I was 38 months out on the 23rd. Here is what I am still experiencing since my cold turkey.
I wake up (mornings are still the hardest) and feel sorta decent in my body/mind for about 30 seconds. Then the symptoms wash over me.
Almost my entire body tingles. My back, buttocks and legs are by far the worse. It is not pins and needles like when a body part falls asleep, it is a stinging, electrical, painful, hard to describe tingling. I hate it.
I have muscle spasms happening in various areas all at once. My skin burns, mostly on back of arms and back. My back tightens up and I feel as if I am being crushed.
My vision is bad in the mornings. I still see double sometimes, or it is like I have vaseline over my eyes.
The bottom of my feet burn/tingle.
My hip bones/sockets hurt very badly. Often at night, if I am asleep on my side, they ache so much it wakes me up. Bones in my legs and arms hurt too.
It feels as if someone is squeezing my left bicep.
My mouth/jaw hurts. The pain moves around, but it is often on the left side.
I still get that horrible empty/starving feeling in the pit of my stomach.
The back of my head feels painful, and odd. Like my brain is swollen or moving around. Hard to describe.
My spine still hurts or burns (slightly) some mornings.
My thoughts are pretty bad all day, but the mornings are the worst. It’s all death, doom and gloom. I do my best to distract but I have very little control over my thoughts at this time. I do my best to tell myself they are just thoughts, they can’t hurt me, and they are not indicative of reality, but it is of little comfort.
I am not too anxious when I remain in bed. The anxiety kicks in when I get up and get going. I a still very weak when I stand in the shower. My heart rate goes up and my legs get shaky. I feel I could pass out some mornings.
Stress of any kind is hard to cope with. I went to dinner with a friend and she asked the waiter a million questions, keeping him at our table a long time. I got very anxious about it. Not mentally anxious, but rather in my body. Everything tenses up and the burning kicks in, the tingles, my head feels full of pressure, I feel dizzy. I have NEVER in my life had anything like this before this recovery syndrome started.
I still have head pressure and dizziness. Some days I feel I may be having a stroke, it is so intense. I do my best to remind myself it is just my brain and body recovering from benzo withdrawal, but some days it is hard not to believe I am slowly dying from some crazy illness.
I still have burning tongue. My hands still cramp up horribly.
I am still anxious (not my pre-existing) and depressed. The depression has been pitch black some days. It has gotten better.
My sleep is still not refreshing. I wake feeling groggy and a few hours later the exhaustion feels overwhelming.
My leg muscles still hurt. I still twitch.
My ears ring 24/7. I don’t think they will ever recovery. I do my best to ignore it.
I still have night sweats sometimes.
I get intrusive memories and thoughts. I still obsess.
I still get a feeling of a tight band around my head at times.
I am sure there are other things, but this is a good overview of how I feel.
When I started this journey I thought withdrawal was like having the flu: you get sick, rest, recover, go on with your life. I had zero idea that this was a “syndrome” and it could take many, many years to recover.
I have a crashed immune system. I believe the stress of withdrawal caused it. I am doing my best to repair it with good nutrition. I don’t know how to tease out what it causes and what down regulated GABA causes (or what ever else is going on due to the drug damage.)
Some mornings I wake up and feel I can’t go on another day. I dread my life. Other mornings I can talk myself into coping, somehow. Some days I still pray for death, and other days I pray for healing or for the strength to cope. I talk to God often during the day.
Some days I am 100% sure I will heal and go on to have a good life. Other days I am 100% sure this is my new normal and I will never be able to do much more than garden and curl up on my couch and write. Go to dinner close by once in a while. Or visit my kids once in awhile. I fear I will be sick the rest of my time here on the planet.
The worst symptom of all is the fear. It permeates everything. I do my best to give it over to God.
The evenings are better. The stress of the day is behind me. It is quiet. There is not much I have to do. I can watch a movie or write. I don’t have to talk to anyone. I stay up till midnight often, enjoying the quiet. Some nights my body symptoms are pretty bad, other nights they are minimal. On the nights they are minimal, I stay up late enjoying it. I go to bed knowing I will wake up and it will start all over again.
I am doing my best to accept that I have a major health issue that keeps me from doing and being all I want to do and be. I pray the serenity prayer often.
I have talked to those who have healed: Bliss, Don, Geraldine. Don healed the quickest. Geraldine said it took 11 years for her to feel recovered. She said she started getting better at 5 years off. I’ve been hearing five years from others too. A friend in AA jumped from 120 mgs of valium. She said the anxiety did not get better for 5 years. It finally went away. It’s hard to hear that I could have more years of this ahead of me. But that is a possibility.
When this wave of symptoms started, I felt utterly broken. I had thought I was almost healed. To be thrown back into the snake pit was more than I thought I could bear. But here I am. Coping.
I’ve been awake for an hour and a half. The heavy fatigue is now rolling in and my brain feels heavy in my skull. Thoughts are more difficult to sort through. I get pretty bad cog fog.
I’d give almost anything to be healthy in mind and body. I’d love to wake up and jump into my day, eager to do what needed to be done, to feel joy and happiness, to be at peace with my thoughts and feelings. I listen to my neighbors drive off to work and I am so envious. They are thinking of the day ahead. They are not obsessing about death, about illness. They are not burning and tingling. Their brains don’t feel damaged in their skulls.
Will I ever be healed? WIll I ever enjoy being alive again? Time will tell. I hope so. I pray so. I pray that we all heal and go on to enjoy our lives.
Oh man I am not even over my taker yet and half of this is me already. The back ache, thoughts of dying, heart racing, legs sudden jello and throbbing head are the worst for me.
Trying to take it easy while going through divorce but I took on too much with my gardens.
How do I motivate myself to continue my taper after Move?! Holding for now while I get stuff ready to move and papers signed!
I pray for you all…. this is so hard to comprehend for for people like me who only suffer from some of those symptoms, I do not know how you hang on.. but please continue TO HANG ON!! You are strong…no doubt about that…. I look forward to hearing about your HEALING.. because it is coming!! Take care…
Jenn, how long had you been feeling well when this all came back? I am praying for you!
It had never all gone away but was less intense. I felt pretty good last April and May. June I had a panic attack and odd fears. Then got hit with extreme anxiety and all the other acute Wd sx. I felt like I had been shoved back into the first year off. It’s a tiny bit better but it’s slow. I’m
Hopeful I will recover. In rare windows I feel
Good. But they are fleeting. And few and far between.
Jennifer, you’re going to get well. We just tend to jump back into life too fast when we start to feel better. I don’t know when the heck we’re suppose to know when we’re done with this mess and can get on with our lives. I’m coming out of a 2 1/2 month wave, and all I did was visit some friends for the weekend. Didn’t do much of anything but talk. I guess I talked too much. That has revved up my symptoms before. Our body’s are so resilient though. We will all heal. I know, though, when I go into a bad wave, it’s going to be at least two to three months before I feel better. It’s just a pattern with me. I pray for you and all the other benzo buddies every day. We’ll all get there in our own perfect time. Love you all.
Thank you. I pray for us all too. I’m on the couch in so much pain right now that I don’t care much about anything. My hips and legs hurt so bad! Head pressure. Weak. Dizzy. It’s one of those days :(.
O No Jennifer!! I feel alot like u do..the symptoms make it so hard : ( The coping skills u do r good..I find it hard as well and want to feel whole as can be..im sorry ; ( Friggn stinks! I talk to God myself..my body feelings..anxiety, sleeplessness, and body aches..c neighbors and people go about life.. if I can keep tryn or..but somehow God knows..I think in a way today that I need more self care and gentleness towards self than ever. Hard to sit still..practice..were hard on ourselves when in such vulnerable states..self talk..and rest..I take alot of breaks..it helps that u and all share..Prayers and more 4 u Jennifer.
Somehow wouldn’t take..lets c..
HUGS!! Wouldnt take on here a certain way I wrote it..hmm.. : )
Hey Jen,
Keep fighting! My cold turkey failed.. But I’m OK with it now. I have dropped 10mg this year and that is amazing! I feel more of my old self creeping back in as I experience the panic attacks and fears that I did for so many years before all the meds..but it is OK. I fight blurred vision, brain fog etc. even though I am still on it..but I’ve come a long way..155mg to 20mg! I am so proud of what I have acheived. I am proud to be able to feel uncomfortable (as weird as it sounds), to feel that intense anxiety when I am near an elevator or an enclosed stairwell of even alone. I have panic disorder with agoraphobia and I have had it for years…and not dealing with it and doing benzos really kicked my ass! Now I am getting there, seeing a good therapist and doing graduated exposure..it is working..its slow but it is working. I still have some muscle pain especially when I cut my dose and it takes a few months for my body and brain to cooperate again. I made my last large cut in June and hopefully in the next couple of months I will be able to do it again..not as big this time! What I have seen in myself as I have distanced myself from the “benzo related illness” is a lot of my old avoidance behaviors.. Things that I didn’t really peg as avoidance behaviors..stuff that I have been doing since I was a kid! I see myself, that person who struggles with panic disorder and agoraphobia..she is the same person (although changed by experience) that she was before the benzo journey started.. She is a fighter and so are you. Be proud for how far you have come, I may have not succeeded at my cold turkey but I am making progress towards the end! I know you will recover as will I. We will just be smarter, wiser people when we are through it all.
Oh my. You tugged at my heart. You are a true hero and a warrior. How brave to ditch the chemical calm (when it worked) to face your demons. I appluad you. Keep
Fighting. You will get off and you will function. Your old fears my be heightened now because of the taper. You may find facing them is easier once your receptors heal.
Be proud of who you are. Fears , phobias, panic too boot. You and every other human being is precious. God didn’t make junk.
Thank you for taking the time to write and post. You warmed my heart. Next time I’m
Ruminating on my big fears I’ll think of you embracing and facing yours. Everyone in Benzo withdrawal deserves a metal in bravery and fortitude.
Get yourself to a gym. 3 days per week. Lift weights. Start out about a half hour a day three times per week never back to back days.. Max out at an hour per session. It helps a great deal with the depression part and making the body overall stronger. I used to wake up feeling like death warmed over and I thought there was no way I could hit a gym. But the opposite is true. It gives a HUGE lift. Plus you forget yourself for a while..Also rest as much as possible. Yes you will recover but it still will go up and down a bit till full recovery. I eat tons of protein- steak and eggs, chicken and eggs, beef and eggs, etc. Bacon. some veggies, too.. Eat a simple repetitive simple diet most days with one cheat day each week where I have a decent amount of carbs but not like bonkers. And stay away from most benzo stories. Pick just a few people you want to talk to or relate to.with it.
You will recover totally as 85%-90% of recovery is TIME. But the other 10-15% is what YOU do to make it happen. Yes, I had it all.. Believe me.. I am off 5 years now and about 90-95% most days. Get some fatigue waves that are much less than before and some head tingles. About it now. Simply get out into life as best as you can for now. Make your body strong.. It HELPS in all areas… You WILL get to where you have to be. Count on it.. When the S hits the fan and you feel you can’t cope or are wiped out just go lay down..And Finally, GOD heals those who ask and believe.. You WILL heal totally.. keep going.. IT is worth it..
My heart is with you too! This is one hell of a journey and we are the enlightened ones that have kicked it and will survive it! I applaude you for sticking with your cold turkey, damn it was hard! But in the end, I made the right decision for me..slow and steady and we will all get there! I am so thankful for fear.. As frightening as it is in those moments, I am thankful I can feel again!
Thanks. Good advice. I can’t work out too much. I’m too dizzy and weak and my muscles burn. After I’m a mess. So I walk. Garden. Hoping to be able to do more soon.
Thanks for an inspiring comment. God love you. All of us.
I am so sorry Jen that you are going through this … and yes you are Strong. Does your dog give you any comfort? I imagine so. Moments with my cat on my lap or when she plays – lift my spirits ..and having to care for her each day gives me some structure.
Since I stopped the Klonopin with a taper and then a horrendous experience on gabapentin :(, my brain is healing slowly. Anxiety is the very worst symptom for me. I’ve been very ill for four months with a respiratory disease. Hospitalized for 3 weeks and in a slow recovery. The stress and anxiety has taken over with a vengance. I go through periods of rage often during the day. Panic attacks too. My neighbors hear me and I feel so ashamed afterwards. 🙁
You have been an inspiration to me to keep plodding along. And everyone here also. You remind me that I will recover !
Keeping you, and all of us in my prayers. AA has helped me to “Keep on Keeping On” – One Day at a Time ….and to Keep it Simple.
Hi Jenn,
I’m in the same boat as you, I was on a laundry list of psychotropic medications for about 8 years. It started with Paxil and then, due to tolerance, many others including benzos. I share a lot of symptoms with you, especially the physical ones. I was wondering : have you seen a neurologist? If so, could he detect anything abnormal in your body?
I’m a few years out and although feeling way better at times still get slammed by insane physical pain when I overdo things, and those waves can last months on end!
Hope our bodies will eventually sort this mess out.
All Best,…I know what you feel….
I haven’t but many have. They find nothing wrong. The things that seem to help are diets for autoimmune disorders or for candida. Functional medicine doctors seem to help as well. And of course time. But we are all weary of hearing that. I hear from people five years out who are still struggling. It’s scary.
I, like you, want to be able to enjoy my life before it’s over. I’m not enjoying much. Haven’t for years. This is a hard journey.
Hang in there. I was CT’d Ativan and acute withdrawal lasted 6-12 months. Then I had to withdraw from Pristiq which my doc put me on to deal with symptoms of benzo wthdrawal. I relate to those moments where you wonder when you will turn the next corner. 2 years of hell but it lifts. It’s gone and as you look back you will barely remember it. The brain does an excellent job of forgetting the trauma. Focus on the things that get you through. Be gentle with yourself. There is no magic recipe to healing but I found high fats and no glutamate foods (nothing manufactured eg MSG) was a huge help. Though Glutamates are in everything and the body creates it, too. These wreck us. Lots of sleep if you can.
Wishing you the best and with many windows.