WARNING: this post may be triggering for some. It contains details about troubling withdrawal symptoms I had.
I remember waking up to what felt like an explosion in my brain. It wasn’t so much that it was painful, but rather it was as if there was no filter and everything I saw, heard, felt, sensed, etc., was magnified a million times. To make matters worse, my vision was off. It was as if my bedroom had become a carnival fun-house where shapes were pulled and pushed into gross distortions. My hands shook so badly I could barely dress myself. My legs protested carrying my weight as I hobbled down the hallway in search of food, but mostly, in search of normalcy. I hoped that breakfast would help me shake off the strange sensations. Halfway into the kitchen, my legs gave up and buckled underneath me. I grabbed the walls and turned around, groping my way back into my bed. What was happening to me? Was this a bad wave of benzo symptoms, or was I experiencing a true medical emergency? Logic would inform me that I was getting lower in my taper and the bizarre symptoms were a new level of benzo withdrawal, however, my brain wouldn’t hear of it. It went to the scariest place possible, which is what our brains do in benzo withdrawal, and I ended up at the emergency room.
I did my best to inform the nurses that tended to me that I was deep in the throes of benzo withdrawal. They looked at me patronizingly and scribbled down something in their notes. I wasn’t sure if any of them believed me. Feeling defensive didn’t help my symptoms. I shook even harder. A man came into the room and introduced himself as a doctor. He pulled up and a chair and sat down. I leaned forward, hoping to hear some encouraging words that would help me through the rest of my taper. He looked me straight in the eyes and said, very matter-of-factly, “You’re an addict. You need help.” He handed me a brochure about a rehab. I reached out and took it, as that was the polite thing to do, but as I did so I protested his diagnosis. “I’m not an addict. I’ve never abused my prescription. I’m trying to taper off,” I told him. He informed me that if I wasn’t an addict, I’d simply get off the drug. I wouldn’t bother with a long slow taper. In his mind, staying on the drug at any dose meant I was an addict.
“What about withdrawal symptoms?” I asked him. “If I get off too fast, I’ll become more symptomatic.” I raised my trembling hands for him to see the evidence of my suffering. “Spoken like a true addict. Always an excuse to stay on the drug,” was his reply. I knew then that there was no way to reason with him, no way to educate him about withdrawal. Sitting there on the gurney—pale green and yellow curtains hanging around us for a sense of privacy—I felt completely defeated. Was there no one who understood benzo withdrawal that could help me? I was given a dose of Librium to stop the shaking, told to seek an addiction specialist and discharged. I rested in bed all that day, reading posts on benzobuddies.org to help me feel less alone, less misunderstood.
How many of us have been told by uneducated doctors that we are addicts? How many of us have been misunderstood by friends and family for taking so much time to (safely) get off our benzo? Or after we are off and our healing is taking more time than we thought (or like)? It’s a lonely place to be when we aren’t believed, or when we are given bad advice about how to get off our benzo, or how to cope with withdrawal symptoms once off. It’s a lonely place, indeed.
What helped me cope was to stop trying to educate people who didn’t want to understand benzo withdrawal. I turned only to people who were willing to listen and learn, or to others who were going through withdrawal and knew firsthand of my suffering. I did my best to create healthy boundaries. I learned what to share and what not to share. Until the medical community becomes educated about the dangers of benzos, there are always going to be professionals who don’t understand withdrawal. They will assume that those of us suffering from withdrawal are addicts and suggest we go to rehab. They won’t know the dangers of that suggestion. Nor will they understand the dangers of suggesting that we taper off quickly, or that we take other meds or supplements that work on GABA, or a host of other things that we in the benzo community know to avoid.
And that’s the message of this post. Educate yourself. Talk to others in benzo withdrawal. Find out what the common knowledge is among us; the things that help and the things that hinder our healing. Yes, see a doctor if you are concerned about your health. It’s smart to rule out any other cause of your symptoms (just don’t let a doctor intimidate you like the one in the ER did me). But if nothing is found, you can rest easy knowing that in time, your GABA receptors will recover from the benzo damage and you’ll be good as new. Actually, you’ll be better than good, you’ll be amazing. Trust the process. Tap into your inner core strength, your deep well of fortitude, and know, beyond a shadow of a doubt that one day, your benzo withdrawal symptoms will fade away. You. Are. Healing.
Hello Jen.. thanks so much for your inspiring words…what really gave me hope was the old run away post. I am going to look at Peter Levine on Amazon. Big blessings and prayers, Nicki
This aspect of withdrawal was shocking and sobering to me as well. My doctor went from using a ICD diagnostic code for chronic fatigue syndrome, which I was prescribed the benzos for, to Drug dependent. My trips to ER were futile and demeaning as well and I left prescribed a beta blocker which only made things worse in time. I’ve learned now to not get into detail or try to articulate the plethora of horrible symptoms to most people. When my primary care doc asks how is my taper going? I tell him I’m hanging in there, it’s very challenging, but I’m doing it and I appreciate him supporting me throughout this process. PERIOD! No details, comments or trying to explain this horror. I do the same with family and friends as well! I’ve realized others cannot possibly understand what I’m enduring. Very good post Jennifer about the reality of the lack of knowledge out there about these drugs and the medical community. Thank you!
Oh boy do I get this!!!its insane…my family and some friends think I need to go for all these tests..I now have pts from this crap!!! I walk into doctor and start to sweat and blood pressure goes up…I now dislike them very much…yes we do need them for certain things…but I now know there not educated on a lot..listen then give you drugs!!!! I’ve been off benzos for 6 and a half years and still have a lot of symtoms…the worst double vision and static vision…so hard as sometimes I feel I won’t heal…and think I am crazy sometimes…but 8 eye doctors later they mostly say I’m nuts can’t find anything…makes you feel alone ..a very lonely place to be…but I do have you guys and hope that God hears me and one day it will be ok…thx Jennifer for your raw honesty…we will never be the same in a good way….one day life will be normal again!!!!! And boy will we be happy /ecstatic…to be normal again and live to the fullest!!!!! It’s coming hang in.and let’s hope they put and end to this drug soon…..xo
Lynne did you cold turkeyed ?
OMG, Lynne, this really scares me. Even Jennifer was healed and feeling great after 3 or 4 years. Yes she had several bad setbacks but knew what caused them. Please let us know at what point you are healed. Surely you are better than 6 years ago and even 2 or 3 years ago?? Are your symptoms improved to the point you could work a job? Sorry to inquire but hoping you are at least seeing some substantial healing after 6 years. You will be in my prayers going forward. Best wishes and much love, Kathy
Kathy ..yes I am a lot better..please don’t be scared…my most annoying is my vision but others faded and I’m doing much better…I do work and feel much better.after 2-3 years a lot went away but I also fell and had a concusion,I talked to a lot of people and the head injury didn’t help and was also on ambian for years..so I think that’s why my vision is not better yet…it will come and thx for praying for me…one guy had same problem for six years and woke up seeing one day…so I hope and pray everyday I’m next…thx again for asking and prayers…ill keep posted and when I heal I will shout it from the housetops…much love lynne❤️
Lynne can you tell me if you cold turkey ? Because am realy scared am 45 month off now and still in hell with severe symptoms i see everyone heal but i dont i fear i have done permanent change in my receptors .
You sayed you felt better around 2-3 years like jennyfer but i never did and am now near 4 years
Hi Bridget…yes I did cold turkey..I was so afraid to take another pill..it’s not recommended but I did…and yes I did get a lot better at about two years but still like I said have vision issues and some lingering others. And I thought just like you did..but we do heal some just take longer and some wake up one day and it’s just gone..try not to stress out it makes it worse …go for walks do something to get your mind off it..don’t put a time limit on it it gives you Anziety you will heal we all do …I will check this site if you would like to talk when you get that way..that helped me a lot talking to someone who gets it…it’s a rough place to be but you’ll make it..read sucess stories on benzo buddies..try not to just focus on this I know it’s hard…but YOU will heal we all we its just when..❤️
benzobuddies is the most dangerous forum i ever saw, i am that way because of them, they told me i should stay like that instead of going back to my previous dosage and taper slow, i stayed like that in severe hell for 4 years an now i can only realize the disaster that i stayed 4 years in severe hell for nothing, i still wake up with severe terror anxiety, my anxiety chemical never went away 4 years later, i feel terror and hypersensitivty to everything, am suicidal daily, i have severe muscle pain tension, chronic fatigue syndrome POTS syndrome and all, still 4 years later. Just to realize that most of the people i have met who CT too never healed neither 4-5-6 years later while i saw the over 20-30 people i advised to slow taper healed one by one through my eyes going back in life.
Am the worse case i ever saw at that point, still stuck in severe derealisation 4 years later, 24/7, severe anxiety and all, nohing went away, am on the verge of going back on them to restart all over.
What are your lingering symptoms exept eyes problem ?
All the people i see who CT no one healed, they all stay stuck in that hell in some way, while other who slow tapered fully healed and dont have any symptoms anymore, its ridiculous
Bridget, I am so sorry you are still suffering so far out. Sadly, some of us take longer than others to heal. But we all eventually do get better. There is no way to know if you reinstated if you’d have been better off or not. Some who reinstate become kindled and still have the same (or more, or even worse!) symptoms. So, it’s hard to say what that path would have been like for you. I think we all need to do our own research and decide what we think is best for us, instead of only relying on other’s suggestion or advice. The hard part is that there is little that is “black and white” in withdrawal. It’s all a crapshoot as to what you’ll react to. So we can only try things and keep what works and discard what doesn’t. I hope with all my heart that you turn a corner soon! If you do decide to reinstate, please keep us posted on how you are doing. Whatever you decide, we all hope the best for you. I know four years is a long time to still be benzo sick. 🙁
Bridget. Hang in I know what your going through..Jen is right we all heal..this is not any easy thing to go through but again you will heal…you will…!!! Everyone I ever read about does heal it just may take longer. Going back on like Jen said could be worse..just know you will heal….the symptoms I have are just a shadow of what they were I know that anziety and all you mentioned..I had them and had to work since my husband passed away. It was a nightmare but I made it and you will to..have faith you will heal..!!!!.it may be right around the corner you can’t quit…..I’m much better and each day is a step closer…trust God to get you through..pray..keep busy..it will be ok…your not alone we all get it…you will heal!!!!!❤️
some people dont heal am a proof of that, look i am today 46 month off and here are the list of my symptoms :
– 24/7 derealization,/depersonalization, ZERO window in 46 month
– constant severe anxiety, inner akathisia, i dont pace but i feel terror constantly for no reason 24/7 at the moment i open my eyes
– fibromyalgia like symptoms, pains everywhere in my limbs
– constant head pressure headache brainzap
– waking up 3-4 times a night every 1 hour of sleep
– breathing difficulty while nothing show at the test
– electricity feelings in my head, skins, arms, tinglings, numbness
– brain zaps at the smallest eyes mouvement, cant look thing that moove fast
– constant flue like feeling, ill feeling like i am dieing all day like when you have the flue
– severe depression suicidal daily to be that way
I was tapering slow at first reducing 5% every 2 weeks and i never had any symptoms of the list above, NOTHING, until i tryed to accelerate did a mistake and went ill and ended CT in full confusion . THen i have been very badly adviced by benzobuddies who told me to not updose that i was just paradoxical while i hould have go back to my exact previous dosage . I stupidly listened them to just be off the drug and hat my brain would began to heal, that it what it was suppose to do.
It never did after 46 month of and endless hell and i have to restart all over to zero and take benzo again to restart a very long slow taper.
Can you believe that ? It’s just pure insanity, why i never turned a corner in 46 month ? I never drank, never took any othe meds, nothing
Bridget, no one knows why some of us take longer to heal. If you do reinstate, I hope that it is the solution that you are seeking. There are no one size fits all in benzo withdrawal, so hopefully this will work for you if you decide to go back on the drug. Whatever you decide to do, I really do hope for the best outcome for you.