Thirty Months Off
Thirty months since my world flipped upside down.
What happened?
As you’ll recall, back in August 2013, I began to experience extreme withdrawal symptoms after a 1-year controlled taper, despite the fact that my wean was (mostly) supervised by a medical professional. At that time, I suffered from thousands of side effects, too numerous to list here. Unable feed myself, I couldn’t watch television, speak on the telephone, get on the computer, read a book or listen to the radio. I lived in solitary confinement, too sick to leave the house. I suffered irrational fears and believed people were trying to kill me. And I endured a depression so crushing that I considered killing myself multiple times. (You can read more about this horror, HERE.)
The few people who came to visit me can attest to the fact that I was truly a wreck. Unable to eat, I lost 30 pounds. I shook and rocked and paced and cried all day long. And it never got better. Not for one moment.
Until the symptoms slowly started to disappear.
What now?
I’ve made major life changes so that I can focus on healing. Eliminating toxic people from my life has helped a lot. I get a weekly massage, which helps me heal in ways that I can’t even begin to describe. My body had been deprived of physical touch for so long, and my massage therapist’s hands always know just where to go and just what to do.
I’m working again, back at the local community college, in a part time capacity. I’m taking on more free-lance editing work. I’m selling my paintings. I’m exercising and meditating regularly, making sure to take time out to relax when I feel that I’ve been doing too much. I’m getting out socially and enjoying people again.
Amazingly, I no longer suffer from debilitating muscle spasms or brain zaps. In fact, most of my physical symptoms have disappeared. Symptoms that continue to linger include a constant burning sensation in my mouth where I feel like my mouth and tongue are on fire. Sometimes, this is coupled with the sensation that my teeth are loose in my mouth. I still struggle with insomnia. Benzodiazepines damage dopamine receptors, so I still have a lot of healing to do there, but I get about 6 hours of sleep each night, so I’m not complaining. After 2 years of psychosis as a result of chronic sleep deprivation, I’ll take 6 hours a night. I still get fatigued rather easily. I still have trouble with cognition; my long-term memory is much better than my short term memory, but even that is improving.
These days, I don’t take any prescription medication.
None.
Oh, and I dumped my psychiatrist.
(I don’t believe in the efficacy of psychiatric drugs anymore, so why would I keep her on the payroll?)
And guess what?
I’m feeling fine, better than I have in years.
I’m aware more than ever that we live in a country where making money is more important than anything else. Drug companies spend a fortune on “direct-to-consumer advertisements” which are shown on television, and studies show that when patients come in asking for a particular medication, they are more apt to leave with a script than not.
Physicians are susceptible to corporate influence because they are overworked, overwhelmed with information and paperwork, and feel unappreciated. Cheerful and charming drug reps, bearing food and gifts, provide respite and sympathy and seem to want to ease doctor’s burdens. But every courtesy, every gift, every piece of information is carefully crafted, not to assist doctors of patients, but to increase market share for targeted drugs.
And while I want to believe that most doctors want to help their patients, many are not educated about the real dangers of the psychiatric medications they are prescribing their patients and, as a result, they are harming people.
I’m profoundly aware of the connection between trauma and addiction.
Our culture demands that we hide our pain, that we move through our difficult times quickly, but dealing with trauma cannot be rushed. If someone is grieving the end of a relationship -a death or divorce – or going through a period of with intense stress, it takes time to be able to transition through these times of intense change.
Sadly, our culture shames us if we slow down to take care of ourselves. We learn early on that we are supposed to be productive all the time. We stop listening to what our bodies are telling us (rest, slow down, cry, ask for help) and if we cannot “pick ourselves up by our bootstraps” there must be something wrong with us. We are given diagnoses and told to listen to “experts” who will provide us with medication to “help us.”
I now believe I had to go through this horror is because I’m supposed to use my skills to spread awareness regarding the dangers of all psychiatric medications, particularly benzodiazepines.
Over the last 2.5 years, I’ve connected with dozens of individuals who have shared their withdrawal stories with me. It’s a shame that there is so much stigma and secrecy surrounding mental health issues because, I’ll tell you, there are a lot of people out there who continue to suffer daily from the horrors of protracted benzodiazepine withdrawal as a result of doctors who were either uninformed about the risks of the medications that they are prescribing or prescribing these medications unethically.
They need to know they are not alone.
And they need to know that they will get better.
They will heal.
I’m almost there.
{Special thanks to Jenn Harran, the most awesome massage therapist in the land. And to my therapist, Dr. Bruce Gilberg, for helping me wade through my mess.}
amen and hallelujah…thank you sister. I love you.
Thanks Monica! You know how helpful you have been to me. Your reassuring words have helped me along the way. I’m not 100%, but I’m damn close! I have my life back, and I’m damn grateful! People need to know they will heal.
This Renee is a fantastic report/post! I’m doing a loud big Snoopy happy-dance for you! ROCK IT, SMASH IT, and you GO WITH YOUR BADASS HEALTHY SELF!!! 😉 <3
Hi D: Can you even believe it? This thing has been one helluva haul. Now I get angry and get active. Those drug companies had better watch out!
As you alluded to Super-Woman-Ray-Nay… there are quick, easy, OBVIOUS limits to making so much money, pleasing shareholders & exec’s, and the well-being NATURAL health of people who don’t need so many expensive man-made crap! Eh? LOL 😉
I’m so happy to see how far you’ve come, and that you continue to share for the sake of others.
“These days, I’m aware more than ever that we live in a country where making money is more important than anything else. ”
Some think I’m weird for researching everything the doctor prescribes to death, but that right there is one of the big reasons why.
Sending so much love your way.
Amber, you are BRILLIANT for researching everything. The problem is many people go to their doctors when they are in the most vulnerable, most desperate place; they’ve tried everything already and they need help. Sadly, the kind of help people are receiving is based on a flawed premise! Thank you for sticking with me during my darkest days.
Remember how I wasn’t able to meet you back in Florida several years ago? It’s because I was in withdrawal, and I was too terrified to drive. I’d love the opportunity to finally meet you – and the boyz – this year!
I’ve wondered how your recovery was gong — thanks for the update. And I’m glad you’re mostly recovered now!! It is criminal, or at least negligent, how you were left on Klonopin for so long and not given the proper guidance to ramp off it.
Thanks Jim. It is criminal, and that’s why my next phase is going to involve activism. I can’t allow anyone else to have to go through this horror. I was fortunate to have found amazing support, but not everyone is so lucky!
You’re incredible: right, we’re told to hide our pain and even the support we need to manage it. Your posts, since you began writing about the horrors of your withdrawal, have been profoundly honest, allowing us to learn, firsthand, what it means to learn how to find your way back to becoming whole again. Sending love!
Monica! Thank you for checking in with me. Is it too late to get involved with the LTYM Show? I have ben working on a piece that is starting to come. It’s funny and light-hearted and has nothing to do with this benzo crap. I’ll email you my phone number. Let’s talk.
What a brave and poignant post, Renee. I’m so thrilled to hear how improved your life is–so extremely well deserved!
I can relate to being medicated when drugs were not needed, and suffering some less severe, but still troubling, complications. You’re so right the cultural epidemic of over-prescribing and a lack of education on the potential ill effects. While I’ve known people, including a dear friend who struggles with bipolar, who really do benefit hugely from the right medications, I know far more folks are needlessly on drugs that hold them back in many ways.
I also LOVED what you said about slowing down. We all need that.
Thanks for your voice! You may just save some lives. Perhaps you already have. ❤️
We all need to be informed with accurate information to order to make own medical decisions. And I would argue that a lot of people who have been told that they are bipolar are not…but that’s a whole other topic to tackle.
You’re doing such great work regarding women’s sexuality. I’m really proud of you. Yours is one of the few blogs that I continued to read during withdrawal, even if some of the topics were difficult for me to handle. Proud of us, sistah!
*fist bump* Means a great deal. Proud of us, too! And I agree on being informed, etc. So, so important.
Excellent perspective, attitude and writing! But…they pale in comparison to the excellent job you have done getting through this whole thing. I am so very proud of you. (Thank you for the snail mail note. I am using it as one of my bookmarks for a book I am reading – “Neuroscience for Dummies.”)
I’m so proud of you. You’ve made your recovery a mission to help others.
As for docs and pharma, preach it, sister! Just once I want to hear a doctor say “Let’s take you off of some of these meds.”
Right? Now you’re talking my language. We’re all born perfect; as a result of life traumas, we begin to struggle and suffer – and believe that we are broken. But we aren’t! We can reprogram ourselves! It’s amazing!
Thanks for sharing your story. I’m so glad you are better. 🙂
Doing better, yes. I still have to be careful not to take on too much, but I’m not suffering from all those crazy side effects. I literally cannot believe I am making it thru.
Seeing you come this far is heartening.
I wish I could gather you in my arms for a thirty-month hug.
Julie, I would gladly take that extended hug from you. And thank you LITERALLY for supporting me by buying my paintings. You inspired me to keep going with my art- and look at me now! 🙂 Who knew? Apparently, you did. Thank you for your boundless support. My cyber friends are amazing!
Your words were right on – and just what I needed to hear today. Mental illness – well, it sucks. It just does. And not having understanding from the world all around makes things so very hard. Hugs to you.
Actually, mental illness doesn’t have to suck. In some ways it’s a gift. I see now that my entire life I’ve had certain… “abilities” which people didn’t believe I had. I was teased and ridiculed and called crazy for having these abilities. The thing is, I now believe everyone has a “super power” – and mental illness occurs when we try to ignore our true nature to fit in. Now I understand the reasons I started to suffer from insomnia and it all makes sense! I was trying to override a powerful truth about myself – and the “anxiety” manifested itself as insomnia. If I had just listened to what my body was trying to tell me, I wouldn’t have wound up on medication. Of course, the “truths” that it revealed were difficult ones to face – but my eyes are open now, and I’m feeling very awake to what I need to do in the world.
Wow. That sounds weird.
Kinda hard to explain, but I’m working on it. I plan to write about this, but not yet. It’s too personal to me right now. I need to get comfortable this piece of myself before I share.
Congratulations on your on going success. I bet many people love your blogs. I only wish much happiness and you grow with appreciation, understanding and help those who are in need. Knowing who you really are makes the world sweet.
Thanks Mom. I’m learning who I am and figuring who I need to best support that person.
love you!!!
Thirty months ago – I guess that’s when it was – I felt like someone had kidnaped one of my best friends. I knew you were alive, but not doing well. I wanted so badly to hug you and hold you and make it all go away, but that only seems to work for the cuts and scrapes of toddlers. I don’t think you can hug klonopin addiction withdrawal away.
As I’ve watched you struggle through withdrawal and divorce and getting your life back, I only gained more respect for you. I liked you a lot before any of this came up, and I like you a lot more today.
I’m so glad you got rid of the quack who got you hooked on this horrible drug. She either is not competent to be doing her job or else she doesn’t care about her patients. In either case, she should probably be drummed out of the medical profession.
A lot of people will jump all over me for this, but I’ve always thought the field of psychiatry was about half witchcraft anyway. I don’t think the doctors who practice it know nearly as much about it as they think. You are a living example of the dangers.
Well, I’d better stop before I fall off my soapbox. Just know that I love you and that I care and that I pray for you every day of my life.
David.
David, David.
I’ve read and retread your words at least 20 times yesterday. The way you use words, the intimacy you create, is overwhelming. I’ve always valued your friendship and appreciated your talents as a writer, and during this awful time in my life, I came to know your open, generous heart.
Thank you for staying with me during this difficult time: for emails and messages of encouragement.
I believe that psychiatry is particularly dangerous because the doctors are quite arrogant, believing they are “trained experts” who know everything about brain chemistry when in fact, they don’t. They would do better by their patients if they were more transparent and acknowledged their ignorance.
Please don’t ever get off your soapbox! The problem is that not enough people are willing to get involved!
Your reply humbles me. I truly want to make a difference in other people’s lives – and in yours in particular. Thank you so much for the encouragement.
I finally, FINALLY took a peek at my WordPress feed on blogs I follow, and was thrilled to see your post, Reneé. Thirty months? You’ve been a fighter even when you didn’t realize it (IMHO, that is).
Fight the good fight! Against the pharmaceutical companies. Against uninformed/unethical psychiatrists. Against your lingering systems.
So. Very. Impressed.
Hi Gloria! Thank you for the comment. I’m so appreciative. Really! I just turned my WordPress feed back on the other day, and it was overwhelming to see how many blogs I had been pushing myself to read and comment on. I’m glad you’re here, but take care of yourself and do what you want to do during this short life. 🙂
Great, courageous and honest post. One step, after the first. Great news and I look forward to more. Have a wonderful week. Stay positive.
Thank you, Clay. Can you even believe how much I’ve changed? I’ve gone from “grammar girl” to well…something else altogether. Thanks for the comment.
Yes you have – some of was forced on you. The first post I read of yours was about how ‘Monkey’ had read The Giver and was somewhat philosophical about it. I hope he is doing well through all of this change, too. My daughter O is reading The Giver now, we haven’t talked about it – but we will. A powerful book. Hope you are watching Downton Abbey – it’s a good series full of plots and twists. Life is like that, we don’t know what is around the corner. But we must embrace. Have a wonderful week.
You too, dear friend. Enjoy those upcoming discussions with your daughter. And I guess I need to start watching Downton Abbey. I know people love it! I missed the whole thing due to withdrawal. I have 2.5 years of movies to catch up on.
So good to know you are doing better. Thanks for sharing that. Congrats on the steps you have taken. Encouragement for everyone. And weaning yourself off meds, so helpful. Back in early 1960s my grandmother was on 22 medicines. She was a walking zombie at age 53.
Twenty-two medications?! That is a horror! It’s just…overwhelmingly appalling the way that people have been used as Guinea pigs. Thank you for your support.
Renee, I don’t know if there’s much more to say. You are adored by so many. And rightly so. I’m so relieved and happy for you. You’ve fought the fine fight and came through victorious. Seriously, what a nightmare you’ve lived. So glad you’re on the other side. You are strong girl! I am so proud of you! I’m sending you lots of love and hugs. I missed you. ????
I, too, am among those who are happy to see you smiling. I’m always glad to see a new post of yours pop up, even if it’s a difficult one. I look at your paintings every day and they always make me smile. Thanks for surviving and thanks for continuing on with your therapeutic (for everyone!) art.
So glad to hear you’ve come through this nightmare, Renee. Here’s to life continuing to get better all the time!
I think of you whenever I see my canvas you painted on my desk. 🙂 I’m so glad you’re finally starting to truly feel refreshed and healed. Keep practicing self-care. You’re so right about touch being healing. I just watched a presentation about the power of touch and how at a certain age we’re groomed to think that touch is only associated with sex/sexuality, so we no longer touch one another. But there are many kinds of touch and ones that can be friendship or healing (think hugs, holding hands). I thought the presenter was totally on to something. We do deny ourselves a lot of kindness this way.
It will continue to get better, I promise you!
I’m happy to hear you are doing well. Thank you for sharing your story and your path of healing.
Thank you for sharing your story. It has helped me immensely. I am 19 months off myself. My mouth burns constantly as well. Here’s to our continued healing!
The burning mouth is really awful! I’ve read that our pain/pleasure center is next to the part of the brain that registers hunger and thirst. I don’t know about you, but early on I couldn’t eat or drink and I was terrified all the time. Now things are a bit better, but u still get waves.
I plan to write about the burning mouth syndrome in an upcoming post. In a weird way, it’s reassuring to know someone else is experiencing the same symptoms.
Do you have eye pain? Chattering teeth?
I was so moved to read that you have burning mouth too that I broke down and sobbed. So yes, I’m also oddly relieved to hear that someone else is experiencing this too. While it sucks tremendously that we have this symptom, it is really comforting to know we are not alone.
Early on, I couldn’t hold food down. I gagged a lot and it was worst in the morning. It was such a strange thing. It didn’t feel like typical nausea where the root of it was from queasiness in my stomach. But rather like a knee-jerk reaction. It must have been nerve driven. I lived on Ensure shakes during that time to get some nourishment in me. I lost a lot of weight as well. You’ve heard the expression – there is no such thing as too rich or too thin? Well, I experienced too thin. I have yet to experience too rich, however. I’ll let you know if that happens! ;). I did not have eye pain or chattering teeth, but my jaw gets stiff. I did have an intense vibrating sensation in my body and awful head pressure. Sometimes it was hard to sit still due to anxiousness. I’m very relieved that all that is behind me now. I am thrilled to hear of your wonderful progress!! I’m also looking forward to your post about burning mouth! Thank you again for sharing this part of your life. I has made a difference for me!
CT: Yes! I get a stiff jaw, too — and I feel like my jaw doesn’t really know how to “rest” anymore. As you say, it’s an odd physical experience. I had all those strange vibrations, too – and for the most part, they seem to have disappeared. I get frustrated because I still experience waves – but at least I’m eating again, as you said. Nice to meet you. I wish we all could live near each other to recover together and work to raise awareness on this issue. I wonder if I’ll ever be “normal” again. I guess this is my new normal.
Nice to meet you, too! I look forward to more posts and sharing milestones!
Hi Renee! I have a milestone to share with you! I was recently fitted with a mouth guard for my Burning Mouth and I find it helpful! It feels to me like it gives the over active nerves something else to feel/do so the pain signals are interrupted. I can feel that the nerves are still trying to send the signals, but the guard won’t allow them to complete their mission. I’m working with a dentist at the local university. The clinic specializes in TMJ and facial pain. They are very knowledgable about BMS and I feel like we have a good plan in place. The crazy thing is that they first suggested a mouth rinse of Clonazepam to relieve the pain. I politely said, “not no, but hell no!” to that plan! I told them a bit of withdrawal story and they were receptive and understood my reluctance to treat with medication. They provided a detailed explanation of causes of BMS and offered some treatment options. The mouth guard is thought to help the nerves down regulate and retrain pain sensitivity. I’m just happy that it provides some relief! I have also changed toothpaste and carry Biotene gel with me. I apply it to the roof of my mouth as I like. I have started taking Co Q 10 and Alpha lipoic acid at the dentist recommendation as well. From the conversations I’ve had with the dentist, I have hope that one day this will all be in the past. I hope that you are also experiencing changes in the quality of the pain. That’s how it has been happening for me. The pain is still present, but the intensity and qualities of the sensation change with time. Here’s to patience and continued healing!
CT! We are on the same path! I have a mouth guard and I just had my dentist do some fine tuning with regard to the fillings in my mouth. I had all the metal replaced, and I think that when they put in the resin, it was never filed quite right. My current dentist did a lot of checking and discovered that I was putting waaaaay too much pressure on my right side of my bite, and she’s slowly been making adjustments. Like you, the nerve pain isn’t gone 100%, but it is amazingly improved. I think extended use of benzos changes the bite plate or something. Why not? That stupid drug impacts every other part of the body? Why not the jaw, too? Glad you’re getting some relief. Here’s to taking control of our own health and to never giving up, right?
Thank you so much for this. I just wrote about my very ugly history with psychiatry. It truly is a shame. I am currently about 17 months completely off Klonopin.
I’m so sorry to learn that you, too, are a casualty to psychiatry. If we speak out and tell our stories, I know that people will eventually understand that these drugs that are intended to heal us are actually harming us. Once one recognizes that prescription drugs are just as dangerous as alcohol or illegal drugs (probably more so), it’s difficult to trust conventional medicine/doctors again. I’m working on it. How are you doing now at 17 months off? I had my first window at 16 months.
Hey there, Renee. I agree. There are so many lies in the field of psychiatry and many more in most other areas of medicine (medi-sin). The pharmceutical industry has infiltrated all the teaching institutions and has people brainwashed and brain dead. Besides making money, I think that these drugs serve as a way to control people, to keep them asleep to the crooks and their goings on in this world.
At 17 months completely off (did a 275-day taper before that), I am still with a ton of withdrawal symptoms, especially physical pain and soreness. With that said, things have steadily gotten better. My overall pain level is less and seems to decrease about every 2-3 months. (Interesting to see this trend for a process so unpredictable.) My senses aren’t as heightened as they once were. I am not as hot and I don’t sweat as much, either. Numbness in my mouth is now a rare occurrance, whereas as for a long time, it was a daily struggle. Things are bad, but they have defintiely improved, too.
I requested to read your blog post. I’m truly interested in your story. Let me know when you decide to let people read.
Sounds good. We just launched it and have a few things to edit/update/add.
Hi. The blog entry is now live, so if you want to read it, it’s there. Thank you for your interest.