and the fluid that has been sitting behind my eardrums for 3 years.
    B
    So I've been awake for 37 hours straight and I can't seem to calm my body and mind down. I seem stuck in flight or fight/anxiety mode.
    View previous comments…
    SamRosemary
    @BeMagnified I was able to self refer through here:
    https://www.accessmha.ca/
    It does say Eastern Ontario (not sure where you are), but even if not give them a try and if you're not in the area for those services they can refer you.
    SamRosemary
    Through them I was able to go through intakes and get into the CBT program through OSP- Ontario Structured Psychotherapy through The Royal here in Ottawa. Was 16weeks and covered through OHIP. Didn't take too long to get into either.
    B
    @SamRosemary I am from a rural area in southwestern Ontario. It looks like calling 211 might be an option (I can't find such a link or program for my area online). I might look into cmha since they have been helpful in the past.
    B
    Just suddenly lost my hearing in my left ear. Also getting loud ringing and rhythmic whooshing in that ear. Might go to the ER but unsure.
    View previous comments…
    D
    And also an episode of decreased high frequencies in the left ear (which probably was a fleeting T episode but I don't know) for 10 minutes. My T is thankfully mild, except for a few days per month, that it goes to moderate and I have a general instability/off balance feeling nearly all the time. So yeah, I'm in the same boat with doctors... 2/2
    B
    @DimLeb I've had countless hearing tests since 2007 and they've always come back normal. I think I might have a form diplacusis as sounds don't sound the same in each ear (but my ability to hear tests the same in each ear).
    B
    @DimLeb Up until November, my t was mild to moderate and non disruptive most days. I took one dose of prednisone and suddenly developed musical T. A couple of weeks ago, my regular T got more intense and I started to get fullness and dizziness.
    B
    Right ear still screaming. Getting dizzy spells, fullness and tinny hearing. Feeling depressed and sleep deprived.
    DeanD
    @BeMagnified - I have very similar symptoms as you. Are you on any medication?
    Do you hear any loud crackling in your ears when swallowing?
    B
    @DeanD I don't get any crackling when I swallow. I do have fluid behind both eardrums, which I'm on steroid nasal spray for. But I don't know if this fluid is responsible for my symptoms. It's possible that I have eustachian tube dysfunction.
    DeanD
    @BeMagnified - I have been wondering if mine is ETD related to, but the symptoms can match. Getting diagnosed for such things isn't easy
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