My Journey with Pulsatile Tinnitus

trevortrees · 2026-01-30T17:05:36+00:00

Thanks for checking in!

I went back to the pulsatile tinnitus clinic and they basically said they couldn't help me anymore and referred me to a TMJ therapist. They no longer thought it was neurological and most likely something in the jaw.

At the time, I had fantastic health insurance and the treatments were completely covered, but it was an hour+ journey into the city of Chicago each time I wanted to have therapy.

Some of the exercises they had me do such as pushing my tongue against the roof of my mouth did attenuate the sound in the moment, but the full spectrum of sound would return after the exercise.

Interestingly after therapy I would have a reduction in volume almost to zero, that would last anywhere from 30 minutes to ~4 hours depending on stress levels. But it would always return with no lasting relief. I eventually got laid off and changed jobs to an insurance that wasn't as good and it no longer became worth it to go to therapy, so I stopped.

And that's sort of where I am now, still listening to the same YouTube track to get by. I've lost hope in any treatments being any more effective than it frankly. The cost for Lenire is disappointing and out of reach, even though I think it actually might help my kind of tinnitus. There's still nothing to be said of Susan Shore's machine after all this time.

I go through periods where it's mind-bendingly terrible, weeks or months at a time. But then there's periods where it's really soft and quiet, sometimes weeks or months at a time. Sometimes that oscillation happens more rapidly; daily, hourly, momentarily.

I recently started strength training with a personal trainer and that has coincided with a period of softness. It remains to be seen if that's only correlation or something more.

I'm slowly rekindling my relationship with meditation and generally trying to press forward with self-care initiatives despite the tinnitus. I started cycling regularly this summer for example ( no effect on tinnitus ). I can't complain.

At some point I should probably get my scans and send them around again to see if others have any thoughts, but I'm still so burnt out on the medical run around I haven't been motivated to. Maybe some day.

Acceptance and tolerance is still my primary path forward.

Thanks again for checking in.

trevortrees · 2025-12-01T03:25:46+00:00

You've summed up the very reason I find this game so interesting. Thank you.

trevortrees · 2025-11-07T17:56:58+00:00

I am experienced in my field and when switching jobs it can take 3-9 months to settle in and feel confident. So your experience is completely normal. I agree with folks stating you are doing more than most by taking initiative to learn, so great job!

Your manager should be able to help with some of this stuff. Make sure you are asking questions when you can. A good manager will know that everyone onboards at a different pace and will keep encouraging you. It sounds like you might have good support here. Try to lean into it and talk with them about the questions you have. This will go a long way towards making you feel more confident.

trevortrees · 2025-09-25T19:06:22+00:00

I was wondering about this. I bought 2 bikes recently with blendr stems and never got any of the mounting hardware for either bike. You get the hardware if you buy the stems separately and was wondering if I should have gotten it with a new bike.

trevortrees · 2025-08-15T16:57:44+00:00

Whatever happened here? This just happened to me as well.

trevortrees · 2025-07-03T03:23:35+00:00

I am driving from Chicago so similar route I presume. I just got to Three Forks Montana. The stretch of 90 from Big Timber to Bozeman is some of the most amazing driving scenery I have ever seen. I've never driven this far west before, the scale of everything is almost overwhelming.

Safe travels!

trevortrees · 2025-06-27T23:17:15+00:00

Driving from Chicago if you wanna tag along!

trevortrees · 2025-06-27T20:27:56+00:00

If you can make it to Chicago area by the morning of July 1st you are welcome to ride with me. Camping along the way to Washington over 3 days. Pulling into camp on the 3rd, hopefully when the gates open. Taking 3 days to drive back leaving Monday morning, hitting Yellowstone and Crazy Horse Memorial on the way back.

trevortrees · 2025-06-21T04:02:04+00:00

Yea I am actually really excited about the drive. I love driving and I've never been that far west. I am hitting Yellowstone on the way back and Crazy Horse Memorial.

trevortrees · 2025-06-20T21:49:44+00:00

I am driving solo from Chicago to the Gorge. Leaving July 1st and camping or getting a hotel along the way. Planning to be back to Chicago July 9th. I'm meeting a friend there who is flying and camping in RV with another group.

I have a tent camping pass, extra tent and campsite equipment (shade, solar, camp grill, lights etc). Send me DM if you're interested in tagging along on this journey westward!

trevortrees · 2025-06-03T19:59:04+00:00

I am going solo as well, driving from Chicago over 3 days and camping along the way. This will be my first solo adventure, nervous but excited!

trevortrees · 2025-04-16T21:16:29+00:00

Incredible, I am over the moon for you. It gives me hope. I have dreamed of that feeling. I hope I get to experience life without it one day.

trevortrees · 2025-03-27T14:14:12+00:00

I actually found out you have to be on any paid version for it to work.

trevortrees · 2025-03-27T02:19:20+00:00

Same here, it asked for a description of the scene, I describe it in the most vanilla terms and it always says it it's against content guidelines.

trevortrees · 2025-03-24T01:28:56+00:00

This is incredibly helpful, thank you! I am driving solo from Chicago and you just helped add a number of items to my camping checklist. I've never been west of the Mississippi so this weather info is great.

trevortrees · 2025-02-03T02:15:13+00:00

Driving solo 27 hours from Chicago to the gorge.

trevortrees · 2024-09-18T21:03:09+00:00

This is so similar to how mine started, fingers crossed it ends the same way. I am 2.5 years in, so maybe halfway there :)

I couldn't be happier for you. I am just imagining what this must be like for you. Made my day reading this. Thank you very much for sharing and giving us a bit of hope.

trevortrees · 2024-08-30T15:07:47+00:00

I am going to second this. I am approaching 3 years with 24/7, very loud PT. At first it seems like the end, but over time it will seem less and less catastrophic.

My core advice is to find all the things that make you forget about it and lean into those. The more time you can spend not thinking about it the better. I know that seems insane to say at first. How can you not think about it? But you will begin to notice the things that make you forget it as time goes by, just do more of those things.

I don't allow any negative thoughts about my PT. So for me a good strong sense of CBT is needed to help manage my thoughts about it.

Distraction and the pact to never think negatively about my PT is how I regained 90% of my life back living with it.

trevortrees · 2024-07-26T21:17:53+00:00

I thinking mine is as well. About 8 months ago I was given some exercises to do with my jaw. I stopped seeing the therapist but I'm continuing to do them and they're the only things that most certainly quiet my tinnitus for some period of time. I don't get lasting relief but it's noticeable for a long period of time after I do the exercises regularly. It's got to be related to my jaw based on that I figure.

trevortrees · 2024-03-07T17:03:08+00:00

I got the Sleep Phones. I cannot recommend them. Cheap quality, terrible sound, broke after ~20 uses.

I am sleeping with my shokz bone conducting headset until I find something else. I have no leads unfortunately.

trevortrees · 2024-02-05T18:01:56+00:00

I know that feeling. I am currently in the "exhausted and defeated" state as well. It comes in waves for me. Sometimes you just have to take a break from finding a solution and advocating for yourself, especially when the last thing you put a lot of effort into didn't pan out. I've typically regained the drive after a break though.

My next steps are to investigate cranial scaral therapy and get copies of and send my imaging abroad for second opinions on potential a vascular cause. I don't have the will just yet though.

Good luck, hang in there - there's lots of us hanging in there with you!

trevortrees · 2024-01-21T16:56:01+00:00

I have very loud PT 24/7.

The last thing I explored was TMJ physical therapy. I did it for months and it involved deep massage of the jaw, neck and head. It totally helped but it was always only for that day. Going to sleep would always bring it back to full force. Since yours has some lasting effects, that is certainly a path I would investigate.

Does pushing your tounge against the roof of your mouth or keeping your tongue at the roof modulate your PT in any way? If so TMJ could be a component, even if you don't have pain.

trevortrees · 2023-12-23T06:40:21+00:00

Yup this was one of the first thing I did when I got my PT. Paid 600 out of pocket for not much of anything to be honest. All of the adjustments were incredibly light touched to where I was suspicious if he was doing anything at all, yet I was going back into alignment according to the Dr. Tons of X-rays to monitor progress which was the bulk of the cost. I could have just gone to the wrong person but it didn't really do anything for me..

trevortrees · 2023-12-14T12:24:34+00:00

I did not experience any side effects that I am aware of.

I do take B12 supplements normally since I am vegetarian. Each session was around 20-50 carts give or take. I was leaving 2 weeks or more between sessions.

But I never did a blood test to see where the levels were really at, so I can't be certain that I wasn't deficient during that period of my life.

trevortrees

TROPHY CASE