Hi
@kmiki7 -- Thanks for asking about my experience. I still have the tinnitus, which stayed at almost unbearable levels for about 2 years. Then things started to very gradually improve, and now after five years, have reached a point where I'm able to "manage" it. That is, it still bothers me daily, but not at the extreme level it did in the beginning.
I'm
very interested in some of your ideas about what happned to you (and possibly me), as I still don't know what the mechanism was that caused the tinnitus. And if I did, it might give me some ideas as well as to how I might improve things. I very much look forward to hearing some of your thoughts and ideas on this all.
Thanks!
Hi Wayne,
thanks for getting back to me. I will be happy to share my ideas.
Can I first ask (before I forget, and in case this response becomes way too long) -
five years ago when your tinnitus began, what other medications other than promethazine were you taking? (if any).
Also, I have spent some time on the tinnitustalk forum and looked up promethazine and possibly found a few of your posts there as well? That user's story pretty much coincides with yours so I figured it probably was you? If so, you mentioned there that you already had hyperacusis before you got tinnitus. My question is, at which point did you get hyperacusis? Do you remember what started it?
Also, are you on any medications right now and have you been on any meds these past 5 years?
And my other question and also something that might give you hope - have you seen a post on tinnitus talk by a user that had tinnitus for 30 years and it went away after he started taking TPP (a version of B1 vitamin?)
https://www.tinnitustalk.com/threads/thiamine-pyrophosphate-tpp-stopped-my-tinnitus.13673/
I will attempt to briefly tell you my story and my current theory.
Back in July I took several doses of an anticholinergic medication, a muscle relaxant. Took it for three days in a small dose, got tinnitus in both ears after 3 days. In addition to tinnitus, I got severely dry mouth, later also dry eyes. Spent a few months trying to undertsnad how those things could possibly be connected.
My tinnitus and dry mouth (which actually went away recently) seem to react to almost any medications/supplements that I take. There has to be some sort of explanation and mechanism behind this.
Anyway, while researching dry eyes on reddit, I found a user that said that a supplement called Alpha GPC helped them and cured their dry eyes. This is basically a choline supplement. Choline is a building block of acetylcholine, a neurotransmitter that sends messages to nerves and muscles etc. I found in my research, that it's acetylcholine that "tells" your mucus glands to produce liquid, such as saliva or tears. This again made me think that something must be on with my acetylcholine because like I said, my tinnitus came together with dry mouth and dry eyes.
Have you ever looked into choline supplements? How is your diet? Are you eating enough choline?
The other aspect of this is acetylcholine needs other things aside from choline, and that's where that guy from tinnitustalk comes in, who was helped by B1. B1 is necessary for acetylcholine formation. Interesting point is that that guy had been actually taking B1 before but in a non-coenzymated form and it did nothing for him, but the special coenzimated form got rid of his tinnitus.
My theory as you can understand is that something is going on with our cholinergic systems. We took anticholinergic medications which are known to deplete acetylcholine from your system as far as I understand. Now something is going on and we need to restore that balance. Medications deplete acetylcholine and they also deplete thiamine (or B1) - so that's another hint. I don't know about you, but my tinnitus reacts to almost any medication or supplement that I take - magnesium, vit D, proton pump inhibitors etc, almost any medication makes my ears tighter and tinnitus louder.
The mechanism of this, I believe, has to do with endolymphatic fluid. Just like with your mouth and eyes - acetylcholine is needed to create saliva and tears. Same in inner ear, quite possible that lack of acetylcholine causes imbalances in fluid balance and that causes tight ears, hyperacusis and tinnitus.
What do you think? Have you explored any of these avenues?
