Hi
@BenzoMom,
I have been meaning to write to you in the other thread (severe hyperacusis in benzo withdrawal) as I have very similar symptoms as you. I have had a difficult relationship with benzo for many years. A love/hate relationship i suppose.
I´ve had a start-stop relation to it for years, short acting and long acting kinds. I was committed for it in 2012, but thought I was out of it. Alcohol probably made me relapse and the stress from getting tinnitus in 2014 made the withdrawals all come back like a bang. As I found it helped immensely for my tinnitus I haven´t been able to leave it alone these past years. I tried to be smart about it, but still I realized some months ago I was becoming tolerant to 10-15 mg of Diazepam. It would not give me the same relief anymore. Since up dosing is out of the question, because it scares the hell out of me and probably wouldn´t help either, you realize you have to taper off of it. Again
.
Like you I have insanely painful hyperacusis or noxacusis since tapering. And how do one taper from intermittent use of 10-15 mg, but suddenly you find yourself needing it every day. I have written A LOT about benzo on this forum. I know a lot about its mechanisms on our CNS, still I feel like an idiot. I always knew it wasn´t a viable option still I couldn´t stop taking it because it is gives a much needed break from this fucked up condition we have.
I have chosen to taper fast. I´m already down to 2 mg and I started tapering in mid June.
My tinnitus is insanely ultra high pitched and even though the volume is reasonably low it is HELL.
I mask it all day long, through my TV or with bone conductive HP all day long apart from when I get some short time relief from either
Flupentixol or
Baclofen.
Still it is the noxacusis that kills me. I can´t tolerate even normal daily sounds. When I go out of my bed, where I spend almost all of my time I have to use serious hearing protection only to pee or make myself some food in the kitchen. Even the sound of my bare feet on the floor can shoot like electrical needles through my brain. Very painful. indeed. Luckily (or not) I don¨t have to deal with any kids or any people at all. I´ve totally isolated myself the last 2-3 years as I feel nobody understands what I´m dealing with. All I have is my dad ATM.
The withdrawal have made it much worse, but it was not easy before either. I can´t tell before I´m on the other side of it how it will end up. I feel from experience, when I have managed to be without benzo for 1-2 months (which I have managed twice these last 5 years) the pain will abate some. But it feels like it takes a lifetime to figure it out. Like for many both my tinnitus and hyperacusis fluctuate too, so it´s hard to get what does what in the end. I do not think it would be this bad if we had totally healthy ears either. Question for me is, when I´m truly free from withdrawals, will it be enough?
In addition I suffer with the usual symptoms, like tremors, anxiety, depression, body aches, restless legs, fatigue and despair. I only manage to sleep because of Mirtazapine and Melatonin and I keep my racing hart at bay with beta blockers.
I´m sorry you have to go through all this as well. I have found some comfort in your posts and let's just hope when on the other side of it we will be able to cope better with noise/sounds than we do now. This is no way to live. Thinking about sound every second of the day. Just looking at a plastic bag or the faucet sometimes send shocks up my spine because I know the sound of them will be excruciating.
When it comes to the procedure I will have (SGNB) on the 25 of October, I can only hope it will give me some relief. I applied for it in March btw. They like to have you wait in Norwegian healthcare, especially if you are really in pain.
It´s not a steroid they inject, but rather a nerve poison or anesthetic like lidocaine or botox.
I should hear with Ms. Westcott what she has used. Even though they will give me the injection, I don´t think they have any experience with it regarding hyper/noxacusis. I also have a feeling that even if it helps me, they won´t administer me with it again so I would have to find a private doctor to do it maybe, I don´t know. I live in one of the worlds richest countries, but our healthcare system is fucked up. It´s very rigid and lacks any kind of empathy IMO.
I don´t know if I answered any of your questions. I have been to sick to post anything on this forum the last couple of months and now since you approached me I just pour it out. I need hearing protection just to type on my keyboard as well.
I hope we both will come out of this with our life. I´m pretty sick of it all after 5 years.
I´m also scheduled for Lenire in December and I find a lot of hope with Frequency Therapeutics. I must live to see the results of phase II.
All the best!