a lifetime of decisions, and a long weird path back towards reinstatement « on: July 17, 2019, 06:37:35 pm »
I had initially kept this post to a handful of staff members, but was encouraged to feel free to make a more public post.
Put simply, I am back on benzodiazepines after an extended period off, and while I have deep reservations about this, after eight months it does not yet seem to have been a mistake.
Abbreviated backstory: I was on benzos for a number of years in late adolescence / early adulthood for anxiety based reasons. I had mild tinnitus at that time (possibly attributable to many things, including a distant history of childhood ear infections). Tapering was brutal and took me 14 months, and I wrapped that up sometime in 2005. I don’t recall tinnitus ever being a problem, except briefly during parts of the taper.
In 2010, an acoustic trauma did some significant damage to my auditory system, the tinnitus turned into a wailing monster, and I used benzos again for about a year before tapering again. I spent 2011-2015 basically miserable, highly functional but chronically consumed with the violent, often painful, extremely high pitched noise in my skull. I tried all kinds of things; if there is a supplement, drug, medical practice, massage practice, alternative medicine practice that someone on Google says helped their tinnitus, I probably tried it. I also tried doing “nothing”; I learned to meditate. I learned to sleep with earplugs in spite of the noise. I spent a lot of money; I spent $10,000 to be a lab rat in one clinical trial alone (lots of travel involved).
I remain hopeful about the tinnitus treatments that are in the pipeline, but a little voice continued to say “I need to do something now”, as my life sort of passed before my eyes. I achieved significant professional success. I was able to relocate out the city to a pristine, quiet area in 2016. This did all make me feel better in some ways, but still the noise.
In late 2015, unrelated medical circumstances forced me to consider short-term PRN use of Valium, and, of course, I discovered that it still “worked” as far as taking my mind off the tinnitus. From early 2016 until November of last year, I used Valium PRN; when the tinnitus would become absolutely intolerable, I would take enough to knock it way back (usually 10-20mg over 24-36hrs), and then try to not do that again for 3-4 weeks. I became a parent over this time period, and I realized that the times I was the most medicated were also the times I felt the most joy and connection with my child. By July of 2018, I was agonizing over the idea of reinstatement, but I wasn’t sure.
I made a list of every possible tinnitus remedy that seemed reasonably attested which had not yet been attempted. It was a pretty short list which included some out there ideas like “cervical chiropracty” and “microdose psilocyban”. None the less, I crossed these items off my list as I tried them. Finally, in late November of last year, well supported by a medical team (including a prescribing doctor who is deeply aware of the hazards of benzos and necessity of a slow withdrawal), I elected to resume daily benzo use. After 2 weeks at 25% of the dose I’d previously been on long term, things felt very bad; more or less, I felt like I was in withdrawal, and I almost aborted the experiment then and there. One of my medical team persuaded me to at least attempt my full prior dose for some period of time; I also elected to supplement it with gabapentin based on some research into the combination for tinnitus specifically (and the general observation that gabapentin is much less scary than benzos, so if it can be used to supplement a benzo dose and reduce benzo consumption, that’s probably a win).
More or less I had a one month “honeymoon” where life seemed too good to be true, and as expected, that faded as tolerance became obvious and peripheral side effects also vanished. However, what I am left with, so far, is a life which is much more manageable. It’s hard to put numbers on things, but the tinnitus is more distant, it’s generally less disturbing when it does get my attention, and I’ve been able to make significant progress in my family life, in my professional life, and in therapy, which had been blocked by the state of utter discomfort, misery and despair that my tinnitus had thrown me into. The general observation of my spouse is that I am easier to talk to, more likely to listen to them, less likely to snap, and more likely to be sympathetic and caring in general.
To make a few things clear:
This was my choice and I would not encourage anyone else to do the same thing. No one’s circumstances are identical. For all I know, my use of benzos during developmental years caused problems that couldn’t self-fix, and if not for that I might not be in this situation at all. Likewise, if I had taken better care of my ears, or had better genetics around hearing, tinnitus and anxiety, I might not be in this situation. But, that doesn’t matter: the way things are, is the way things are.
I do not know the long term results of this (and neither do you) – I waited more than six months before posting this because I wanted to be sure a beneficial effect that outweighed my reservations about benzo use, would persist for some period of time after obvious tolerance had set in. It’s entirely possible that this will “stop working” at some point, and I will be left with my generally terrifying tinnitus on top of having to do another taper. But, it’s also possible that won’t happen (one of my family members has taken Klonopin with no loss of efficiency for more than 15 years) – and it’s further possible that some of the tinnitus treatments which are currently in the experimental or early marketing phase will turn out to be extremely effective, at which point attempting another taper might seem very rational to me.
I agonized over this decision more than you can possibly imagine over a five year period; eight months in, it’s given me eight of the best months of the last 10 years of my life. I am happy to answer any reasonable questions, but I ask that you respect my right to autonomy and decision making over my own body.