Four months off psych drugs, still healing from withdrawal syndrome

So it’s my fourth month anniversary. As it was approaching I thought I wouldn’t be posting anything for it, since after a bit of a good spell things had turned for the worse and I didn’t want to share. But then I ended up posting to the benzo boards and then again sent the post to three long-time recovered friends as well for support and encouragement. So without intending it, I once again have a post.

My lament at the beginning, was not something I initially wanted to share with the public at large on this blog, but once again the promise I made at the inception of this blog to show the warts and all of this process is prompting me to share this too.

I got many wonderful heart warming and helpful responses as I always do when I seek help from others who are in the trenches with me or have been there in the past. Again, as always, no words are printed here without the consent and permission of those whose words I share.

I need to define two terms that are frequently used in the benzo groups.

“Windows” are periods of relative well-being after having been very very sick. For some people they are “normal” periods, for others who are struck harder by the withdrawal syndrome they are simply periods of some improvement. Windows often come and go throughout the tapering and the post withdrawal period both.

“Waves” are markedly worse times and they also come and go, more often during the recovery process. I should note that my windows at this time to any healthy person would feel like being quite sick. So,  we are talking relative here…if I can go out into the world for half an hour before needing to get home and lie down due to dizziness and exhaustion, that is a HUGE improvement over needing to be in bed all day everyday save trips to the bathroom and kitchen.

Not mentioned below because it was written from the despair of a “wave,” is that I’ve been able to walk more regularly, though not daily, including short walks around the neighborhood. I think twice I’ve taken 15 minute walks which is pretty major. I continue to go into the yard almost daily and photograph our garden. The flower above is from our garden. I also, when able use dumb bell weights and a stationary bicycle for a minute or so at a time.

That being said, I’ve not gotten any better physically since the writing of the below message. In fact I’ve been very ill and unable to do anything mentioned above. My perspective improved somewhat after listening to the collected wisdom of my peers who are at various states of recovery is all and actually at last edit I’ve gotten even worse. I’m not as stuck in bed in the same way anymore, instead laying down hurts too much and being up is too exhausting. Catch 22 hell. This is a long and hellish haul. Stevie Nicks (vocalist for Super Tramp) went through this and once said, “I thought someone had opened the door to hell and pushed me through.” That’s simply said and quite accurate to those of us here, though what “hell” means to most is varied and “normal” folks cannot conceive of this hell. I can say that everyone I’ve met on these withdrawal boards emphasize that what we go through to get off these drugs is MUCH MUCH WORSE than anything for which any of us were ever medicated in the first place.

So now to the posts from the board.

I wrote to the benzo board:

I’m so tired and sick again. I had a few good days and now I’ve returned to hell. I know about the fact that recovery isn’t linear but when you spend over a year in bed unable to leave the house and before that two years just generally ill and then you get a small taste of freedom again…

I got my driver’s license back a couple of weeks ago and drove very short distances (no more than five minutes one way) and ran very small errands four or five days in a row over a week ago now. Granted up until day five I was still in bed more than out of bed but then on day five I actually did stuff like unpack boxes (we moved almost two years ago, but I was too sick to unpack even then)

It was so exciting to do normal stuff! Washing dishes was a joy…doing laundry: sublimely beautiful…

So to crash into hell again unable to get up without extreme dizziness and nausea and pain is so disappointing.

I also feel like a freak that fits in nowhere. I’ve been at this for several years. I’m only 4 months clean in a couple of days, but I’ve been hanging out in withdrawal circles for close to 4 years…been withdrawing myself for over six years…

I”m sick of all of it…I’m not surprised people move on and do other things after they no longer need the group anymore…I’d really like to…

I kind of know all the “answers” from being around so long but still need help and support…it sucks.

Thanks for letting me get that off my chest. Any suggestions of how to reframe what I’m dealing with right now would be much appreciated.

A response:

Post taper is possibly the hardest time of this entire process to endure; there’s no longer a taper to help explain away the crazy, debilitating symptoms, and once one puts some time in away from the drug(s), it becomes rather difficult to accept that there isn’t some kind of disease process (or whatever) at work there, or that the sudden regression many experience is a sign that they might be that way forever. As human beings, I think we inherently gravitate in our thinking toward the expectation that our healing is going to take place linearly, when in fact it rarely does. I know you know that, but when you’re in the thick of it, it’s as if the brain can’t process what might essentially be seen as an illogical thought.

Here’s another thought to consider:

You have traveled one hell of a long road to get off the drugs you were on, longer than most I know. Not only have you faced all of this with incredible bravery and fortitude, you invested considerable time and effort in educating yourself and others along the way. That speaks to the remarkable inner strength you possess. Most would have tossed in the towel long ago. No amount of knowledge is going to make this go away, however. It’s a process that simply has to play itself out and only until things begin to ‘right’ themselves neurologically, will the sun begin to shine for good. We can intellectualize this deal till the cows come home, but that does nothing in terms of staying off that typical waxing and waning of symptoms that characterizes this kind of withdrawal. Out of all the things one can experience getting off these drug, I think this is perhaps the cruelest part- after months and months (or as in your case, after years) of enduring the taper(s) from hell, to experience a reprieve in symptoms only to be thrown back into hard withdrawal again must feel almost abusive.

One thing that was helpful for me to remember was that my symptoms were actually a sign that I was healing, not regressing. Rarely if ever does healing occur without some form of pain, be it physical or emotional or what have you. When we experience a resurgence of withdrawal symptoms, the knee jerk reaction is to think we are getting worse. See if you can’t find a way to think of these more trying periods in your withdrawal as having a positive presence, as evidence that you are actually getting better, not worse.

Another thought-

For those of us who went off copious amounts of drugs, it seems logical if not expected that our recovery period is going to be that much more difficult and perhaps more protracted than those who went off only one drug. Regardless of the number of drugs, dose, time taken, or how one happens to get off, there’s no way to predict how anyone is going to fair or how long it will take to recover. I would have made a perfect poster child as a likely candidate for a protracted withdrawal (grossly poly-drugged for 20 years, cold-turekey’d off 8 extremely high dosed drugs over the course of 1 month, for starters). As it was, the worst of my withdrawal seemed to fizzle out around 5 months out. Now at almost 4.5 years out, I still have a hand full of symptoms, but nothing I can’t live with. But here’s the interesting part- however slight it may be, I am still experiencing some improvement. The message here is to try and avoid making hasty assessments for some time to come for what is likely signs that the brain is still healing. In other words, what you are experiencing is normal. I know you know this already. Still, it’s often a hard one to accept, and equally hard to hear, but there you have it.

I was excited to hear that you had a fairly well-defined window. Like the more difficult waves, this too is a really good sign, Gianna; it would appear that you are starting to come out of this ordeal, if only the beginning stages.

I don’t know if anything I said here is helpful to you. Just know that what you are experiencing is normal given the circumstances, and as difficult as it must feel to be thrown back into the trenches, know that this is sign that you body is once again busy with the task of healing itself.

Another response:

Hi Gianna, I too got a lot of back and forth, in my 4th, 5th and 6th month. Very discouraging yes. You think you’re out of the gates, over it, then boom. However, it is getting so much better, the longer I’ve been off. My last step back lasted just over 10 days, then the new level is way better. Less painful, hardly any symptoms, a new easier plateau, that’s what’s keep happening every time a rough patch passes, and what keeps me going. Cause you really start to notice, the lessening of everything. The rough patches get shorter, less extreme, the new plateau is so much easier. I have felt a mild resurgence wanting to hit. Little things here and there. 7 1/12 mos out. Guess what Gianna? It’s losing the fight. It’s not coming through to a full hit. It’s not coming through, though trying. Same thing is going to happen to you. Exact same thing. You have come such a long way and I’m hugging you through the computer. There will be a time sooner than you think, where you feel a strong resurge trying to come through, and it just doesn’t happen. That’s just around the corner for you.

My husband said the following when I shared the above quote with him. And I liked this too.

“I think it’s good the way she is implicitly framing this as a struggle between you and the beast. The beast is strong and ugly — but it’s getting weaker. It’s losing. You are stronger than the beast. As it runs out of energy, you gain energy. You will eventually slay this thing. It’s like a Hydra except it can’t grow new limbs, so every time you chop off a couple of its limbs, it’s got less to grab you with.”

And lastly, a comment from a body worker who is also on the boards:

I do have a lot of knowledge and wisdom about bodies in general; I’ve been working on bodies for 35 years now, doing massage and bodywork, and I’ve worked with people in all stages of recovery and physical healing. I also have the education to know a lot about biology and the deep processes of our bodies, which I incorporate in my healing work. And I feel that I can say with some confidence that after being bedbound as long as you have, what you did during your “window” actually was more demanding on your body than you are giving it credit for. If you were a client of mine I would have recommended that you try to pace yourself more. Your circulation, your connective tissue, muscle, bone, strength, endurance, all of that has changed more than you realize. I think it’s pretty reasonable to assume that part of the crash was simply due to your bodymind needing to recuperate and rebuild after the new demands.

I am forever grateful for the deep collective wisdom of those in the withdrawal circles I’ve discovered during this process.

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters