Hi there! New member here, wanting to share my thus far unresolved journey that relates closely to this recent thread. Posting detail here to help others compare situations and working therapies or resolutions.
For background, I'm mid 50s, male, in very good health, no chronic issues, maintain my weight and exercise regularly. I live in Toronto and have a professional job.
My basic tinnitus started in late 2017. First appeared in September as a VERY loud alarm that woke me up out of a dead sleep and had me running around my condo looking for the alarm. It went away after about 30 mins. A few months later, my tinnitus came on gradually but never to that level. Probably a 6-7 level compared to the alarm sound that I would rate a 10. High pitched whistling that over time morphed into ringing. Low sound level in left ear, loud in right ear, which has historically been problematic since I was a kid with infections, etc Unable to sleep or work for months, but over time slowly got quieter. As of today it's about 25% of what it was, no longer a bother, and in fact the right ear is now quieter than left. Will likely be permanent. I sleep and work with low ambient noise but could probably function without it.
My new issue started to come on around 2nd week of December 2020. We're talking some form of myoclonus in the right ear. Unsure if this is related, but I first noticed a stiff neck when I woke up, but no pain. So I changed my pillow setup and work-from-home ergonomics. Some body work (massage/chiro) has resolved that stiffness.
A week after that symptom the MEM started. Still have it. In retrospect I can say this thing takes on personalities that last from 2-7 days, roughly. There may be a high or low active day as it transitions between personalities.
The personalities are all different in terms of frequency of flare ups, duration of flare up, type of sound, speed of sounds, everything. But I do get multiple flare ups daily. No days off so far.
In terms of the actual sound, I have discovered there are 3 levels:
- loud = a thump, much like microphone tapping. Comes with a vibration sensation that no sound can mask and often can feel a muscle pulling inside my head somewhere
- medium = popcorn popping. Stocchatic, not sharp, a little muffled, just a medium thump that seems to have a little air release with each thump. No physical sensation
- soft = light, highly-muffled popcorn, almost like fluttering or a light puff of air
Key personalities in chronological order have been:
- Onset = quiet at night, comes on about hour after waking up, highly active or midly active during day, calms in evening.
- Worst phase = mostly loud, more on than off, runs right through the night, flareups last anywhere from 4 to 24 hours with breaks of less than an hour. No sleep, no work. This lasted about 10 days and I was absolutely mental.
- Intermittent, mostly stimulated by burping/yawning/stretching. Medium-soft sound, 5 min duration, medium paced. When sleeping it would be quiet when on my back but activate immediately if I turned onto my right side.
- Intermittent, medium sound (the real popcorn phase of about a week), stimulated as above by me or flares up on its own. Flareups would happen every 30 mins to 3 hours. If short duration between flareups they lasted about 5 mins, if longer duration then about 15. The sound was like muffled popcorn popping but probably 50% faster in speed.
- Current phase. Quiet for 3-6 hours at a time then activates for 3-6 hours. When activating it's mostly medium loudness with occasional loud thumps. Very slow paced. 1-2 pops every 10 to 30 seconds. I'm on the third day of this phase.
Between Phase 4 and 5 I had a VERY quiet day (only 2 short flareups the whole day and of COURSE this was the day of my ENT appointment), then an active day then a very quiet day. Encouraging.
My ability to sleep started to return with Phase 3 because it was less loud, and I sourced two looping noise/music tracks that I could play with a headphone in my right ear and sleep with it, without it having to be too loud. Without it the noise wakes me up immediately and I can't sleep until it stops. I wake up multiple times during the night to toss and readjust the ear piece, but in total can get 6-7 hours of sleep regularly. But the sound is just so distracting it's making work extremely difficult. I teach online part time while I am starting my own business. I have had to pause my business because if I'm in an important meeting and have a flareup I completely lose my concentration and have to end the meeting. I need resolution. I'm trying to be hopeful that it'll come, as some threads say for most people it goes away on its own but if it's like my T and takes up to a year there will be consequences to my career and financial situation that I don't think I can withstand.
Doc and ENT are perplexed. ENT found no issues. I have taken magnesium, B12, melatonin, sinus meds, antibiotics, steroidal sprays and nothing. I'm not a patient person and I already have misophonia (sensitivity to sound) so waiting for months to see what happens likely isn't sustainable.
One thing I'm going to try is an anticonvulsant - carbamazepine. It's inexpensive, and in my popcorn phase I googled that word and it brought up a few small studies of successful use with a brand of tinnitus called 'typewriter' tinnitus, that can sound like a typewriter, morse code, clicking or popcorn sounds. Stocchatic in nature and occur at fairly regular intervals with periods of quiet. My sound isn't as sharp as clicking or typewriter but otherwise fits. Often associated with some irritation or compression of the cochlear nerve. Because this is so rare to begin with studies are few and small numbers but have 100% success rate with the drug. I have been referred for an MRI which I hope comes up with something along this line. Otherwise going to bother my doc to give me an Rx for the anti-convulsant. I'm not sure if I can be optimistic here but need to try something.
One other note. Three days ago while getting a massage my therapist noticed my body is twitchy, even before she began the massage. I realized she's right and I have tiny twitches about every 30 seconds in one random place in my body that is different each time. Not bothersome but now that I notice them I see they have been persistent all day/night since first pointed out.
Lots of info here - sorry. But trying to share as much to be helpful. If this situation resolves itself I will be sure to update the boards. Frustrating to read about so many people having issues and then you never hear from them again so you're unsure what happened. Praying the anti-convulsant has some sort of effect and the MRI comes up with something.
Best to all.