I am far from healed. Actually, I am rethinking the word “healed.” I don’t believe we “heal” but I do think we get better. Matt’s recent setback, Colin’s permanent limp, Reggie Peart’s story…makes me think that we may always have something to remind us of this part of our journey here on Earth. Frankly I don’t believe I will ever stop tingling all over. If I do, that will be awesome. If not, I am learning to live with it.
As I continue to “get better” (even though I am in a wave at the moment) I focus on getting back to work. I have a lot of catching up to do as well as a lot of reinventing. I will still blog here, of course, but my energy will be primarily focused on earning a living once again.
Would anyone like to help me blog here? Eventually, I hope this site will be turned over to someone who wants to take it on, and then as they heal, to pass it on… and on…
I am NOT closing the site. You have been so generous with your donations I was able to pay for the site to be running for another two years. *Thank you!*
I am simply exploring how we might make better use of the site as my energy goes towards other venues. I think having more bloggers may be a good thing. What do ya’ll think?
FYI, I still talk to a few people via phone and I email everyone who reaches out. That will not change.
Please let me know what you all think and if anyone wants to help me blog, let me know.
I pray for you all every day.
Keep the faith.
Jenn
That makes me very sad that you believe we don’t heal. Thats was the only hope that has gotten me through this mess. I didn’t realize these people hadn’t healed. Linder
This makes me very sad that you don’t believe we heal. That is what has kept me going these last couple of years. I didn’t know these people hadn’t healed.
Linder I believe we get better. I don’t think we heal 100%. Or at least some of us do not. Whether it is from damage from the drug itself or the trauma of Wd I don’t know. But certainly some of us keep some degree of symptoms. Bliss may disagree with me, and I’d love to hear from her about this. She has not returned emails or phone calls unfortunately.
Even if we have some lingering symptoms I believe we can reclaim our lives. Reggie Peart said many many years out from his last ct that his sx were either gone or were mild enough to be incorporated into everyday life. That’s good enough for me. If I never stop tingling it won’t be the end if the world. I hate it, but it won’t stop me from living my life.
Matt’s setback makes me realize we have to always take care of ourselves. We may never have a string CNS or immune sx again. That’s ok. Just take things easy. :).
I don’t mean to sound gloomy, but I think it’s good to face the truth. And that truth is for me is that total healing may not happen. If I’m proven wrong I will be delighted. But if I am correct, I will not be crushed either.
At 28 months out and no let up on tingling I can’t see how magically it will go away. But maybe it will.
I am out living my life as best as I can. I’m
Not housebound. I’m not living in fear or terror. I’m not depressed for the most part. I’m better. I’m so much better than the first year off. We do get better. 100% healed. Not so sure anymore.
“At 28 months out and no let up on tingling I can’t see how magically it will go away. But maybe it will”
From what I have seen since the start of my taper almost 3 years ago, it is par for the course to experience lingering problems at 28 months out. My first hand experience explains to me that the 6-18 months average recovery time, more likely is closer to 3-5 years, until all symptoms are gone. Some do not catch any real breaks in the first 2 years off benzos (others recover within a couple of months)
It is hard to believe that a persisting symptom will go away, but still to suffer from the quite famous benzo tingling at 28 months out, is indeed in the normal range for complete recovery to happen.
Just my 2 cents 🙂
Hopefully years from
Now I will post a 100% healing story. But if not, it’s ok.
I’m living my life as best as I can. I’ve let go of the expectation of a full recovery and I take each day as it comes. I’m not going to be crushed if I still have lingering sx years from now. Some of the success stories on recovery-road.org talk about the re-emergence of sx here and there.
Ill be happy to have all of this go away. But I’m
Not letting it stop me until it does. Thanks for your comment.
Dr. Jen,
I would love to blog about my experience with benzos! I am still on them but I have gone from 120mg Valium to 30mg in the last two years. The early cold turkey is much what u have described in your blog posts..the tingling, muscle pain etc. I felt like I couldn’t stand, I was extremely panicky, nervous with really blurred vision and muscle spasms so bad it made it hard for me to swallow (I think that was the worded of it all), and the fact that it was hard for me to say what I thought in my head (I relate well to Matt’s story).. I couldn’t form words and when I did things came out jumbled.
I reinstated so that I could function and threw cold turkey out the window..I am on a very slow controlled taper and even at the dose I am now I still find myself panicky over things that bothered me in my cold turkey state..I am petrified of elevators and being in enclosed stairwells..it makes it hard for me at work..I work on the fourth floor! I still struggle with lack of sleep and muscle pain but not like I used to. I know this could return when I have completed my taper and I am prepared for it.
I don’t view it as a matter of incomplete healing. I believe we get hung up on the whole concept of “100% healing” when there is no way to know whether we are 100% healed or not. For example, I have been off Klonopin for 38 months now. Even if I had never been on Klonopin, I would still have experienced some changes in my body during those 38 months. Such is aging, and the changes would likely not be positive. Most of us in w/d have passed our physical prime years earlier. We are generally physically in decline. I have no way of knowing what that decline would have been for me. It’s impossible to know. So there is no way to compare my current condition to “what it might have been without benzos.”
I prefer to look at my healing more realistically and in a more quantifiable way. When I look back at who I was before w/d (even pre-benzo) and compare that person to who I am now, the differences are astounding. I am a drastically improved person. I am happier and more positive than I have been in my entire life. In fact, I am happier and more positive than anyone I have ever known. Nothing gets to me anymore. The fear and dread that ruled my life even pre-benzo is gone and has been gone for nearly two years. I have improved in countless ways. If I had to put a number to it, I am probably a 100 times better human than I ever was. Does that mean I am healed 10,000%? I think so.
I view lingering s/x as “reminders” of what I endured to become 10,000% healed – kind of like scars. I do have lingering tinnitus and will occasionally get some minor burning. They are scars that will continue to fade with time.
Would I be more satisfied if I was exactly as I was pre-benzo with no tinnitus and no occasional burning compared to how I am/feel now (100% healed)? Absolutely not! I am healed more than 100%.
One other huge part of this is the knowledge that I have endured the most obscene suffering I can even imagine. I have survived it. I am thriving in its aftermath. It is something I can always use to remind myself that I am incredibly strong and can face any other problem in my future as though it is child’s play.
We heal more than 100%…..in time. I am 100% certain of it.
Keep the faith Little Sis.
I knew this was you before I got to the end! I smiled when I saw the signature. I agree that I am Better than pre k. I let SO much roll off me now. The anxiety they gave me k for doesn’t exist. Not at all.
I’m not hung up on the word heal. I’m not going to be crushed if I still burn, tingle etc. forever. That’s ok. I do know we get better. I’m getting much better.
I’m not sitting at home. I’m out doing my best to get back into life. I know to listen to my body and respect that my CNS may be fragile for a long time. That’s ok. I’m taking Matt’s setback to heart.
I know in time this will be a distant memory. And like you, I will be so much better. I already am better than pre k in many ways. Having to endure the most horrific mental and emotional Suffering one can imagine, you learn to cope. And I’ve learned to enjoy the simplest pleasures. I’m writing this at 9pm out in my garden cuddled up in a blanket in front of my outdoor fire place. The fire is crackling. My cat just jumped in my lap. Neighbors are waving hello as they walk their dogs. The stars twinkle above. Life is good. I’m broke. But not broken. Never before have I been so grateful for my one wild and precious life.
I don’t know if I will ever stop tingling. And that’s ok. I have dropped my expectations. I will be happy no matter what.
Dear One(s)… I admire your courage and faith! And I am so glad you did not close this site. I also worked w/ Reg Peart 11 yrs ago, successfully tapered from 35mg diazepam and was totally off for 4 mos and things got VERY bad, so I reinstated under his guidance back up to 27mg and now 10 yrs later down to 6mg. The fear is that I am 61 and will not make it again, but I want so much to be drug free. I had been on other forums which were not the best support. I must do this again and I ask for your support or advice esp. since I am older. Perhaps you can help me find connections for phone support and/or email. This has been a very lonely road… would anyone here be willing to be of support… via the phone or email. Please kindly respond. Blessings, CMA christinasonam
Christinasonam: There is a group online on FB that you’re welcome to join us in- good people and a lot of support. https://www.facebook.com/groups/benzogroup/
Hello all; I found this blog quite by accident some time ago; not sure how I “fell” into this space but I am glad I did. Information, support, truth & encouragement all rolled in to a neatly packaged blog post that shows up in my inbox now and then 🙂
I am six years free of psychiatry and their drugs. In 1992 I asked for “help” to overcome a lifetime of abuse. At the time I was in a violent marriage and was told my “anger” was “adult adhd”. I was first started on about 50mg daily of long acting Dexedrine plus a couple of extra 5mg tabs “as needed”. Needless to say – within a very short time my life fell apart.
Benzos were added for the drug induced anxiety and panic attacks. AD’s were added for the depression that came next as a result of the first 2 drugs. The AD’s caused mania that resulted in mood stabilizers. As my brain became overwhelmed with all the drugs – I started experiencing “psychiatric” symptoms that I’d never before experienced and – since getting off the drugs have no longer experienced.
I was completely mentally, emotionally and physically disabled; I gained 70 pounds and lost my health, my home, my family and my life. Over the next 15 years I firmly believed that I had an “underlying illness” that was “exposed” by the stress of escaping an abusive marriage. In 2007 another psychiatrist did a forced washout – this after years of requesting to go off the drugs but told that was not possible because I was ______ fill in the blank; they gave me all sorts of labels/dx. In all – I was effectively lobotomized and put on over 35 different drugs. There were times that I was taking up to 20 chemicals each day because of course the psych drugs caused many physical problems that I was then given more drugs for those side effects and of course told I would need to be on those drugs “for life” as well. Today I take no drugs and am able to physically active with limits.
All that to say – I am free. I live with “protracted wd” in that I too experience better days although even at this stage the tinnetus and paresthesia/tingling is present with me always. Although….as I said…I am free and that is enough for me to learn to live with the residual effects of the drugs on my CNS and brain. There are other issues that are irritating at times but still – I am free of the drugs and psychiatry.
I’m free and if that means learning to take it easy, watch what I eat and do what I can to avert or avoid any setbacks thats all good in my book. And when I have those setbacks…I’ve learned that if I stop and take care of myself that I can generally recover in about 3 weeks. Not often less and sometimes more but I am at the point where i know that it will get better again. There is always the hope for a “full recovery” although I’ve learned to live in acceptance of “what is”.
Grateful to have found this space and will continue to read along 🙂
Susan, thank you for sharing your experience with us all. My heart goes out to you. So many people have been harmed by psych meds. I am glad you are free! I think your attitude of accepting what is, is spot on. I have dropped the expectation for a full recovery and just deal with what the day presents. I may never stop tingling. You are 6 years out and still have it, so I may too. That will be ok. I only want to be able to support myself and have a life full of love and joy. I know I can do those things even if I never recover more than I have now. It may not be the life I dreamed of, but it is still a good life.
Thanks for writing. Stay in touch. If we can be of help in any way, let us know. Your story is very touching. You are a warrior!
Thanks, Jennifer! Much gratitude for your kind words. I totally appreciate your invitation!
At this point I’ve been working to support others in different ways for some time. I’ve had the good fortune to present a few workshops and have created a sort of resources list that I share via a blog that I do among other things. I’m not saying that to be self promoting but to let you know that I’m in a place where I don’t so much need support as I enjoy giving it.
Nameste and good things to all! Its good to get connected 🙂
Don: thank so much for this most encouraging and uplifting post to Jenn. This has given me such a positive outlook for my own healing. On a day not so good. I am 67 and have felt that I would be facing issues because of this and so I might.
But like you, when this ordeal is done, I will be stronger than ever. I was only on benzos for 5 months and off now for almost 5 mo. Too little time I guess for healing. But your tremendous strength and happiness has given me much faith. Thanks again.
Susan:
You are another wonderful example of the beautiful and giving people survivors become…we want to help others succeed. I am determined to speak to as many people as I can about the dangers of mind altering drugs. I have already stopped a relative,a dear friends daughter and a girl friend from starting benzos for relatively minor medical complaints. Thank you for your kind and caring heart.
Hi Karen; thanks so much for you kind and supportive words. Me too. I will forever be involved in helping to change these horrible outcomes for others. Its the only way I can “make meaning” for the life I lost to the lies of psychiatry and the drugs. Together we are the change 🙂
Dear Dr. Jenn, I think your comments are really interesting. I don’t believe that people “recover” in that it is not possible to go back to life as it was pre-benzos, but it is my understanding that people can heal enough so that we can live with our new reality. As for me? I’d just like the rocking to stop so that I can drive again! At 3 months benzo-free, I wonder if I’ll ever drive again. Do you drive? Did you ever lose that ability? And when did you get it back? I know we are all different, but an encouraging word here would be wonderful.
xoRASJ
Hi Karen: Indeed, it can be a very long, difficult journey. But, it is SO worth it. I was just on the phone with someone who is suffering greatly with several symptoms (at 6 months off). She asked me if I was grateful that I went through the experience of benzo w/d. Honestly, I am grateful (which is not to say I would like a repeat performance). I am so much mentally and emotionally healthier than I have been in my entire 60 years. It is exactly what they talk about in the rooms of AA during “gratitude” meetings when they say that it was worth it – all the agony of addiction, hangovers, post-acute withdrawal, and havoc on lives. With benzos it’s even greater. 5 months is awesome healing time. There is great stuff ahead.
I too stumbled upon this site by accident. I have been 11 months benzo free from a c/t. I was doing really well up to about 2 weeks ago. I’m having really bad anxiety, racing thoughts, tingling and burning all which I thought were gone forever. It leaves me wondering if this is withdrawal or possibly bi polar?!?! I feel so alone and sick.
Shannon
none of us can dx you of course, but I can say that at 11 months off I still had terrible burning, racing thoughts, really bad anxiety and lots more. It is all fading as my receptors heal. It takes time for some of us, a lot of time, but we do heal. There is a possibility that you were in a window, and now facing a wave of sx again. That certainly happens to many of us. If you go to Bliss’s site, recover-road.org and read the success stories you will see that some people have waves until 40 something months off before they heal.
I hope you feel better soon.
Thanks