Saying 'Hello,' an Update, and a Couple of Questions as Well!

Greetings, friends!

My story is in my other threads, so I’ll skip all that, except for a few updates I haven’t mentioned, for those I’ve chatted with over the past few months:

Coming up on a year.

Tinnitus was once just in right ear, but now in both.

Crackling/thumping in both ears which, weirdly, sometimes completely stops when I’m lying down. (First question: Has anyone else had this happen? Is it significant that it sometimes abates in that position?)

Better days/not-so-better days.

Was using a WNG in the right ear (using white noise) which brought some relief, but when both ears became involved, I stopped using it.

Development of sound sensitivity over the spring and summer, and months of ear plugs, ear muffs, and trying to learn when to use them and when not to. (Although I had some sound sensitivity at the beginning, it calmed somewhat when I was taking clonazepam (see below). I think it began to come back when I started to taper.)

I’ve read that pink noise is better for the sound sensitivity, and I saw my audiologist about this.

This happened at the appointment: I had both generators (pink noise) in for less than a minute. Seriously – it was about 40 seconds, tops, and for part of that time they weren’t even all the way in.

I have the generators programmed with pink noise on loan, but after leaving the audiologist the tinnitus spiked. It settled down somewhat the next day, and had a couple of better days, but seems more intense today.

Sound sensitivity seemed better yesterday – moving back toward old levels today. Days when noises that have consistently bothered me are okay in the morning, and then later in the day, they’re bothersome again.

Some fluttering in the eardrum; some discomfort that (so far) eventually eases up.

Fullness, although not a “stuffed” feeling.

Tinnitus that occasionally “surges” (can’t come up with a better word) when lying down. Can pull me back from sleep.

Was taking clonazepam 0.5 mg but decided in May to taper. Had to do this myself as MD who prescribed it said to “just stop taking it” when I asked about tapering methods. Had enough refills to taper sensibly, so started then. Taper has gone on much longer than I anticipated (took the stuff regularly for 5 months; still tapering over 6 months) due to a couple of holds for some stressful situations over the summer and a few bumps emotionally with reductions. Switched from pill-cutting to liquid taper about a month ago (0.5 mg pill in 50 ml liquid) now on 6 ml, reducing slowly every 7 to 10 days, so about the equivalent of one 0.5 mg pill every 8 days (if my math is right!) I have to admit – there are moments when I want to start taking it again, because it helped with sleep and often took the edge off, sometimes even seeming to quiet it down a bit, but not a fan of benzo dependency. There’s nothing therapeutic about the dose I’m taking now, but still want to slide off as gradually as possible. Hoping that some of this will ultimately improve once I’m finally off the stuff.

I’ve ordered some musician’s earplugs from audiologist (Westone, I think they’re called) and if these aren’t helpful, will try for custom-mades with filters.

A question regarding pink noise – is it better for the sound sensitivity in terms of gradual improvement? Is it effective for tinnitus? Or is it a crapshoot? Is it possible for literally less than one minute of this to cause that big of a spike? I really want to try the pink noise WNGs but worried about spiking. I’m not asking anyone to tell me what to do, here – just wondering if anyone has had a similar experience. When I was using the white noise in the one ear it would often be louder when I took it out but would settle, but again, it was only in the one ear at the time. The left ear wasn’t involved.

Ear muffs are with me at all times, although trying not to over-use them.

At almost a year in, I can’t tell myself that I’m “still in the early days.”

But despite some of the things above, I’m still hopeful. I think I’ve gone as far as I can with my ENT, but I’ll keep trying things.

And I did have a test to find out if I'm still allergic to penicillin. (Had a reaction when I was a kid, apparently, although I don't remember it.) Thankfully, that went okay -- no reaction (the test is pretty thorough) so probably okay to take the 'cillins, now, if I ever need antibiotics.

I’ve been off the board for a while as I taper down on the benzo. Will probably be off again for a while. As helpful as it can be, I’ve found that visiting too often keeps my mind on it and almost always there are posts that poke my anxiety (no one's fault -- it just happens). So, at least for now, I have to pick and choose. Just wanted to say “hello,” though, to those I’ve gotten to know since joining in April. If anyone reading this has input on the questions above (about the cracking/thumping that sometimes abates when lying down, and the other question about pink noise), or input on anything else for that matter -- or even if you just want to say 'hello!'-- please don’t be shy!

I hope all of you are doing well.

I’ll check in again, soon. Thanks for reading.



Mystery Reader

 

The lying down thing could be blood press or cardiovascular related.