I realize that Don and I are beyond the place of intense suffering from withdrawal symptoms. We now blog more about the new lives we have: the gratitude and the hope we feel. That leaves some of you who are still struggling with withdrawal symptoms, without a “voice” for where you currently are in your healing.
I’ll revisit my symptoms.
When I was tapering, I became bedridden. I was too weak to stand up for very long. Taking a shower was next to impossible. I don’t have a tub, so I stank most of the time from lack of hygiene and benzo withdrawal sweating. Brushing my teeth hurt my arms too much so I often had a foul mouth. I practically shaved my head so I wouldn’t have to worry about my hair. I was too weak to prepare food. Some days I went without eating. I bought a walker that had a seat, and I used it when I managed to find the strength to go out into public. Prior to that, I used a cane, but that was not enough help as I deteriorated more and more as my dose got smaller and smaller. The weakness and fatigue were overwhelming and frightening.
During my taper and then after my cold turkey, I suffered with these symptoms (in no particular order): burning skin, formication, muscle spasms, muscle twitching, tinnitus, back of head pain, brain fizzing in skull, brain rolling around in skull, head pressure, behind my eye pain, mouth-teeth-jaw pain, burning tongue, burning spine, full body tingles that felt like bee stings, restless legs, aching, burning muscles, constipation, benzo belly, bladder problems, food sensitivities, sounds made me feel terror, anxiety, depersonalization, derealization, obsessive thoughts, mood swings, memories from life events, depression, panic, racing thoughts, racing heart, hot flashes, insomnia, tight chest, heart pain, skipped beats, trouble breathing, ear pain, neck, back and shoulder pain, bicep pain, buttocks felt like they were being pushed in and rotated with cut glass inside of them, body jerks, paranoia, hallucinations both visual and audible which resolved after a month or so after my cold turkey, trouble walking, feeling as if I was being pulled down, flashing lights in my peripheral vision, ocular migraines, feeling as if I was moving up and down when sitting or lying down, organic fear, organic terror, profuse sweating, cysts on knuckles, painful blisters on my thigh, severe joint pain, feeling unable to connect with reality or people, sobbing, dizzy, memory problems, unable to think straight, confused, exercise intolerance, all of my emotions felt too big, smells and sunlight overwhelming, Alice in wonderland syndrome, metallic taste, song in my head, looping thoughts, fear of going insane, …. and more.
I was an utter and complete mess. I prayed for death every day. Now of course, I am so grateful I didn’t die. I still have some physical symptoms, but they are manageable. I know in time, they will fade away. Bliss Johns told me that the tinnitus may never leave, but that is ok. I can live with it. That’s a small price to pay to regain my life.
Most of my troubling psychological symptoms are gone too. What is left is barely felt, and it isn’t a bother. I know it will be gone as well very soon.
If you are still suffering symptoms, please know that the usual outcome for benzo withdrawal syndrome is recovery. Your central nervous system will heal. In time.
I had many, many, days feeling utterly hopeless. I was certain that I was doomed to live in the hell of withdrawal forever. I think the hopelessness was my worst symptom.
I coped by gardening. I created a wonderful flower garden in my front yard that my whole community enjoys. I have veggies planted on the side of the house. I spent full days out in the sun, feeling crazy as a coot, but kept my hands and my mind busy and focused.
I also coped by letting go. I surrendered my life over to God as I understand God. Now mind you, I was pissed off with God a lot, (most of the time!) and let God know it. I’ve called God every curse word in the book. Thankfully, God loves me enough to overlook my anger. God knows the anger was really fear. Deep horrific fear. Fear of living, fear of dying. Fear of everything. When I let go, and let God, I still suffered, but I felt carried. I knew God was doing for me what I could not do for myself. I am deeply grateful. If you can let go of your expectations about your recovery and trust the process and trust God as you believe in God, I assure you, things will be more manageable. You may still suffer, but it will not be as intense.
I’ve come so far in my recovery. Life is wide open with possibilities now. I am so grateful. I wake every morning and ask God what s/he would like me to do for the day. I do my best to follow the guidance I am given.
If you are feeling hopeless, please know that many of us felt the same way and now we have fresh, new lives brimming with hope. We have our health back too. Even with the few remaining symptoms I have, I feel better than I did when I was in severe tolerance withdrawal waves. And I know I am only going to get better.
I know the symptoms can be almost unbearable. Find ways to distract. Find ways to comfort yourself. Accept that you are in benzo withdrawal and you are healing. Don’t look past today. Stay right here, right now. This moment is the only place where you can access God. You can’t access God in the past or in the future because neither exit right now. Be fully present in this moment.
Life is a series of ups and downs. We’ve all been down in withdrawal. Up is the only place to go! And we will all get there. One day at a time.
Dear Jenn,
Thank you for posting your symptoms. I am in my 9th week of ct from about 5years of clonazepam use along with opiates, soma and buspirine. And I do mean cold turkey. I stupidly and ignorantly just stopped everything. I am very much behind you in that we must educate the public about benzos but first we must get the medical professionals to admit their own ignorance. I cannot believe how unwilling they are to even try to entertain a conversation about this. My new GP totally dismissed me when I tried to tell her about my w/d, and said all my symptoms were due to my diabetes. I found out I have a huge blood clot in my left leg, running from my groin to my calf. I am dealing with this on top of the nightmare of w/d. I have to work through this on top of it. My boss has not been understanding when I have had to miss a couple of days. I don’t think anyone understands who has not been in our place. I certainly would not have. Thank goodness I stumbled upon your site. I do hope your new business sores, as you certainly deserve it. I live for all the new posts, not just because misery loves company but because it has kept me from grabbing my boyfriends bottle of klonopin. By the way I am 64 years old, also an alchohlic. I hope age is not a factor in healing. I do find I am getting worse but all the meds I have to take make things worse. Thank you again for all your insight.
Thanks, Jenn, for that wonderful encouragement! You are a blessing to all of us who are suffering this terrible ordeal. We are behind you in everything you can do to get the word out about these drugs. We applaud all your efforts!!!
Sometimes we do get worse and worse in the beginning.. who knows why. It is such an up and down recovery. All you can do is hold on. I am glad you didnt have a seizure from your cold turkey. Whew! At nine weeks off if you did reinstate with your boyfriends benzo, it could be a disaster. Most people who reinstate after two weeks off do not get the relief they hoped for and they find tolerance sets in pretty quickly. Getting off again, even a slow taper, can be unbearable. I know too many people who reinstated months after they were free none of them are pretty stories.
Keep holding on. We are all rooting for you.
Great post you shared. GOD is love, and we all will heal with the right attitude and….Peace and continued healing to you.
Thanks Joseph for your kind words. Yes, God is love. Of that much,I am certain.
Hi Jenn, I would like to know if you suffered terrible low back pain and for how long did it last If so. I have been in unbearable low back pain for almost two months and just don’t understand what it could be… please let me know..
Thanks,
Brian
Brian as always, please see an MD if you are concerned. Kidney infections for one, cause lower back pain. As can constipation. But it may be benzo wd as so many of us had it or have it. I still get it and when its bad I just want to curl up in bed and sometimes still do.A few of people had it very very very badly…
It does go away in time, like everything else in wd.
Hope you get some relief soon.
Thanks. You just have described exactly what I am going thru. At this point I can’t believe I will be well one day. I am so jealous of my husband as he gets up in the morning and enjoys his day while I struggle every single minute. My daughters are being looked after my parents in another country (but they don’t know what is going on) I have to hide everything from them as they are pro drugs. My daughters have to come back soon (as they are missing mummy) and I can’t honestly see me looking after them when even on skype I feel terror.
How to believe in God at this stage???
That’s a good question. I had a hard time believing that a loving God could allow such a horrific illness with so much suffering. So I just had an honest relationship with God and let him know I was angry or doubting. I didn’t sugar coat it either when I prayed. I let him have it with both barrels. For me, honesty was the best way to go. IF you arent feeling it for God, tell God. Don’t pretend with God. Heavens, we have to do so much of that as we recover. I’d be smiling while people talked all the while incredible horrific thoughts ran through my mind. No one ever knew. I was good at pretending I was ok. I did’t do that with God. I didn’t hide. I didn’t pretend.
My suggestion would be for you not to either. When your brain is more cobbled together, your relationship with God will change. Just like your relationship with other people will change. All for the better. Hold on. Keep fighting. I am sorry you are worried about having your children home, but glad that they will be back around their mom.
Hi Jenn, so very happy your healing has finally come.. I think we’ll have residual symptoms hang on for a while. We can deal with that though after dealing with the horrific symptoms we’ve already had to endure. I’m 1 year and 2 weeks off Xanax. Ii’m still struggling, though having an occasional better day. Have terrible head pressure, balance problems horrible stomach issues,benzo bloat,and feeling as if I am being pulled down like you always described. I could go on and on. I truly believe God works everything out for good. I just keep on persevering and thanking God for what he’s doing in my life. I’m looking forward to seeing what he has for me in this next season off life. Thanks for all you’re doing for all us benzo sufferers. Diane
Thank you so much for your reply. I feel grateful that I’m not getting severe physical symptoms but I have mental torture. I’m very fearful, have very high anxiety, cry a lot and think about dying. I just tapered from 2 mg of Ativan to 1.50 in a month. And I’m still on Zoloft. I feel so hopeless but this forum is really helping me. My doctor doesn’t think I’m in withdrawal. She says I shouldn’t get any. I am also turning to God. Thanks for being there . Francine
Thank you for posting this. I took Xanax only a few times (3 or 4 to be exact) and took my last pill about 4-5 days ago. I am having withdrawal symptoms from what I have read on MANY websites. I keep thinking something is wrong with me, but I have to keep reminding myself that it’s just the Xanax!! Today I have pain in the back of my head and neck which started about 2 hours ago. Have had a minor headache all day. I don’t think I can handle taking it anymore. Sucks!
I thank God to have found this site. I’ve been on clonazepam for 5 years prescribed for sleep stage regulation for narcolepsy. I have a long story over the last year but I was pulled off clonazepam cold turkey.
Two days later, I began to have severe muscle spasms. I literally looked possesed of a demon like some movies have portrayed. I was misdiagnosed with 2 different diseases and conversion disorder. I was in a wheelchair for 5 months. I begged to go back on clonazepam so I could sleep. Things got better for a few months.
Then, the restless legs that I believed I had became excruciatingly painful. My nerves were ramping up. Certain sounds provoke jerking muscles and muscle spasms. I have a hyper startle reflex, pain just here and there.
I am a RN and oh so careful to avoid addictive drugs , or so I thought. I had to resign from my job and I spend most days in bed. I spent hundreds of hours doing research and finally realized what has happened to me. I had tried to wean off of
Clonazepam but my symptoms got worse so I returned to my 2 mg dose.
I have lost an amazing career as an international flight nurse. I have lost my
health and I have lost who I am. Just tonight, I had asked God to just let me go into a long seizure and die. This is unfair to my family and this is unfair to me. The narcolepsy is completely uncontrolled, as Adderall and caffeine make matters much worse. I’m in a tangled web of a mess.
After reading the other postings I’m both relieved and terrified. I dread this weaning process as I am already suffering at the current dose. However, it feels good to know there are people out there who understand. I can relate to so much of what has been written. I feel like my journey through this painful experience is about to reach the beginning of the end. I lowered my 2mg dose to 1.5mg. Maybe that is too much but all I have are 2 mg tablets.
I have moved and my new sleep doctor has refused to write a prescription for clonazepam because he doesn’t like it, understandably so. Yet, he knows this will eventually force me into cold turkey withdrawal. I am terrified at what will happen.
I just want me back. Until then I will keep looking at pictures of myself, when I was myself, so I won’t forget who I am. God help me get through this with my mind intact.
I emailed you directly, however I wanted to leave a reply here as well.
You story breaks my heart, as do most stories about benzo withdrawal. We are all here for you. Please keep in touch and let us know how we can best support you on your healing journey. You are not alone. Many have traveled these long, lonely roads. We have to hold each other’s hands and hearts.
Thank you, Jennifer, for your response and encouragement. This is way bigger than me and I am glad to know that I am not alone. This site is also helpful for my family to read and understand what I’m going through too. I feel like they are victims as well. I know God will walk me through this even if I feel blind as a bat. It’s tough not knowing when it will end and what tolls it will take on my life and the life of my husband and kids. Today, is my first day of weaning and I am already feeling the revved up nerves. Good news though…my former sleep medicine doctor wrote for refills so that I will be able to wean down slowly. I’ll be in touch with the people here with updates. Thanks again, Jennifer. Take care.
Can you doctor get it compounded for you so you can reduce slowly?
That isn’t something that I have thought about but I will certainly ask. I’ve read in some places the Ashton Protocol may be too fast for some people but I will purchase the book and bring it with me to my appointment.
Ashton is too fast for some. Best to listen to your body.
I’m almost in tears in finally finding someone who has shared so much of what I’ve gone through BUT NEVER KNEW WHY! I just recently came to understand that so much of the ‘hell’ I’ve gone through during 2013 was in direct correlation to my tapering down to the smallest possible dose of Klonopin over several months during that time. I was almost diagnosed as having MS or CNS Lupus (although I do have Systemic Lupus) due to all the neuro symptoms going on. It’s been horrendous but now I realize what has actually been going on.
You give me hope that there is light at the end of the tunnel! I pray so … oh, how I pray so! Thank you!!!!
I’m am so desperate to find someone who is going thru what I am experiencing. I’ve been going thru severe klonopin withdrawal for 41 days now. I’ve been tapering myself for over 10 months now. I was on klonopin 2mg four times a day. I tapered it down to .5 mg at bedtime and quit cold turkey 41 days ago.. I was on the highest does a sane Dr could ever give anyone.. I have had a complete chemical lobotomy!!!! Some symptoms have gotten better, but stil having severe terror , panic, sensitivity to everything.. I lost my hearing and have horrible tinnitus. Insomnia is still bad.. Memory loss unable to think or concentrate. Just feel like I’m going to die sometimes.. No support system at all.. No one understands.. Some Drs just laughed at me.. Finally found a Christian based clinic and the Dr is very compassionate . Will this nightmare in hell ever stop!!! I pray continuosly to God… I think sometimes I have irreparable damage.. Someone please tell me it will get better!!!!!!! I could go on and on with
Diane it gets MUCH better! We do recover. It takes a long time for some of us. Please hold on.
I also am grateful for this blog. My son was prescribed Klonipin because of a panic attack. He was only on it for a few months when he began getting brain zaps and funny feelings in his head. When he continued to ask the prescribing doctor if this was coming from the Klonipin, the doctor suddenly dropped him as a patient with the excuse being that he did not seem to be able to meets his medical needs. When he tried to drop the drugs cold turkey, he began to have terrifying withdrawal symptoms. At the time, I thought maybe it was just from the anxiety returning. However the symptoms got worse, and he had a feeling like he was on a boat, a sinking feeling, brain zaps. He happened to be at the beach with friends and called me upset, so I told him to go back on the drug until he could get home. This made the symptoms stabilize for a few weeks. But, the zaps, tinnitis, sinking, boat rocking continued. So, he saw an Ear, Nose and Throat Specialist, an eye doctor and finally a Neurologist who did two sets of EEGs on him. Everything was clear. He also believed along with others that Kevin was just suffering from anxiety. Until I read the Ashton articles and the benzo buddies site, I was also in the dark. My son was so thankful when I finally realized that this was not just anxiety. I shared the articles with his neurologist who at least read through the articles and looked at the websites. He agreed that this indeed must be from the drug, and told him he was going to taper him off. Unfortunately, he tapered him too quickly we’ve found because the taper only lasted 3 weeks. In about 3 days after stopping the drug, TERRIBLE symptoms began. We went to 2 Emergency Rooms a Behavioral Health Center to psychologists and NOBODY knew anything about Benzo Withdrawal. They ALL wanted to put him back on a benzo. They said that was the only hope. So, he went through depersonalization, tremors, the boat, sinking, floating. This was in September. Luckily he was able to get time off from work. The symptoms eased a bit in the beginning of September or maybe he just got a little used to them. We drove in the car for hours, because sometimes that helped him refocus and eased the movement sensations. However, the easing only lasted for a week and then it was full force again. He has been in this pattern since September and it continues today. If he gets sick, the withdrawal intensifies again. He didn’t know about the alcohol possibly aggravating this, and so we feel that may have caused some of his symptoms to intensify. He has been to three different psychologists and one psychiatrist. They have offered no help. Kevin is 24 years old now and feels like his life is at a stand still. Nobody understands. It’s very lonely when every doctor he’s spoken to has said that this could not possibly be coming from benzos. It’s also very scary for him not knowing WHEN or HOW LONG this could last. Presently he works with after school kids at a Day Care. He would like to move on with his life, but feels stuck at the present time. It is so depressing seeing all his friends dating, getting married, getting jobs, enjoying life, and here he sits, a prisoner to these symptoms. We live in North Carolina, and so far I have not located a doctor that is even remotely familiar with benzo withdrawal syndrome. Any advice would be appreciated. I am his Mom and have been traveling down this hellish road with him. It is very hard not being able to make it go away. Just trying to be encouraging and hopeful for him. Thank you for your website.
Linda
It takes awhile for us to heal. Longer than most of us would like. Please encourage your son to minimize stress, to eat super healthy, avoid all booze, caffeine, and drugs or vitamins that can be stimulating. Educate yourself about this syndrome. It is not a pleasant rode to have to travel, I am sorry to say. I am glad your son has you for support. Most doctors are uneducated about the withdrawal syndrome so please reach out to others who are or have experienced it.
We do recover. In time. It took almost 2.5 years for my mental symptoms to go away. I was on the drug a long time and I cold turkeyed. Your son may not take that long. Just letting you know it can take awhile. I still am healing from body symptoms. Have you read the stories on the Support Sites page? That may be of help.
God bless you both on this journey of healing.
Jenn, do you know of anything that’s safe to take for extreme sinus headache and pressure. I’m in a lot of pain but scared to death to take anything. I’m 13 months off Xanax. I don’t know if this is part of withdrawal or just the pollen season in the south. I just know I’ve never suffered this bad before. Thanks for any tips you may have. Diane
Hi Have tapered down for klonopin 4mg day with switch over to diazepam but 20mg to2mg over 9mo then c/t taper was hell each day now at 91days off still hell each day but better than before, having real bad right leg burning, dr thought comming form back took shoots in back but still some back pain and lots of burning leg pain , dr gave me hydrocodone 10mg 3x day but only take it when can’t take pain anymore, afraid of this med. is this burning leg w/d?
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I took my last bit of Klonopin about 3 weeks ago. Starting last week my skin is dry, raw and stinging. It worries me a lot. How long do you think this might last? I worry that it is permanent. Thank you.
I stumbled across this forum. Thank God. I’ve been on klonopin for 13 years. I’ve had anxiety issues most of my adult life. I took 1.5 milligrams 3 times a day. I didn’t think it was a large dose, and I never felt different. My anxiety was okay, not great. About 2 years ago I started to have more anxiety. Also started having weird physical symptoms. Stomach issues, pimples on my face(mind you I’m 59, not a teenager), ear aches, and most profoundly a ton of funky scalp issues – like bumps,dryness and gluey gunk all over my head. After 2 years of trying every scalp remedy, I learned prolonged klonopin use can cause all the above symptoms. I also learned my doctor irresponsibly had me on klonopin waaaaaaay too long. I learned prolonged use can cause anxiety instead of resolve it. So I contacted my therapist and decided to get off the klonopin. While I was tapering he put me on 20 mgrms a day prozac. I’ve been tapering for 7 weeks and hit the wall a week ago. I went too fast. Cut my dosage on half in 3 weeks. Who knew. By week 6, everything went haywire when I was at .5 a day. Major headaches, on the toilet constantly, right leg numb, dizzy, less of an appetite, ears ache, sinuses ache, runny nose. I’m more anxious about my physical reaction, than emotional. Decided today to slide back up to .75 a day and sit on that till I feel stable. Then proceed at a snails pace. This forum is great. I felt like a freak. Thought I was the only one. Thanks to all. I welcome any comments or advice. Peace-Rich
I’ve been on Valium for 20 years with an antidepressant. I am now 7 months completely off the Valium. I did a very fast taper and I had no choice but to do it that way. It has been hell on earth. At the beginning it wasn’t as bad as I thought it would be. But at 6 months off my symptoms has really kicked in. I can’t believe the head pressure I have 24 hours a day and feeling like I’m floating on a boat. It even makes me feel like my head is going to pop. I have tingling sensations all over my body. My balance is so bad that it’s hard to even drive. I just wonder how long the head pressure will last. It’s still hard to even leave the house because of all the symptoms I have. Hopefully it will get better. And also I think about death a lot, does anyone else have that?
i am currently tapering of klonopin. I was at 0.5 mg for almost a year, during which time I had so many horrific symptoms of my nerves in my throat, chest, abdomen, back and ribs. I had felt like I was dying or wanted to it was so bad, hearing a pin drop from across the house, severe muscle tension and knots, then in April my diaphragm got so tight I fell down and couldn’t breathe. I was told it was anxiety, and so up to 1 mg I went… Things got worse rapidly! Crushed to death, severe hyperventilating, troubles breathing, irregular breathing, squeezing, and loud tinnitus, skin crawling, etc. when I found out it was the pill, I reduced to 0.5 mg again in two weeks… Then to 3/8 the following two weeks, and I’m now still there waiting for my muscles and panic attacks to subside to nearly gone before going down another 1/8 mg. I am much better as far as breathing and that’s not saying a lot, the crushing and squeezing stopped, the muscle stiffness and tightness subsided to nearly gone, but I’m in pause as I don’t want to go too fast. So I currently have throat paresthesia, I hate that! Skin on my ribs and abdomen feels like it’s tightening, sore, pains, muscle within abdomen is still tight so hard to breathe when up and moving, and a weird painful feeling in sinuses and throat when I breathe, like it stings and hot air in my airways coming up… So I contacted a neurologist and he said go SLOW. Do 1/8 mg every 2-3 weeks and monitor your bodily responses, to adjust as needed, the breathing and Muscle tension and things will normalize eventually, and the nerve crap should gradually improve once your off, but gradually and not linearly. I read a lot of people’s posts that say they have something that didn’t heal after 14 years… That freaks me out!!! I was never told about any of this when given the med., and I was a very active, teacher, mother, wife, church youth leader, and never stopped!!! Well, this did it. I’ve been severely sick and in pain for a year and a half now. I too pray to die and to heal… Either one would be ok. But, I prefer to heal. A lot of damage was done in one year and 3 months! But, I eat right, walk daily, cry a lot due to the breathing and pain, I pray ALOT, and make sure I rest and read my bible. I know I will make it thru one day, but I suppose you have to get thru the hard stuff first. And it gets worse before better because the receptors that down regulated or were damaged, have to slowly thru energy, protein, and enzymes, heal or establish new connections. I don’t know how to get thru each day, watching everyone live their lives comfortable and I’m in constant misery. But I guess there’s a season for sickness and a season for healing. Ask God for a sign and he will give you one. I did, and I got it, I ask often and he never lets me down. So I know I will heal just don’t know when.
I was on 10 mg klonopin for 2 years went cold turkey now after 6 months I feel fine
Hi.
I come upon your magnificent words at a hard time for me. You have saved my life. Thank you.
I hope you recover quickly!
I am so happy that you are one of the quick healers! Thanks for letting us know that you got well in a short amount of time. Gives everyone hope.
The death obsession is very common. I had it 24/7 for a very, very long time. It was exhausting. It’s gone now. Hold on!
I was prescribed Valium along with an antidepressant 20 years ago. I decided to get off of the in January of this year. I’m on my ninth month off now and still feel horrible. My head pressure is so severe it makes me feel like I’m going to pass out. Also I have this floating sensation all the time. At first I was pretty much bed ridden but have started getting out now. Just my physical symptoms are horrible still. Just wondering how long they will last. Sometimes I feel like I’m going nuts lol
Hi Jennifer-I want everyone to believe that healing really does happen. I was on 5 mg of Valium for 4 years which I c/t’d 12-31-14. By 6 months off I felt so much better and I was healed by 7 months. It’s almost ten months since I swallowed my last Valium and I continue to feel GREAT! I feel like my old self prior to ever taking a Benzo. All of the terrible w/d s/x’s do fade a way and they become a memory. As you begin to heal you start to forget all of the pain and suffering as you start to enjoy living your life again. If I can recommend one thing that helped expedite my healing it was exercise. I highly recommend “Spark” by Dr. John Ratey. I was very fortunate to have been able to contact him and he reiterated how important and beneficial exercise is for the brain. Wishing everyone a speedy recovery.
Thank-you so much for your blog. I read it regularly. I am a little over 3 months off a 4 week use of Ativan. I only took 1-2mg per day. For the first week I was in a constant state of terror. I couldn’t look at the sky or the ocean or go anywhere or do anything without having panic attacks. They were constant and engulfed every aspect of my life. After that week I had a nice window where I felt almost completely normal and thought I was back to 100%. Then the windows and waves started. Here I am now at 3 months and Im scared to cross all the bridges that my job requires me to cross on a regular basis. I still have some other symptoms as well but this fear of bridges is totally new. I’ve never liked heights or really long bridges but not like this. So I am left wondering if this is the natural recourse of my preexisting phobias or if this is just withdrawal and it will pass. I think about bridges constantly. I even have nightmares about bridges. Its so annoying.
I decided to wean myself off of lexapro 20 mg, and klonopin .25. I took both for 2.5 years. I started 3 weeks ago. Lexapro is down to .5. Im off klonopin for good. I am having withdrawals but its hard to tell which med it is from. Experiencing severe shoulder pain, both shoulders, but the right is worse. Severe ankle pain. I did have some minor minimal ankle pain before, but this is a major jump in pain level. I am not sleeping as well, so I diffuse lavender oil to help. I have sporadic shots of pain throughout body. I have the spacey zappy feeling. Im off balance off and on. The worst of all is the joint pain. I have had anger outbursts. I was being treated for depression/ anxiety/ panic disorder. I decided to not rely on meds any longer after seeing my mom try to wean off of her meds. I want to rely fully on God instead. I mentioned to my doctor that I wanted to wean off about 6 months ago. He said I was not ready. I think he was wrong. I decided to do this on my own. I just feel like my body is falling apart.
Hello. Thank you for sharing your story. I was put on xanax 6 months ago for sleep. Within 2 weeks my head began to have severe pressure. I was taking 1mg at night. In between doses I was so sick. Dr. Said it was anxiety and told me to take more. I suggested to her that I thought the xanax was causing it but she said no way. She insisted I take another 1mg during the day. I was fine until it wore off and then I would have this horrible head and neck feeling and all over fatigue. After 3 months she put me on remoron at night and took the night xanax away. I nearly died every night. I thought it was the remoron but now I know it was withdrawals. By then I was having horrible feelings in between doses and she told me to take more xanax. I refused. I continued to suffer in between doses. I was sure I had MS. Have been to Neurologist, sleep dr, gastrointerologist, chiroprator,counseling, keep in mind my dr is sending me to all of these. I started a fast taper 2 weeks ago on my own. Dr. Insists it is all anxiety and not the meds. I am getting off this stuff. In only 2 weeks it took control of me and has stolen 7 months of my life. Like others I prayed God would just take me and wished I would just drop out so someone would take me to hospital and find out what was wrong.The Xanax all along. It makes me so angry.I still have a tough time ahead but thanks to your testimony I have hope. I will be me again and I am so thankful I didnt listen to my dr. When she told me to increase again.
This site is refreshing. I am in full body pain; hopefully another side effect of benzo withdrawal rather than arthritis, MS, Lupus, Lyme disease…..I have been off Clonazepam and Prozac for 7 weeks, but last week started with body pain all over especially at night. I am putting off calling my doctor in hopes this too will go away….although I feel that I am slowly dying. I try to exercise, but everything hurts. Holding a book is painful…will this end? What can I do in the interim?
THANKS
Hi, Leigh I am 5 months out of xanax withdrawl. My question is how long does the racing heart last? My heart rate goes up to 125 when I stand and when I try to do house work 145. I an on a low dose of Beta Blocker it helps very lil. I have and a T.T, Stress Test, Echo, Heart Holitar,Ekg, Ecg blood work.I’m currently wearing an Event Monitor. I have heart palps, flutters and high heart rate and chest pain.I can’t tolerate bring in the sun.I read your journey thorough your withdraw it’s so very heart breaking but at the same time encouraging.I also prayed to die.Now I’m praying to live. Thank You so very much for posting your exsperience.I hope you are doing great. Lots of prayers an Love, Sincerity Peggy ♡
I am very grateful to have found this site! The exact symptoms you exhibited during your withdrawal, is what I have been dealing with for the last year or two. It took me about 6 months to discover that it was Klonopin causing everything, because NONE of my doctors could figure it out. I have been taking 4 mg every day from 2012-2015 for RLS, when my symptoms SUDDENLY began. Once I discovered it was the medicine, I began my own SLOW taper. Through my journey, this has crippled me. I become bedridden every time I taper my dose. I’m currently at 2.65 mg (or so, it’s really hard to break the dose exact- I’ll be asking for a compounded rx soon)down from 4 mg and I haven’t been able to do much more than some laundry, dishes, and work 2 physical demanding days in the last 2 weeks. I’m terrified as to what will happen if my symptoms continue for what I suspect will be another 3 years! I’m self employed and can barely work, I have a very understanding husband, and have 2 wonderful children, but I HATE for them to see me so weak and crazy (crying spells and confusion are horrible to have my children see!). The ONLY positive thing I see from this horrible experience is that I EDUCATE my children on these ‘Dr prescribed so called fix it’s’… BS! Doctors aren’t accountable the risk they are exposing us to when they don’t educate us that if we want to quit taking the medicine, it’s opening the gates to Hell. I pray that I stay strong, but honestly, it’s Damn hard! Thank you for sharing your story, I’m grateful to know there are others out there who understand even when it’s so difficult.
Jennifer, I tried to email you a question but it would not allow me to.
Did you lose a lot of weight with withdraw? Were you able to gain it back?
Becky, many people seem to lose a lot of weight during withdrawal. Oddly, I was not one of them, but it seems to return to normal as your brain heals. Withdrawal can take a heavy toll on our bodies. It’s very hard work. I wish you happy healing.
My name is Mike, 61 years old. I was on Klonipin at 1mg for only 2 years from 04 to 06. I weaned off for 9 months and it was horrible. Ear ringing, body itching, could stand clothes touching my skin, felt like someone cutting me with glass on my limbs, and my ears out of the blue would turn red hot for hours for no reason. It has been 10 years and I still have limb symptoms of itching or uncomfortable feelings someone is cutting me with glass. That has never gone away. I have been to numerous Drs., Neros, MD’s, phych’s and no one has an answer. I had to quit my job in VP of Manufacturing job of 38 years in January because stress makes it so much worse. Constant irritability because of it. No one has an answer. I am miserable and at times don’t want to live with it anymore. Have a few days a week that are better than others that seem like a window only to have it rage back. Anyone know what can be done?
Weight loss is very common. We usually gain it back, and then some!
My doctor told me it’s bit related to stopping klonopin cold turkey after surgery. I feel so miserable I can’t stand it. I can’t think well enough to compose this. Can’t remember people, names, events…you get the idea. Lower back pain, muscle pain, spasms, burning, numbness,tinnitus, migraines, severe panic, noises make me jump and my body shakes…I am struggling. Can’t concentrate at work and I’m traveling for week next week. I’m terrified to go abd I have a brand new boss who doesn’t know me at all. I’ve been off of the 1mg dose 3 1/2 weeks. Add anger issues as well…poor family.
I am weaning off of klonopin right now . First wean was four months ago , was taking .5 three times daily and I cut out my afternoon dose . My anxiety got worse but I hung in there . Getting biofeedback back helped and lots of breathing excersises. Weird feeling in my throat and chest scared me . Got better after around 3 months and now I just cut my morning dose in half . Now taking .25 in an and .5 at night . It’s been two weeks and I feel awful . For some reason cutting my morning dose in half , not even cutting it out complete has been worse than me cutting out the afternoon . Symptoms are scaring me but I’m going to do my best to hang in there . Any other suggestions as to do to help the withdrawals of tingling chest and throat to subside .I want off this terrible drug !!!!! joann
My problems started with quitting 12 mg a night of Ambien CR cold turkey after roughly 10 weeks of nightly usage. Had immediate mild headaches and some sporadic disequilibrium and thought I was OK but then headaches got excruciating and would last for hours. This from a person who never had anything but a hangover his entire life. Took many NSAIDs but nothing helped. Eventually wanted to die so was put on lexipro 10 mg which I took for 4 months for anxiety. During that time I was also prescribed Valium klonopin Xanax and Ativan.
I calculated that during a 4 month period I took the equivalent of about 15 mg of diazepam a day. Sometimes more so times less. Eventually tapered to 2. 5 mg of Valium three times a day and have occasionally taken only two or even one dose. I am having a terrible time the last month with many of the symptoms described above but nobody thinks I am experiencing withdrawal including my Psychotherapist and Doctor. Many times I have wanted to die especially during the bad headaches. I have had many different brain scans with negative results. Can a perso experience benzo withdrawal after usage at those dosages for this period of time?
I am sorry that you are suffering. People can experience withdrawal from a benzo or a Z drug after a very short time of use. Withdrawal is not dose dependent either. People taking small amounts can have big withdrawal symptoms. I hope you feel better soon.
Hi Joann and Dale,
Having your medicine compounded provides a smoother taper as it can be tailored to equal dosing throughout the day and equal reduction of each dose so the blood serum levels stay stable. Otherwise, you will feel more sporadic withdrawal symptoms due to the different levels in your system at different times.
JK
JK, Thank you for your advice but i’m not sure what you mean about having my medicine compounded? Do you think i should cut my pm dose of .5 to .25 and take one in the afternoon and the other 1/2 at night ? Then i would be even out my doses to .25 3x daily . Then eventually i taper from there ? Joann.
Hi Joann, you would need to have your doctor write a tapering script and have it sent to a compounding pharmacy nearby or there are some around the country that can overnight ship across state lines. You could either split it into even amounts 3x throughout the day or even amounts twice a day. Plus, I noticed your cuts are really big. First 33% and second was 25% Generally, smaller more frequent cuts are more tolerable and most likely not have as many severe symptoms. 5-10% around every two weeks.
Hi Jennifer, I am glad you have got through the worst times on these devil potion!
I am having a tough time deciding whether to taper down or continue going cold-turkey. I’m prescribed 0.5 Ativan and have been on it for close to 2 months. I took week to step down to half dose and another half for a another week. I have yet to stabilize on those doses and have completely stop taking for 2 days now..
I can’t get my head round that the worst is still yet to come. Iv been in Diazepam and zopiclone for about 12 years originally prescribed for detox of opiates and at 1point was on 40mg a day minimum plus whatever I could get my hands on to top Mr up. Now I’m down to just 20mg, 4 x 5mg tablets a day but it’s not enough I feel and regularly take extra tablets which leaves me short of tablets towards end of script and I start withdrawing. I end up looking like a skeleton because the weight loss isuuffer for a male at 35 is ridiculous! I mean I feel so ashamed of how I look iv actually become a recluse ex pet for trips to the chemist to get my tablets. I’m in such a state of worry all the time it’s causing other addiction problems to resurface and I just don’t know what to do or where to turn. I’m glad I found your blog and I’m not alone in the symptoms I’m going through but I feel iv got no support at the moment. Family and friends have just had enough of my problems and left me to just get on myself and I understand why. I’m just so lonely and bored I find that using is a break from the mundane of trying to stay straight. I know that isn’t the way to look at it but it’s how I feel. I’m honestly scared about the future and my problem and more terrified of the withdrawal yet to come when I find ally get there. Iv been cut off before and on only day 3 I ended up in hospital. I had a full on fit and convulsion nearly bitting my tongue off and wet myself. I only remember standing up then waking on the floor and I knew it was the tablets. The hospital gave me a Diazepam injection and a note for my Dr saying I’m not ready to stop them and he now doesn’t even see me. My script even says review date March 2014 so that was 3 years ago! And I’m still no better. I’m just at a loss for my recovery and I don’t know how I’m going to get there? Thanks for all the info you provide if anything to just let me know I’m not alone
I am 40 y old. Out of the blue I couldn’t sleep and was pacing all over. The psych put me on sera qul , clonazepam and lamictal. I started tapering off but when I got to clonazepam I felt crazy. The head started to burn from the base to the front and went down my spine. Scared and crying and frantic I went back and was put on Wellbutrin and told I’m going psychotic. I got more scared and ancestors Wellbutrin put me in a state of tension physically and ,mentally , could barely speak , I got off after 2 weeks and put n lexapro and rasp idol . Went to another doc and was put on gaba for burning and got off rasp idol . Now I have the burning. Still and was told to go back on clonazepam .25 mg twice daily . I am a wreck. I’m supposed to see my neurologist next week, I am a mess and husband and family want me to take the meds. Has anyone else experienced burning inside the head?
I am here!!! Holding on!!! I thought that God had forgotten me!! But the day that I met Jennifer I knew He had sent her to me!! It realy has been a bridge of help, while crossing to the orher side of the river!!! Step by step I will be safe on land!! but, this has been the worst thing that ever has happen to me.
I am so glad I found your blog. It is so comforting to know I am not alone in this chaos. People around me don’t understand and I feel like they’re sick of hearing about it. I also have a hard time even explaining what I am going through because I have a hard time formulating words out of my thoughts. Explaining my symptoms to someone is difficult because I don’t even know what they are sometimes. I am roughly 48 days since a rapid taper in a rehab program. I was taking 6-8mg of xanax per day along with an alcohol addiction. They tapered me down to zero in 8 days. I went absolutely insane. I couldn’t sit for more than 60 seconds without getting up and pacing. I couldn’t hold a conversation. I couldn’t formulate thoughts into words. I felt like my entire body was vibrating and buzzing on the inside. I felt like there were match tips on my thighs and chest. Everything felt surreal and far away. There was a ringing in my head. These symptoms lasted a good two weeks and although the acute physical symptoms have subsided, I am left in mental agony. I still feel completely disconnected and out of tune with my emotions. I feel very stoic. I can’t laugh or cry. I have absolutely no sexual desire or libido. I don’t find joy in any activity. Part of me wants to say I’m depressed but I don’t feel sad or even hopeless. I just don’t feel anything. I’m a 33 year old male. I am wondering if I should introduce some anti-depressants at this point? I see a psychiatrist a week from today. While I was in rehab they put me on paxil and i had to get off of it because my depersonalization symptoms got so bad I didn’t even know who I was. I have a hard time remembering things in my past. My short term memory is all but gone. Driving is difficult, watching TV does nothing for me, I can’t get organized, small decisions immobilize me, anything out of the ordinary startles me, I am constantly afraid and jumpy, I have no desire to eat healthy or exercise and many other symptoms that are driving me mad. Has anyone had any luck at this stage with anti depressants?
Hello Jennifer
Can you help?
I have been on clonazepam from September 15 (0.5 to 1.5 mg) for tinnitus, to help me sleep
In December 16, my legs started to feel very heavy and achy, (I’m a keen cyclist and my form just plummeted) so decided to do something it
I read on forums that muscle weakness can be a sign of long term benzo use – is this right?
So I decided to start reducing the clonazepam beginning of February this year
I started tapering and am now on 1/16 of a 0.5 tablet (I cut the tablet with a sharp stanley blade)
What I would like to know is when will my tired muscles (especially thighs) feel fresh again, so that I can ride my bike again at my previous level
Thank you very much for your help
Edward
Doctor prescribed me klonopin after I experienced some personality changes and withdrawals from xanax. Was on and off my Klonopin for a year and a half (using it more frequently during the last few months because I was dealing with a lot). Went through bouts where I’d use it and stop, get worse rebound anxiety, get sick and then get anxiety and use it again. I started to notice my depression get worse as well. I dealt with dysphagia for many years and suddenly it started getting worse. Getting caught in my throat more and jamming up my nose. Choking. At the same time I felt tightness in my left ribs when I would breathe. Then overcompensated Soon my whole torso and neck became tight, spasmed and locked up. Was sent to physical therapy. Decided to stop the on and off klonopin. Soon I couldn’t swallow liquids well either. Suddenly I couldn’t sleep. Then I was waking up gasping for air when I would. Blood pressure went way up (190/100 at extreme). I was always 120/80 and a hiker. Didn’t sleep for weeks. Health went down the tubes. couldn’t eat. Trouble breathing. Muscles continued to tighten and weaken. Took leave from my amazing job teaching people with differing abilities at a theater and drum corps program (still on leave with fear of losing my job and benefits soon). Went to every doctor and received every intrusive test and dozens and dozens of catscans and X-rays. Hormonal stuff out of wack. Got to the point where I stop breathing about 20 times an hour in my sleep and elevated from osa to Csa. Wake up feeling like I’m having a heart attack. Numb. Sometimes limbs can’t move. Spine in constant tightness and pain. Ribs tightened together around my lungs. Started to breathe through my abdomen. That tightened. Food doesn’t seem to do anything. Constantly dehydrated. Cold and heat are too much for me. My vision is blurry and double now. I can barely concentrate. Coordination and cognition is so terrible. Can barely find something right in front of me. Feel completely wrapped in my body. Finally on bp meds, but I’m not sure that will work if this is a neuro reaction to withdrawals and I’m not breathing in sleep. Can’t even concentrate on tv or read. Went back to church. Scared that I’ll die when me and my fiancés relationship got stronger than ever. She needs to see me as a vegetable, crying all the time, scared I’m going to die. I got some hope and the next day is always harder. Have allergies (can. Arely breathe in my basement apartment) yet I’m not allergic to anything. Lock jaw and weak throat. Hurts my back and neck to swallow and clear my nose (which makes it harder to breathe. Force myself to eat more even though the choking and coughing just tighten my ribs neck and back up. Metal taste. Tinnitus. Hard to be outside or around to many people. Too much going on. Living in a nightmare that gets harder every day and I’m two months out. Cold turkey, but my doctor told me to just take them whenever I’m stressed because I didn’t walk to to be on a long term. I’ll take that anxiety any day over this dance with the devil. I feel like I have MsA or dysautonomia or Alzheimer’s. I feel like I brain damaged myself and my dying brain is killing my body along with it. I have so much to do. So many projects and albums unfinished. Some days I was catatonic and could barely move. Barely breathe walk or swallow. Can’t remember this. This is just the tip of the ice berg. When I stand I can barely function. This is just the tip of the ice berg. Everything klonopin made easier for me, it made a million times harder. Almost impossible. I’m just waiting for god to grant me mercy. I don’t deserve another chance, but I promise to enjoy every second.
Forgot to mention that this all started around my birthday. The first year I wasn’t afraid of growing older. I was ready to enjoy myself. Planned a birthday cruise for me and some of my best friends (and my brother) who share a birthday week. To think I was wondering if I was wasting a vacation on a cruise three months ago. The stupid things we worry about. Now I’m in what feels like a hellish nightmare that could end in my death. The things that could nourish and heal me (sleep, excercise, breathing proper and eating have eluded me). A month ago I quit taking small walks (to say nothing about the long weekend hikes I took up to a few months ago), because it became too much for me to handle. Hard enough to walk up the stairs. It’s too bright out there anyhow. Too bright in front of the mirror. I hope all of you get through this <3
I’m not sure if this is still going, meaning the blog. But I would like to speak to you Jennifer. You can email me if you would like. I was researching symptoms of withdrawal off Xanax and this thread came up. Couldn’t read it all but I read your stuff and I just need some help and have some questions. Please email me or anyone for that matter that can help me get off Xanax and be free of it. the popping of the ears and the fullness I’m just ready to be done but I know it takes time but how much time.
Hello, Dr. Jenn, I have been taking xanax since they prescribed them as a miracle drug in 1986 to help me with a Valium addiction. I was born with a rare bone disease OI type 1 severe, and believe my borderline P.D. and panic was caused from a PTSD effect from 75 breaks and all that goes with it..Mostly recovered from OI, I am now a 60 yr. old widow with every physical symptom in the book cycling to new ones. I was so sick for 7 yrs. that I too prayed, but not for death because I was so very sure my destiny was NOT good should I die..I went to a specialist each time the symptoms rotated and a cardio I saw for P.A.C. premature arterial contractions asked me, with a concerned look if I had seen a Rheumatologist..The one thing remaining constant is moderate, yet life-constricting hypoglycemia. I won’t really dwell on the symptoms here cause they are so extensive. I lost my husband in the middle of a 7 yr. debilitation, and my memory was so screwed that I don’t have memories of several yrs. So, I hung on and when I finally did go to the Rheum., I had a positive ANA, (had a previous one too, I think) So, with the symptoms and testing, she is giving a tentative dx of SLE lupus. I still do have really bad days, but in the worst yrs. I really couldn’t say how many xanax I worked up to. When God intervened and gave me back my brain on 12/04/16, and I decided to again, reduce….it was an effort to keep them at 6 mgs. and after 6 mos. I am hovering between 3-4 mgs. Mostly 4. I had kidney, liver, heart, skin,metabolism,bp and brain troubles and began to wonder if the breakthrough w/d’s between doses has caused me this health breakdown, although I was dx wih hypoglycemia at age 7. But I was a little opiate addict thru the OI yrs.(2 yrs. to puberty at 15) taking Demerol elixir as needed for pain. Of course, I could say that I wish I hadn’t taken the first one, but all day panic is a horrible existence and I don’t know if I coulda made it. I don’t remember for sure, but think maybe all this began when I went to an addiction specialist for help and he yanked me off of who knows how much xanax and put me on 2 mg. of klonopin for 3-9 mos. During this time, I lost brain function to the point of running red lights, not knowing how to adjust my a/c and where to put a stamp on the envelope. Other tests revealed a coupla hemolytic blood tests and 4 UA’s revealed sm. amounts of protien, sm. blood cells, sm, amounts of mucous, and sm. amounts of non-renal skin cells. I think this was because my stomach had swelled to 46 in.and I began to pee 20 times or more a day, as my stomach went down to 35 in.and my weight went from 145 o 102, (4’10”)…Could all these issues be a matter of the breakthrough withdrawal of xanax. I do feel quite better with less mgs. but I don’t know if any of this has a thing to do with xanax. I have also been on Methadone for Opiate addiction since 2007 this time. What I fear is the fact that my dr. is 70 and there is a major blockage when it comes to getting a new dr. especially with 47 mgs, of methadone, but my body metabolizes so quickly that it only lasts til about 5 pm. and I can find no one that knows me who thinks they have ever seen me impaired since I quit alcohol in the 90’s and switched to methadone. I don’t usually feel impaired and don’t like to be. I only seek to “get well” not get high….Anyone got anything to advise me on? ….Peace and Love to each of you who need to read this page…Teri
Thanks for stopping by and sharing such a detailed history. Given your situation, I wouldn’t want to give you any advice since I am not an MD. I hope you can find a good benzo-wise doctor who may have some insight for you. Benzos can cause many things, including some of the things you write about, so it would be good for you to find out more about your current condition and symptoms. I hope you feel better soon. Very soon!