Nine years on, just to say: there is hope

Hello, all -

 

In the summer of 2012, and somewhat beyond that, I was a regular participant in this forum.  My situation was less complicated than many others I found recounted here, but I was thoroughly conversant with the horrors that even a short encounter with clonazepam can invoke.  It had been prescribed to me off-label, the previous spring, for acute insomnia arising from a protracted pain issue that a series of doctors had been unable to figure out, diagnose, or treat (the cause never was identified).  Clonazepam briefly alleviated the sleep problem, which had reached the point of madness--I truly felt psychotic.  Sleep-deprivation psychosis, however, was nothing compared to what lay ahead, once clonazepam entered my life or--more to the point--when I tried to get off the stuff (a process as to which I'd received virtually no help from representatives of the medical-industrial complex).  I probably don't need to go into detail--you guys know it all: the misery when you lie awake all night, sometimes shaking uncontrollably, and maybe you fall into a fake-sleep doze for half an hour, before it's time to get up and take care of the child(ren), the dog, the spouse, the job, and so on; the bizarre and seemingly random pains that crop up, whether burning patches on the skin or debilitating agony in the joints or . . . the list goes on; the terrible fear and despair, the sense that you're falling through an abyss and can't get a handhold or a foothold; and all the rest.  In my case there was also dramatic weight loss, to the point where my family became alarmed.

 

Knowing my own sensitivity to medications, I took a much smaller dose of clonazepam than the prescription indicated, and I took it only at night--it knocked me out, so there was no reason to take it in the daytime.  I didn't want to stay on it for too long, so after a couple of weeks I started trying to "taper" off--that I needed to taper was all I'd been told, nothing about how to do that properly.  That's when the real nightmare began.  Pretty soon I was back on the stuff, just to get some sleep.  Only a few days, and then I tried again to liberate myself, with results, if anything, worse than before, and back on the drug I went.  I consulted a series of doctors to describe what was happening, and never did I get any advice other than (a) here's some other medication to treat the symptoms you're saying (not that I believe you) are caused by the drug you're already on, or (b) just keep taking the clonazepam (shrug).  The doctor who'd prescribed the clonazepam in the first place, far from addressing the real problem, wrote a script for Celexa, and I was so desperate by then that, even though I deeply distrusted SSRI's, and had never taken one, I almost filled the prescription; my husband begged me not to, and in the end I shredded it. The doctors' advice left me enraged, but as helpless as before. 

 

Finally, I signed up for a course in mindfulness meditation, and that--in addition to the steadfast support of my husband, my nonagenarian father (who called me every single night), and my sister--was my salvation.  Even though I still didn't know how to taper correctly off the benzo, the meditation class helped me develop the right frame of mind to get off the drug even by tapering incorrectly, and to survive the horrible side-effects I had come to realize I would simply have to live through if I ever wanted to have my life back.  By some time in September I was benzo-free, and before too much longer I was getting at least a couple of hours of sleep each night--a huge improvement over the way matters had been previously.  (Other things that helped with sleep, by the way, were warm milk, melatonin and the use of a sleep mask: the three M's as I referred to this combination.)  I had to stay away from alcohol completely, and I had dropped most of my usual regimen of daily nutritional supplements, having read that those can feed the withdrawal symptoms--I still took calcium with vitamin-D, and acidophilus, but that (not counting melatonin) was it.  By Thanksgiving I felt semi-normal again, but I stayed off the supplements, and didn't drink.  New Year's Eve I had a small glass of champagne--I paid a price for that, but not a huge one.  By June I was back on supplements like turmeric (for my joints), vitamin-B, and one or two other things, but around that time I started to feel as if I was having a flashback to the benzo-depression.  I searched around on the Internet and found a lecture by a professor/researcher who had done field work in Papua New Guinea, where the aboriginal diet consists largely of fish, and depression is all but unknown.  Back in the States, he ran a study comparing three groups (if I remember right): one on a regimen of fish oil, one on Zoloft, and one on a placebo.  The group taking fish oil fared the best.  I found his evidence persuasive, so I started taking a high-quality fish oil supplement--and it seemed to help.

 

I have not taken a benzo in just about nine years, and have no intention of ever touching the stuff again.  Just in general, I dislike medication, and use it sparingly.  At the moment I am dealing with the extremely painful aftereffects of two accidents--one in early April, when I fell down a flight of stairs, and the second just three days ago, when I tripped over a bramble while out gathering wineberries; in neither case did I dare go to the hospital or even a doctor's office, because of COVID-19, the multiple co-morbidities among our household members, and my resulting terror of contagion--so I have been struggling to heal on my own.  The first injury (rotator cuff) is still fairly bad, but I had just achieved what felt like an encouraging milestone when I fell the second time . . . and nailed the other shoulder (with damage to the trapezius this time, I *think*).  Particularly with recovery from the first fall (jury's still out on the second), I found at times that I was experiencing symptoms that felt a lot like some of the more mystifying kinds of pain my efforts to kick clonazepam invariably delivered--I don't quite know how to describe it: sort of as if every nerve ending in my back had gone haywire, and was pinched and screaming.  I found this upsetting, but all I could do was apply ice. Meanwhile, post-second-accident, I'm back on Advil, after having been off it for two months; I have also resorted, with extreme caution and only rarely, to some not-yet-expired codeine tablets we have left over from a dental procedure.  (Codeine does not invariably help me, which is probably just as well; not finding it entirely reliable, I don't expect to develop an addiction.) 

 

In a way, I feel as if I am not qualified to offer advice here, particularly as I know that many Buddies are up against multiple prescription medications and/or a far more protracted struggle with these medications than what I went through.  So it is only with that proviso--i.e. my awareness of how different and more challenging many people's experience of benzos and other corrosive medications may be relative to mine--that I suggest that there may be strength to be found in unexpected quarters.  Besides familial support (which I also realize not all of you enjoy), mindfulness meditation was my godsend.  With this new ordeal, I've found controlled breathing--of the type sometimes specifically defined as "coherent breathing"--can be helpful.

 

One unfortunate souvenir of benzos that has stayed with me, and to which I have simply had to adjust, is 24/7 tinnitus.  Mostly I just tune it out; once in a while the volume cranks up and my ears scream annoyingly for a few minutes, but then the noise subsides to its normal level of buzz.

 

So there is my story, as concisely as I could render it.  I wish everyone strength and comfort as you cope with benzos and/or the recovery from your encounter with them.  I hope all of you, if you haven't managed it already, can find your way to liberation from the tyranny of these medications.

 

Peace,

 

Rek

Thank you, thank you for writing your story, just yesterday I received a PM from a member who's wife is 10 years out and losing hope, he asked if I knew of any success stories she could read and here you are! 

 

Thank you too for letting us know what worked and what didn't, there will be many who will read your journey and be able to learn from your lessons.

 

Pamster

Yeeks, I can’t believe failed to mention, in my previous LOOOONG post, that OTHER godsend during my benzo ordeal and recovery: Benzobuddies!  The support and encouragement I found at this site were unbelievable, and I remain intensely grateful for it. 

Rek,

 

Thank you so much for this post, you will be an inspiration for those still in the process. How lucky for you to have such an amazing support system!!  You did a lot to find ways to deal with the aftereffects of benzos and withdrawal, good for you.

 

I wish you all the best, you deserve it, and I hope your physical issues resolve. I know ALL about rotator cuffs.

 

pianogirl 

It is discouraging to read that you still have tinnitus 24/7.  I am over 4 years out, and my tinnitus is still raging.  I'm scared.  I can't live with this the rest of my life.  :'(

Hey, folks -

 

Replying here jointly to Pamster, pianogirl, and iwsth.

 

Pamster, thank you for your lovely response!  My heart goes out to your friend's wife who is having such a hard time.  When you say "ten years out," do you mean ten years still medicated, or ten years off the medication, but struggling to achieve equilibrium?  Either way, I hope she will find her way--if my message is to any degree helpful, it's the absolute least I can do, considering the incredible moral support I got from so many people here at BB.  All best and most hopeful wishes to you and your friend and his wife!

 

pianogirl, I'm pretty sure I remember seeing your name here 'way back in 2012--my hat's off to you for your continued commitment to this community!  Thank you for your kind wishes as to my recovery from recent injuries.  Yes, rotator cuffs--sigh.  I'm sorry to hear that (as I take it), you too have had your woes with that particular affliction.  I heard from various people over the years how awful rotator cuff problems could be, but always hoped I would never find out first-hand.  And now . . . voilà.  One thing I can be thankful for is that, before these two successive accidents happened, I had long since learned a hard and unforgettable lesson about the hazards of strong medication, and I know that, for the most part, I have to rely on other means of healing.  Thank you for replying to my post, and be well!

 

And to you, iwsth . . . I need to be a little bit careful about what I say here, because I don't want to sound preachy: such an an easy trap to fall into.  First of all, I'm really sorry about your tinnitus, and that it feels so intolerable.  Tinnitus stinks, there's no doubt about it--I wish I could get rid of mine, too.  I think that, for me, it came down to a matter of perspective.  As disagreeable as the tinnitus is, I find that it's nothing compared to what it was like being on and coming off of clonazepam: it's difficult for me to imagine any sort of agony approaching that.  So I suppose I kind of accept the constant ear-buzzing as the price I pay for being otherwise free of benzo symptoms.  I know that's not easy for everyone, though--I get it.  It's especially hard if the buzzing keeps you awake at night--is this the case for you?  That would certainly complicate things.  The only advice I can offer--and I offer it with the caveat that, if it annoys you, you should ignore it--is that you try (if you haven't already) something like mindfulness meditation and/or deep breathing.  If the tinnitus is horribly distracting, then it makes these kinds of approaches (meditation, breathing exercises) that much more of a challenge, I realize, but maybe there's a way also to use the tinnitus as a way of finding a focus for the activity.  The easiest way to do mindfulness meditation is by taking a course--which these days, with with COVID-19, pretty much means going online, but I believe there are plenty of online resources.  If there were any sort of exercise, whether meditation or breathing, that could guide you to a different way of thinking about the tinnitus, so that it didn't seem like such an implacable enemy, that might represent a kind of solution.  I just don't want you to give up hope--your stupid tinnitus does not deserve to have that much power over you!  If you can, try to find a way to take power back from it, and find the strength you need to make whatever adjustment is necessary.  I don't know what else to say, and I don't know whether these words are helpful at all.  Fingers crossed for you!

 

Hugs to all -

 

Rek 

 

Rek,

 

I appreciate your reply.  I'm angry because my tinnitus was caused by withdrawal, and it's frustrating to read that people consider themselves healed even if they still have tinnitus.  I won't ever consider myself healed unless the tinnitus disappears.  If it doesn't, then I will have been permanently damaged by a benzo.

 

I do practice meditation and deep breathing and have to listen to background noise most of the day and night to cope with the tinnitus.

 

Also, I have been dealing with a burning mouth for over 8 years (which started prior to the benzo), so I'm exhausted from feeling uncomfortable 24/7.  I just want my life back.

 

iwsth

 

 

Hi, iwsth -

 

I guess there isn’t much more that I can say to help, especially since you’re already doing breathing and meditation—I wish those practices were doing more to help you cope with the tinnitus.  Maybe part of what makes me sort of philosophical about the ear-ringing is my age—I’m sixty, so I’ve known for a while now that things were going to start to go kaphlooey.  And yeah, this particular system-gone-haywire is, at least mainly, thanks to the diabolical benzo.  I’ll still live with it, and consider myself healed, because what I fundamentally needed, and what for a while I was afraid I would never achieve, was to get the fanged horror off my back that was so vicious and awful it made me question the point of being alive.  When I had I had finally kicked that monster back into the swamp it came from, and knew I had won the battle the doctors couldn’t be bothered to help me fight, I did have my life back, as far as I was concerned.  Sometimes even the most successful healing leaves scars behind, so you could say, if you like, that tinnitus is my benzo-scar.

 

I am sorry.  I wish your tinnitus would go away.  Maybe someday a remedy will be found.  Meanwhile, I hope you will somehow be okay.

 

Rek

Thanks for your encouragement.  I am also sixty years old and feel I don't have many years left.  I know that my health will deteriorate naturally, so I was hoping for a few more good years before then.  The benzo and doctors have taken that away from me.  :'(

I am so sorry, iwsth.  I want to say: Don’t LET the doctors and the benzos rob you like that.    But, I know, it’s far easier said than done.  I hope at least you have some supportive people in your life!

 

Rek

People really underestimate tinnitus. The ringing can literally drive you insane. My ears have been ringing for 9 months since I C/T from Clonazepan. Please god have mercy on me 😪