I will be 27 months free tomorrow. It’s been quite an adventure healing from the damage my prescribed dose of clonazapam did to my brain and body.
I am having more hours of normal, for which I am exceptionally grateful. I can now think more clearly, and my emotions are returning to normal size. My body is still fighting to heal, and I do wonder if I will ever be rid of all the symptoms, or if I have slid over into the CFS or Fibromyalgia zone. I hope it is still “just” benzo withdrawal syndrome, and that one day, all the remaining symptoms will vanish.
What I still have: burning or painful spine, bone pain, joint pain, muscle pain, tingling, electrical zaps, whole body jerks, blurry vision, muffled hearing, ringing ears, head pain, head pressure, bee sting feelings all over body, painful bottom of feet, tight band around head, dizzy, weak, woozy, extreme fatigue, broken sleep and insomnia. I still have times of high anxiety for no reason, feeling suffocated, chest pain, bicep pain, jaw and teeth pain, burning tongue, and painful red eyes. Sometimes I get itchy in places, (last night it was my right forearm) and sometimes I get blisters on my skin for no reason. I still have muscle twitching too. Now that I write all this out, I can see I have healed some things, but I have a long ways to go.
Many of you write to tell me that you are tired of defending your illness to family, friends, doctors, etc. I know. I am too. When I have good hours, (and I have more and more of them) I don’t look or act the slightest bit impaired. When I feel like crap, I STILL don’t look impaired. You would only know I don’t feel well because I would bow out of doing something I wasn’t up to. People who have not lived through benzo withdrawal syndrome have NO idea how hard it is to battle to be normal, and how tiring it is that this illness keeps going and going and going and going and going and going and going and going…..
I am able to do more. I am doing my best to get my non-profit created. I am convinced that the universe will conspire to send me the right people in my life who will help get my therapeutic garden off the ground for the whole community. I am also blogging about the social neuroscience of innovation and putting my hat into the consulting ring. So, even though I am still suffering symptoms, I am not sitting at home in a dark room wasting away. I do have a life, even if it is a very small slice of what I was able to do before I began this healing journey.
For those of you just starting to get off of your benzo, I wish you all the best. I hope you are working with a doctor that understands that slow and steady wins the race and that any symptoms you have as you taper and or once off, are NOT automatically “your underlying anxiety, or even a “new” mental illness unmasked. (most likely it is the damage from the benzo per Dr. Ashton’s research and many thousands of us who have discovered that to be true) I hope that once off, you can maneuver through the ups and downs of this syndrome.
I am going to celebrate tomorrow’s freedom from one of the most addictive and damaging drugs on the market… klonopin and its generic clonazapam. I wear a medical ID bracelet that NEVER comes off my wrist, warning medical personnel to never, under ANY circumstances, give me a benzo. Not even if I am flopping around like a fish out of water. No. Benzos. Ever.
I have a ways to go, but little by little, I am getting there. You are too. Keep fighting.
A medical ID bracelet. What a GREAT idea. I keep telling my husband to never let anyone give me a benzo. That would solve the problem. Thanks for all your encouragement! Healing is coming for us all!!
Do you still have waves? At 22 mos. out, I am having some pretty bad waves. Seem worse than ever. Does this seem to happen to you too?
I most definitely still have waves. In one today. Yesterday felt sorta decent, today feel like I backslid a year or so. I am learning to go with the flow.
Hope your waves mellow out soon.
I am in a really bad one today–sorry you are too. It is just SO hard being non-functional. I wish I could learn how to go with the flow. How do you do it?
We just have to keep walking!! Thanks for your blog.
It is so difficult when you have a family with 2 young daughters….
“this illness keeps going and going and going and going and going and going and going and going …”
Yes, it’s the Energizer Bunny of illnesses. :p
I was ten months off yesterday. Did I celebrate? Sadly no as I’m in one hell of a wave with two nights without sleep, GI disturbances and severe, mind numbing anxiety. I don’t know how I will cope if I go on as long as you Jennifer. I’ve already been incapacitated for years with tolerance.
Congratulations to you for 27 months x
In many of the post benzo users we are left with a immune system weakness that makes us over sensitive and react violently to inbalances of any kind in the body. Many of us are left with a candida problem. I had had all your symptoms for 3 years until I looked farther and started following a strict candida diet and used many natural herbs, spices etc. to slowly and gently turn things around. I had been on benzos for 29 years and the last year 60 mg. of oxyzepan. I had constant withdrawal symptoms even though I tapered correctly. I had the burning tongue and everything you describe and now after almost 4 years with not much change i am getting a handle on it using the candida program I set up for myself.
Pat, good for you! Sometimes we patients have to take matters into our own hands. Too bad doctors are so uneducated!
I’ve wondered about Candida as I believe I have this. I’ve always had a very careful diet almost a GAPS diet and also take natural antifungals and eat yogurt. If I’m too strict I get a horrible reaction which sends me into a wave.
I’ve decided to go with the flow sort of thing and not worry too much until I’m over the worst of withdrawal. So many people seem to get Candida in this. It’s hard to tell which comes first the candida or the withdrawal symptoms?
Hi, i’m curious as to how much klonopin was taking and for how long to all of you that are still having withdrawl symptoms after being off of it for so long ? I’m in the process of tapering , tomorrow will be one month that i cut my .5 morning dose in half , i still take .5 at night . I am still experiencing a lot of burning in my bones near my collarbone but it does seem to be getting a little better day by day. I am not sure when I am going to do another wean, my first wean was four months ago and I waited until I actually felt stronger to do another one . At mass this morning I prayed for all of you , praying that The withdrawal symptoms will get better and better soon. Since I am still taking it I am just worried about what I myself have to look forward to and I am preparing myself through meditation and exercise every day to keep my mind and body strong and eating as healthy as I can . Keep fighting the fight everyone it’s only uphill from here, Joann