Hi, I’am now two years off Kolonipin, almost the same as you. It would be interesting how our healing goes from here. We all heal differently i know but would be happy to see how you are progressing. Your doing a great job with your videos. So very helpful ! Keep them coming. It’s helpful when you go through all the symptoms. 🦋
Cheers, Brenda. Thanks for your comments. I have made a lot of progress in two years and the worst symptoms are behind me (touching wood!!). That said, I am still dealing with cognitive issues, memory loss, MCAS along with anxiety, occasional panic and things like air hunger. But my baseline anxiety is now better than it was even before I started taking benzos and I continue to see improvement. I am really focused on doing what I can now to continue the healing. It's something I am going to talk about in the next video.
@@windowsNwaves Thanks for replying back! Sounds like you’re making great progress, I think I’am lagging behind but it is getting better. I’am trying to find your video on air hunger. I sure appreciate your support. Enjoy those birds and the walks you take. ❤️🩹
@@brendamalone3880 I think I might have deleted the air hunger video. I was embarrassed with the quality. It was pretty bad. If I was recoverable, I would probably post it again. There is no such thing as lagging behind. Stay on the path -- your pace is unique to you and there is no use comparing progress and timelines. We are all different. You will get there.
I'm actually experiencing my taper right now and I've been looking all over YT for someone to talk about symptoms of withdrawal. I cannot thank you enough for this video. I'm down to .5 a day and just feel under the weather and have muscle pain. Not sure how soon I'll be going down to .25 but hoping if I stay on that for a while it'll help soften the withdrawal symptoms when I'm completely off. This is the most realistic and honest video about getting off of benzos that I have found. You are wonderful and thank you again!
It' good to know that you are better now. Your videos are full of nature, birds , they give very fresh feel. You didn't mention about mental symptoms in this video, I think it's so good that you didn't have any. Now for me, at 10 months off, every day my symptoms are changing, but mainly struggling with mental stuff, that is very difficult to cope with. If I try to engage in present or in some work, my mind brutality pulls me back inward. Severe head pressure, heavy screwed feeling in head is sometimes unbearable, did you have this? As you say that we heal as time passes, but these horrible symptoms are not as intense as they are now. I am scared that my mind is altered by these benzos. it's so difficult to believe that we can recover from this.
I had headaches almost all the time but I think these were really linked to the MCAS that developed post benzos. DP/DR was the worst mental symptom I dealt with. I assume you are considering that a mental symptom? Otherwise I may not understand what you mean? Or are you talking more sensory/physical feeling specifically in your head?
I’m coming up on 33 months and I’m still dealing with windows and waves. My remaining symptoms are depression,dpdr and lack of motivation and some nerve pain. I having windows where it all lifts so I’m getting close thank god.
Hey. Thanks so much for your help. Would you consider doing a video on dp/dr and what you went through??! I’m 3 years out. Did it feel like your brain had a shield around it too. My cognitive sucks too. You look great. Don’t worry. 😊. I posted a few times on your channel. Akathisia is still bugging me but at a more buzzing inside now. Anyway. Thx. 😊❤p
I am so glad to hear the akathisia is a bit better..what an awful thing it is. I will definitely make a video about my dp/Dr experience. I never would have described it that way, but after reading it (the shield around your brain), YES.
So sorry you went through all this! You are truely strong for making it through this total hell. I'm currently taking 1mg of klonopin and tapering super slow. Just curious why did you decide to taper off so quickly and didn't do a micro taper? You're videos are great!
It was mainly a question of supply and access with where I was in West Africa. Thanks for the encouraging words and good luck on your journey. How is it going so far? Tapering super slow is definitely the way to do it.
I have dealt with derealization, depersonalization, and dissociation since I was a kid. I have CPTSD. My first panic attack was from this when I was a very young child, I’m not sure what age, but it was definitely elementary school. It impacted me so much that I remember it very vividly. I had woken up from a bad dream and went outside to play. I remember looking up at a huge tree I was standing under and thinking about my dream. Then I started wondering “what I’d this is a dream right now that someone else is having and they could just wake up?” Then I started feeling like nothing was real, or i didn’t know what was real. Then I had my first panic attack. I don’t remember anything else after standing under the tree. It all probably only lasted minutes, but I’m 50 years old now and it’s still a very vivid memory because of how disturbing it felt.
I have felt a few less intense waves of it since I’ve been tapering but was able to distract my mind with word puzzles and it helped fairly quickly. I’m really worried about going to less than .5 mg and then none. I didn’t know anything about protracted withdrawal when I started tapering 3 years ago, but luckily I had a psychiatrist that warned me to go slowly. I decreased by .5 mg at a time and then would wait for my body to adjust and decrease again when I felt like I could.
You are doing it right. Most of the horror stories are from inadequate or nonexistent tapers. Obviously you have to be exceptionally careful as you had DPDR and other issues before you ever started taking benzos. In my case, I only experienced it during withdrawal, not before. I did have anxiety and panic attacks before. And I will say that post-benzos and post-withdrawal my anxiety is LESS than it was before I started the benzos. Stay on your path. There is no silver bullet and nothing is easy with this stuff, but letting your body adjust before decreasing again is exactly how it should be done.
@@windowsNwaves i really think that eventually mine will be less than before too. I finally found a really good psychologist in my 30’s and went for about 10 years. That helped a lot. I’m also tapering off the Lexapro that I was on for decades but I’m on half as much and I’m not going to decrease that more until I’m off the klonopin. I was also given all kinds of “mood stabilizers” over the years and had horrible effects from most of them. All of this started because I had a reaction to Effexor in my early 20’s and was misdiagnosed with bipolar. It turned out to be ptsd and adhd, but i didn’t get diagnosed with the adhd until I was 40. It’s just crazy to me how much I was gaslighted by so many doctors that didn’t believe I had reactions to these meds. It’s been almost 30 years of all of this. Thanks for responding. I only recently started finding a few channels like these. It was much harder to find information on meds before google existed 😂
@@ShannonPankey two years without taking any? Do you mean healed from just withdrawal or from original symptoms too? How long did you take it and how old are you, if you don’t mind answering?
Your videos are really hopeful. I am 10 months off xanax, but suffering mainly, dpdr, head pains, eye pain with blurry vision, disassociation issues. Dpdr is fluctuating in intensity, but this is the most scary and disturbing symptom. Did you have this? Head pains are also incresed recently. As you are 2 years off, do you feel fully healed? or what sre the symptoms that are left now if any?
I don't feel fully healed yet, no. MCAS is the biggest thing I deal with now, and that could be permanent. I also have cognitive and memory issues and still deal with things like hypnic jerks. Of course, still have anxiety related symptoms as well but overall those are better than they were even when I was on benzos and I have noticed that my symptoms are at their worst in that regard when I have too much histamine, so it may be less a matter of healing from benzo withdrawal at this point and more managing the MCAS. I have absolutely zero regrets about getting off, though. I am so much better now -- in every respect -- than I was while talking benzos.
@@windowsNwaves thanks for replying. Yes I agree, that getting off from benzos is much better in every aspect of our life and health, than being on them. As time passes, we keep on healing every day. I find your videos very helpful. It gives me motivation to keep going in this difficult healing journey 🙏
I am 12 months into withdrawal. 10-20 ml of Valium for 15-20 years. My DPDR was pretty intense. I awoke at least three days where I didn't know who I was. That was very scary. Talk about a panic attack. I am finding those around me are getting sick of me being sick. I can't speak of my illness to nearly anyone. They have had enough and I look fine! lol! Yeah, look. My restless leg was so intense that both my legs were going at once for months. Sleep was unobtainable. Hypnic jerks. I had 500-1000 different points on my body all firing at once for hours while trying desperately trying to sleep interrupted with these hypnic jerks like someone slamming their fist into your back every 5 minutes or so. Did you have that? After 12 months off I am finding my brain working incredibly well in the fact that I can figure things out in a split second and am surprised by it. I like your art. Keep drawing. It is very soothing. My memory is bad in the aspect of remembering what I went through during my acute phase and after that for about 6 months. I did take notes. Glad I did. I agree that my life may be a crazy train, but it is preferable to the bland, grey, life I was leading during the drug intake. I have zero regrets just like you. I have read that after acute withdrawal, you get convinced that the drugs are the answer, again. I have made a promise to myself that if I am going to off myself, and am serious, I will go back on the drugs to save my family from that sadness and generational misery. Like the video and thanks again for posting.
Hey Jim, there were two things that your wrote that as soon as I read them it was like a heat seeking missile to my brain. That sense of not knowing who you were-- yes! My god it's terrifying. I remember thinking this is what madness feels like. It was as if all the electrical signals in my brain were just colliding and nothing was getting through. I had become untethered from my sense of self. Wow. Terrifying. I hope to never experience that again. And the RLS and hypnic jerks. For me the hypnic jerks felt like someone had hooked me up to a defibrillator and they were just toying with me, randomly delivering bursts of electricity to my body. Thanks for sharing so much of your experience here. I am sure it is helpful for others -- I know it is helpful for me. To our continued healing
@@jimferrill1790 were you able to taper off them or did you suddenly stop? I also experience those hypnotic jerks that wake me from sleep. It’s not often, thankfully, but it’s frustrating and unsettling. I struggle with sleep even when they don’t happen. Now that I’m thinking about it, they did happen more at the times I decreased. I also relate to feeling like people in my family don’t understand. I moved in with my mother about 7 years ago to get out of an abusive relationship quickly. However, my mother has some very narcissistic traits and has caused me more trauma. She is a retired psych nurse and worked in the local hospital ER for 30 years. In the last 7 years there have been 3 times that she had these episodes of anger and has even assaulted me before. Then, she called the local police, many of whom she knows personally from work, and just lied to them about me. All 3 times I was forced to go to the ER and be evaluated even though i never hurt anyone else or myself. I was treated horribly in that ER by her coworkers and was never even properly evaluated. I was also detained against my will for about a week each time. The last time it happened, I asked to be taken to the ER in the neighboring town and during that evaluation, I told them about all of this abusive behavior. I thought i would be safe. Instead, I was labeled as “paranoid” and committed against my will to that hospital for a week. When I was there, they told me that they didn’t find any klonopin in my system. I was down to about .5 mg at the time and told them to call my doctor to confirm it. They never did, and I was forced to go a week without any and that’s when I had serious blood pressure issues, panic, and a lot more depersonalization and derealization. It was a week of pure hell. After that, my doctor, the only one I trust, advised me to go back to the .5 mg I was taking before that week happened and taper from there. He has been supportive of me tapering at my own speed. I’m on disability so i can’t just easily move and I am saving money and just doing my best to minimize contact with my mother and to do my best to not react. Only you know what is best for you and what you feel. I understand that it’s very difficult when you don’t have supportive family. We can’t heal on anyone else’s timeline and i don’t think it’s fair of anyone to ask us to. They don’t feel what we feel. I hope for more comfort and continued healing for you.
Yah I lost a good friend while in tolerance withdrawal and being kindled .... Pretty sure that person had enough of me always complaining it sucks I hope you are well
Well Phil , this is my 7th video today here on your channel , and I feel I learned more about what I am going through .... Many mistakes with my food , all the histamine issue I did not know... This channel of yours is very much a classroom for me ... From now on I know because of your experiences , what I can expect to happen with me and my path of withdrawal . Gracias amigo . , te saluda Miguel Angel from Argentina .
Hi Miguel, I am just reading through your comments now. Keep in mind, your experience could differ from mine. There is a wide spectrum of experiences and possible symptoms on this journey. Wishing you all the best
Wow, I already have all the symptoms you listed for MCAS that you mentioned. I also started getting hives, sweating, and a specific kind of eczema on the palms of my hands.
@@windowsNwaves not really other than the vitamins. As far as elimination, being on a soft food diet right now makes it tough. My mom has celiac’s disease but I was tested for that with a biopsy because 3 of her sisters had it too, so they wanted to make sure. I don’t have it, thankfully. I wouldn’t be surprised if I had food intolerances though. I have regular allergies both indoor and outdoor. Pollen, dust, etc…
5 years out for me. Most of the more intense symptoms have resolved but I am left with weight gain, vascular issues, rapid aging, fear of driving, agoraphobia, hypersensitive, moody, prolapsing organs, just to name a few. No, we don't all heal.
hey mate, I am so sorry you are still dealing with symptoms. You are right, we don't all heal and even when we do, it's not uniform or consistent in any sense. I hope that some way, somehow things will get better and you will find more relief in the future
I’m coming up on 5 years after CT klonopin. Do NOT recommend CT but had no docs willing to admit it’s a problem in my town. About 70% of me has returned, but I’m still riding the struggle bus.
Sorry to hear you went through this -- and are still going through it. I had a poorly executed taper and even then, I can not imagine CT. I did have a brief taste of it during an episode where I temporarily ran out of my supply of lorazepam. I had akathisia for about 12 hours straight before checking into a hospital. I hope your healing continues and the struggles become a thing of the past.
Unfortunately, I’m one of those people with chronic akathisia. Most of my worst symptoms didn’t erupt until I was 4-12mths off. My inner akathisia exploded 60-90 days off, but I didn’t start pacing until 14mths off. I have stood 18-40hrs for over 3 years. The first things I noticed was a tinnitus explosion 30 days off. I noticed it increasing on the way down but this was from another planet. It was a freight train on rails. It is still there 4 years off, I just acclimated to it. It’s maybe gone down 10-20%.
I had the same experience with my symptoms. They didn’t start until around 4 months off. Then just kept getting worse, sorry to say. Good luck to you Keep going!
I was on 1mg for 10 years I’m doing a liquid compound taper from Ativan my experience with my taper is not sleeping having more anxiety and panic..6 months into my taper.
@@windowsNwavesit bothers me when people generalize that it depends on how long you were on and the dose. Fallacy. Many people are on for a short time, only a benzo, and take years and years to heal. I took 1mg or less of k for less than 6 months and I just had my seven year anniversary. I’m still at 80-90%. So my “really” comes from a misinformation frustration. Hypnotic jerks will go too but it took some time.
@@McStorch0 Ah, I'm sorry, I got you. Yeah, you are right. I was careless with that. I think it's perhaps reasonable to say that the longer you are on and higher the dose it is more likely that you will need a long taper/the chances of wd symptoms become more inevitable BUT at the same time, you can still get the whole package even if you were only a small amount for a short time. Glad to hear hypnic jerks went away (or will go away in my case). I hope your healing continues.
@@McStorch0I've been on Clonazepam for around 40 years. So no, not everyone is on for a short time. I'm very glad he said what he did and that he's sharing. It also depends on which benzo you took. I'm having withdrawals and benzo flu right now. I'm just trying to get through this.
I got derealization while still on a low dose of Valium only a month on it for neck muscle tensions giving me migraines. That prompted me to immidiately want to be off and I did 3 day in hospital voluntary for that with gabapentin and flexeril and it work for me! When I couldn't sleep from muscle issues and restless leg and neck pain was in full swing again flexeril put me back to sleep. So but this is for only 1 month on 5 mg Valium so they know how to handle that ok but long term prob not so well. Oh and I took clonidine for high blood pressure AND to relax which was great.
Crazy that only a month could lead to DPDR episodes, but that just goes to show how insanely powerful these drugs are. I am glad to hear that the medical detox worked for you!
All of those things are certainly important. I would emphasize light exercise in the beginning. Overexertion can trigger a stress response and in my case, it actually triggers my MCAS.
I’m doing a liquid taper off Ativan.I been tapering for 4 months I can say my body feels different I have more anxiety and I’m not sleeping.Is this normal when you taper off.
I was on ativan 4 months on 1mg. I stopped it.....and 6th day it started huge withdrawal....It was like I was plugged into the fastest electricity plug up my spine 4 11 weeks. Hell on earth....couldn't sleep.....for 11 weeks.....insomnia from anxiety 100x worse than y I even went on the medication......12th week it was like a bus hit my brain....like a blow to the brain....deep calm.....total polar opposite....now extreme fatigue. I am 12 weeks off now....and still will have 3 months to build neurons back and strength.
I was on ativan 4-5 months on 1mg. I stopped it.....and 6th day it started huge withdrawal....It was like I was plugged into the fastest electricity plug up my spine 4 11 weeks. Hell on earth....couldn't sleep.....for 11 weeks.....insomnia from anxiety 100x worse than y I even went on the medication......12th week it was like a bus hit my brain....like a blow to the brain....deep calm.....total polar opposite....now extreme fatigue, days lasting calm, to then severe light sensitivity, to severe anxiety.....windows free....yet only last a short time.. I am 12 weeks off now....and still will have 3 months to build neurons back and strength. Coming off lorazapam is a severe trauma.
Yeah the withdrawal was also kind of a delayed fuse for me, too. But once it started, man.... It sounds like you have made it through the thick of it -- it will keep getting better! Coming off lorazepam is indeed severe trauma.
@@windowsNwaves your brilliant to help us all.....I hope I have....I am taking l theanine, melatonin 20mg, cbd Tasmanian 10:10, lions maine, magnesium glycinte, zinc, retinol A 10,000IU, st john's wart by flordis. The most severe part of this has been the inability to sleep for 11 weeks straight. I swear this drug causes more damage than it does good. It's like a major disability stopping it. Severe trauma.
2 years and change with a couple months of sporadic diazepam before it. I was taking 1.25mg but some days more than that. had a very abrupt taper down to .5 mg for one month and then .25mg for a month and then off. Very much regret the hasty taper...
@windowsNwaves thankyou. I feel if people write, how much, how long, and what dose people can start to figure out how long there withdrawal will be and how long side effects, this can bring direction and HOPE....thankyou.
@@MrPeterISABELLA everyone is different, but that said, yes, I completely agree that the more we talk about it and the more info we can share, the more helpful it is when it comes to knowing possible outcomes, and yes, having hope!
shit fucking SUCKS! i get no breaks in life.. i've been on 10mg methadone tablets five times per day, and Klonopin, 0.5mg 4 times per day.. for almost a decade now, my life has become hell, i don't know what to do... i feel no emotion. i'm dead inside, my brain is perma damaged, pray for me.
It may feel like it, but it's possible that your brain is not in fact permanently damaged. I know that feeling that you are talking about, though -- no emotion, dead inside. That was the feeling that drove me to get off benzos.
Yes, i don’t think it’s permanent, but if you do decide to stop taking them, try to do it slowly. I was on benzos for over two decades and I’ve been tapering for 3 years and i went from 3mg of klonopin a day to now taking .5 but some days .75 now. I think I will need to decrease in smaller increments to go lower than .5mg. I was just lucky that I had a doctor that warned me about decreasing too fast. I really didn’t understand how serious it could be. It still makes me angry that people aren’t informed enough about these things
No i don't believe in permanent damage I was on effexor amisulpride plus benzo jumped on a lot of them xanax Clonazepam Etizola I'm not losing hope and you shouldn't too ..... But the time frame holy shit that's what freaks me out I'm 7 months off now
@@Default6476 I had an adverse reaction to Effexor in my 20’s that led me to being misdiagnosed as bipolar and put on many medications i never needed for years. I just turned 50. There was no history of bipolar in my family and the only time in my life that I ever felt what they labeled as mania was when I took Effexor. When I was 40, that diagnosis was removed and I was diagnosed with adhd and that does run in my family. I was also diagnosed with ptsd and I do believe that diagnosis is correct. All of the medications I was prescribed for bipolar only made me feel much worse and I had many bad side effects from them. I do think that our bodies have an incredible capacity for healing, but it does take time. I think it’s important to be patient and forgiving with ourselves. Many of us have been “beat up” enough by doctors and other health professionals, and maybe even society, so it’s not uncommon to beat ourselves up. There are so many factors to healing too, and it’s not the same for everyone. I can say for me, that adjusting my diet (mainly quitting soda) and taking vitamins has seemed to help, particularly Vitamin D. It’s certainly not a cure but I appreciate anything that helps. It’s not easy being patient, but we deserve grace and the ability to nurture ourselves. I’m also grateful to hear the stories of others because I felt gaslit for so long into feeling like it was all my fault. I think we could all learn from each other and at the very least feel supported and know that we are not alone in this.
Would CBD or Cannabis help with the withdrawals and seizures? CBD has been used for epileptic seizures and neurolgical issues. Cannabis doesn't have severe withdrawal issues and can relieve anxiety symptoms. Would this help?
Cannabis has been shown to act on the same GABA receptors as benzos so it can be problematic if you are trying to rehabilitate said receptors, which is exactly the goal during wd. That said, some people seem to find significant relief. Seizures is a different story and I won't pretend to know the research there. Anyway, at the end of the day, as you have probably gleaned from poking around on the internet, a lot of us are navigating through this completely in the dark and there is a lot of self-experimentation/figuring out what works for me etc.
You mentioned to stay away from anything that interferes with GABA receptors when your healing . What are things to stay away from ? And if you interfere with your GABA receptors during healing how long does it add on to the recovery journey ?
This is an incredibly good resource on GABAergic substances: www.benzoinfo.com/medications-and-supplements/ As far how much healing will be prolonged, I would say that it's different for everyone. It really depends on how much downregulation has occurred with your GABA receptors. Basically benzodiazepines make your GABA receptors incredibly efficient at binding with GABA, so much so that your brain starts to decommission (downregulate) GABA receptors because it doesn't need as many to do the same job. When you stop taking the benzodiazepines, your brain cannot just snap back into action all the decommissioned GABA receptors. It takes time. If you take something that acts on your GABA receptors (or introduces more GABA to your brain), it could cause your brain to pause its GABA receptor rehab efforts. You just want to give those GABA receptors a wide berth to rehabilitate and hopefully come back as close to 100% as possible. Any curve balls you throw your brain in the meantime will just slow down the process.
@@windowsNwaves Ok thanks a lot that helps. I am recovering from Phenibut, which is a cousin to the benzos but withdrawals are the same and it acts on the GABA receptors. The only prolonged symptoms I’m still having are poor memory (short term and long term) and apathy. I quit about 10 months ago but I was using supplements for sleep that acted on the GABA receptors so it probably delayed healing. I am a little worried about memory , does it ever return to normal ??
I still have memory issues nearly 2 years off. But I have seen improvement in that area. I hope it will keep getting better. Good luck on your journey.
Magnesium helps a lot with the heart palpitations plus going on benzo buddies on line is very reassuring that other people are having the same symptoms as you. Took me 3 yrs. to heal all the way
@@Default6476 please be patient with yourself. It’s definitely not an easy journey but I do believe it’s worth it. Sometimes we can run and sometimes we can only crawl and that’s ok. I think healing might not be a straight line going up, but one that has ups and downs but still gradually goes up overall. 💜
Comforting that the tinnitus went away for you. I'm almost 6 months off (short term user) so I'm praying it goes away soon...I want to experience silence once again!
yes, it is :) Although, I don't quite look like that now. That was a couple months ago and I was taking efudix, which is like a chemotherapy cream to treat precancerous and cancerous skin cells. The treatment is horrific and makes your face itch and burn, not to mention you look like you have suffered radiation poisoning!
Hi, I’am now two years off Kolonipin, almost the same as you. It would be interesting how our healing goes from here. We all heal differently i know but would be happy to see how you are progressing. Your doing a great job with your videos. So very helpful ! Keep them coming. It’s helpful when you go through all the symptoms. 🦋
Cheers, Brenda. Thanks for your comments. I have made a lot of progress in two years and the worst symptoms are behind me (touching wood!!). That said, I am still dealing with cognitive issues, memory loss, MCAS along with anxiety, occasional panic and things like air hunger. But my baseline anxiety is now better than it was even before I started taking benzos and I continue to see improvement. I am really focused on doing what I can now to continue the healing. It's something I am going to talk about in the next video.
@@windowsNwaves Thanks for replying back! Sounds like you’re making great progress, I think I’am lagging behind but it is getting better. I’am trying to find your video on air hunger. I sure appreciate your support. Enjoy those birds and the walks you take. ❤️🩹
@@brendamalone3880 I think I might have deleted the air hunger video. I was embarrassed with the quality. It was pretty bad. If I was recoverable, I would probably post it again. There is no such thing as lagging behind. Stay on the path -- your pace is unique to you and there is no use comparing progress and timelines. We are all different. You will get there.
@@windowsNwavesthank you 🙏 you’re wonderful! God bless you. ❤❤❤❤
@@alisonderrick1067❤
I'm actually experiencing my taper right now and I've been looking all over YT for someone to talk about symptoms of withdrawal. I cannot thank you enough for this video. I'm down to .5 a day and just feel under the weather and have muscle pain. Not sure how soon I'll be going down to .25 but hoping if I stay on that for a while it'll help soften the withdrawal symptoms when I'm completely off. This is the most realistic and honest video about getting off of benzos that I have found. You are wonderful and thank you again!
Glad you got something from it. Wishing you all the best in your healing. Definitely take your time with the taper.
It' good to know that you are better now. Your videos are full of nature, birds , they give very fresh feel.
You didn't mention about mental symptoms in this video, I think it's so good that you didn't have any. Now for me, at 10 months off, every day my symptoms are changing, but mainly struggling with mental stuff, that is very difficult to cope with. If I try to engage in present or in some work, my mind brutality pulls me back inward. Severe head pressure, heavy screwed feeling in head is sometimes unbearable, did you have this? As you say that we heal as time passes, but these horrible symptoms are not as intense as they are now. I am scared that my mind is altered by these benzos. it's so difficult to believe that we can recover from this.
I had headaches almost all the time but I think these were really linked to the MCAS that developed post benzos. DP/DR was the worst mental symptom I dealt with. I assume you are considering that a mental symptom? Otherwise I may not understand what you mean? Or are you talking more sensory/physical feeling specifically in your head?
I’m coming up on 33 months and I’m still dealing with windows and waves. My remaining symptoms are depression,dpdr and lack of motivation and some nerve pain. I having windows where it all lifts so I’m getting close thank god.
Glad to hear you are starting to have some of those more convincing windows. I hope things keep moving in that direction!
Hey. Thanks so much for your help. Would you consider doing a video on dp/dr and what you went through??! I’m 3 years out. Did it feel like your brain had a shield around it too. My cognitive sucks too. You look great. Don’t worry. 😊. I posted a few times on your channel. Akathisia is still bugging me but at a more buzzing inside now. Anyway. Thx. 😊❤p
I am so glad to hear the akathisia is a bit better..what an awful thing it is. I will definitely make a video about my dp/Dr experience. I never would have described it that way, but after reading it (the shield around your brain), YES.
So sorry you went through all this! You are truely strong for making it through this total hell. I'm currently taking 1mg of klonopin and tapering super slow. Just curious why did you decide to taper off so quickly and didn't do a micro taper? You're videos are great!
It was mainly a question of supply and access with where I was in West Africa. Thanks for the encouraging words and good luck on your journey. How is it going so far? Tapering super slow is definitely the way to do it.
I have dealt with derealization, depersonalization, and dissociation since I was a kid. I have CPTSD. My first panic attack was from this when I was a very young child, I’m not sure what age, but it was definitely elementary school.
It impacted me so much that I remember it very vividly. I had woken up from a bad dream and went outside to play. I remember looking up at a huge tree I was standing under and thinking about my dream. Then I started wondering “what I’d this is a dream right now that someone else is having and they could just wake up?” Then I started feeling like nothing was real, or i didn’t know what was real. Then I had my first panic attack. I don’t remember anything else after standing under the tree. It all probably only lasted minutes, but I’m 50 years old now and it’s still a very vivid memory because of how disturbing it felt.
I have felt a few less intense waves of it since I’ve been tapering but was able to distract my mind with word puzzles and it helped fairly quickly. I’m really worried about going to less than .5 mg and then none.
I didn’t know anything about protracted withdrawal when I started tapering 3 years ago, but luckily I had a psychiatrist that warned me to go slowly. I decreased by .5 mg at a time and then would wait for my body to adjust and decrease again when I felt like I could.
You are doing it right. Most of the horror stories are from inadequate or nonexistent tapers. Obviously you have to be exceptionally careful as you had DPDR and other issues before you ever started taking benzos. In my case, I only experienced it during withdrawal, not before. I did have anxiety and panic attacks before. And I will say that post-benzos and post-withdrawal my anxiety is LESS than it was before I started the benzos. Stay on your path. There is no silver bullet and nothing is easy with this stuff, but letting your body adjust before decreasing again is exactly how it should be done.
@@windowsNwaves i really think that eventually mine will be less than before too. I finally found a really good psychologist in my 30’s and went for about 10 years. That helped a lot.
I’m also tapering off the Lexapro that I was on for decades but I’m on half as much and I’m not going to decrease that more until I’m off the klonopin.
I was also given all kinds of “mood stabilizers” over the years and had horrible effects from most of them.
All of this started because I had a reaction to Effexor in my early 20’s and was misdiagnosed with bipolar.
It turned out to be ptsd and adhd, but i didn’t get diagnosed with the adhd until I was 40. It’s just crazy to me how much I was gaslighted by so many doctors that didn’t believe I had reactions to these meds. It’s been almost 30 years of all of this.
Thanks for responding. I only recently started finding a few channels like these. It was much harder to find information on meds before google existed 😂
I’m 2 years off feels like I haven’t healed at all should I start over
@@ShannonPankey two years without taking any? Do you mean healed from just withdrawal or from original symptoms too? How long did you take it and how old are you, if you don’t mind answering?
Your videos are really hopeful. I am 10 months off xanax, but suffering mainly, dpdr, head pains, eye pain with blurry vision, disassociation issues.
Dpdr is fluctuating in intensity, but this is the most scary and disturbing symptom. Did you have this? Head pains are also incresed recently.
As you are 2 years off, do you feel fully healed? or what sre the symptoms that are left now if any?
I don't feel fully healed yet, no. MCAS is the biggest thing I deal with now, and that could be permanent. I also have cognitive and memory issues and still deal with things like hypnic jerks. Of course, still have anxiety related symptoms as well but overall those are better than they were even when I was on benzos and I have noticed that my symptoms are at their worst in that regard when I have too much histamine, so it may be less a matter of healing from benzo withdrawal at this point and more managing the MCAS. I have absolutely zero regrets about getting off, though. I am so much better now -- in every respect -- than I was while talking benzos.
@@windowsNwaves thanks for replying. Yes I agree, that getting off from benzos is much better in every aspect of our life and health, than being on them. As time passes, we keep on healing every day. I find your videos very helpful. It gives me motivation to keep going in this difficult healing journey 🙏
I am 12 months into withdrawal. 10-20 ml of Valium for 15-20 years.
My DPDR was pretty intense. I awoke at least three days where I didn't know who I was. That was very scary. Talk about a panic attack.
I am finding those around me are getting sick of me being sick. I can't speak of my illness to nearly anyone. They have had enough and I look fine! lol! Yeah, look.
My restless leg was so intense that both my legs were going at once for months. Sleep was unobtainable. Hypnic jerks. I had 500-1000 different points on my body all firing at once for hours while trying desperately trying to sleep interrupted with these hypnic jerks like someone slamming their fist into your back every 5 minutes or so. Did you have that?
After 12 months off I am finding my brain working incredibly well in the fact that I can figure things out in a split second and am surprised by it.
I like your art. Keep drawing. It is very soothing.
My memory is bad in the aspect of remembering what I went through during my acute phase and after that for about 6 months. I did take notes. Glad I did.
I agree that my life may be a crazy train, but it is preferable to the bland, grey, life I was leading during the drug intake. I have zero regrets just like you.
I have read that after acute withdrawal, you get convinced that the drugs are the answer, again. I have made a promise to myself that if I am going to off myself, and am serious, I will go back on the drugs to save my family from that sadness and generational misery.
Like the video and thanks again for posting.
Hey Jim, there were two things that your wrote that as soon as I read them it was like a heat seeking missile to my brain. That sense of not knowing who you were-- yes! My god it's terrifying. I remember thinking this is what madness feels like. It was as if all the electrical signals in my brain were just colliding and nothing was getting through. I had become untethered from my sense of self. Wow. Terrifying. I hope to never experience that again. And the RLS and hypnic jerks. For me the hypnic jerks felt like someone had hooked me up to a defibrillator and they were just toying with me, randomly delivering bursts of electricity to my body. Thanks for sharing so much of your experience here. I am sure it is helpful for others -- I know it is helpful for me. To our continued healing
@@jimferrill1790 were you able to taper off them or did you suddenly stop? I also experience those hypnotic jerks that wake me from sleep. It’s not often, thankfully, but it’s frustrating and unsettling.
I struggle with sleep even when they don’t happen. Now that I’m thinking about it, they did happen more at the times I decreased.
I also relate to feeling like people in my family don’t understand. I moved in with my mother about 7 years ago to get out of an abusive relationship quickly. However, my mother has some very narcissistic traits and has caused me more trauma. She is a retired psych nurse and worked in the local hospital ER for 30 years. In the last 7 years there have been 3 times that she had these episodes of anger and has even assaulted me before. Then, she called the local police, many of whom she knows personally from work, and just lied to them about me. All 3 times I was forced to go to the ER and be evaluated even though i never hurt anyone else or myself.
I was treated horribly in that ER by her coworkers and was never even properly evaluated. I was also detained against my will for about a week each time. The last time it happened, I asked to be taken to the ER in the neighboring town and during that evaluation, I told them about all of this abusive behavior. I thought i would be safe. Instead, I was labeled as “paranoid” and committed against my will to that hospital for a week.
When I was there, they told me that they didn’t find any klonopin in my system. I was down to about .5 mg at the time and told them to call my doctor to confirm it. They never did, and I was forced to go a week without any and that’s when I had serious blood pressure issues, panic, and a lot more depersonalization and derealization. It was a week of pure hell.
After that, my doctor, the only one I trust, advised me to go back to the .5 mg I was taking before that week happened and taper from there.
He has been supportive of me tapering at my own speed.
I’m on disability so i can’t just easily move and I am saving money and just doing my best to minimize contact with my mother and to do my best to not react.
Only you know what is best for you and what you feel. I understand that it’s very difficult when you don’t have supportive family.
We can’t heal on anyone else’s timeline and i don’t think it’s fair of anyone to ask us to. They don’t feel what we feel.
I hope for more comfort and continued healing for you.
Yah I lost a good friend while in tolerance withdrawal and being kindled .... Pretty sure that person had enough of me always complaining it sucks I hope you are well
Well Phil , this is my 7th video today here on your channel , and I feel I learned more about what I am going through .... Many mistakes with my food , all the histamine issue I did not know... This channel of yours is very much a classroom for me ... From now on I know because of your experiences , what I can expect to happen with me and my path of withdrawal . Gracias amigo . , te saluda Miguel Angel from Argentina .
Hi Miguel, I am just reading through your comments now. Keep in mind, your experience could differ from mine. There is a wide spectrum of experiences and possible symptoms on this journey. Wishing you all the best
Wow, I already have all the symptoms you listed for MCAS that you mentioned. I also started getting hives, sweating, and a specific kind of eczema on the palms of my hands.
Have you tried any supplements or doing a kind of elimination diet?
@@windowsNwaves not really other than the vitamins. As far as elimination, being on a soft food diet right now makes it tough. My mom has celiac’s disease but I was tested for that with a biopsy because 3 of her sisters had it too, so they wanted to make sure. I don’t have it, thankfully. I wouldn’t be surprised if I had food intolerances though. I have regular allergies both indoor and outdoor. Pollen, dust, etc…
Was it on your fingers like there little itchy bumps?
@@Aseeyah-vt9kl yes, on my fingers and the palms of my hands. Like tiny blisters and extremely itchy
@@punkroxgirl yes, this is from toxicity regardless of what they call it. Mine is gone.
5 years out for me. Most of the more intense symptoms have resolved but I am left with weight gain, vascular issues, rapid aging, fear of driving, agoraphobia, hypersensitive, moody, prolapsing organs, just to name a few. No, we don't all heal.
hey mate, I am so sorry you are still dealing with symptoms. You are right, we don't all heal and even when we do, it's not uniform or consistent in any sense. I hope that some way, somehow things will get better and you will find more relief in the future
I’m coming up on 5 years after CT klonopin. Do NOT recommend CT but had no docs willing to admit it’s a problem in my town. About 70% of me has returned, but I’m still riding the struggle bus.
Sorry to hear you went through this -- and are still going through it. I had a poorly executed taper and even then, I can not imagine CT. I did have a brief taste of it during an episode where I temporarily ran out of my supply of lorazepam. I had akathisia for about 12 hours straight before checking into a hospital. I hope your healing continues and the struggles become a thing of the past.
3 years clean. Still damaged. There's no hope. I was on Ativan 14 yrs.
I am so sorry to hear that. Any windows or improvement during that time?
@@windowsNwaves Yeah, seems like I have bad days if I eat too much sugar. So bad I can hardly walk. Its like the sugar crash from hell.
@@CBT5777 sugar is very problematic for me as well
Ps. You should frame and sell the drawings. There awesome. 😎
Ohhh thank you so much ❤️
Unfortunately, I’m one of those people with chronic akathisia. Most of my worst symptoms didn’t erupt until I was 4-12mths off. My inner akathisia exploded 60-90 days off, but I didn’t start pacing until 14mths off. I have stood 18-40hrs for over 3 years. The first things I noticed was a tinnitus explosion 30 days off. I noticed it increasing on the way down but this was from another planet. It was a freight train on rails. It is still there 4 years off, I just acclimated to it. It’s maybe gone down 10-20%.
I am so sorry. I honestly can't imagine. What were you on before? So it was like.a. Delayed fuse with the akathisia?
I had the same experience with my symptoms. They didn’t start until around 4 months off. Then just kept getting worse, sorry to say. Good luck to you Keep going!
@@brendamalone3880 Did you have akathisia too?
I had it for 2 years non stop before it gave up with insane terror. I am so sorry youre still suffering from it.
@@brendamalone3880same. 4 month mark for me too
I was on 1mg for 10 years I’m doing a liquid compound taper from Ativan my experience with my taper is not sleeping having more anxiety and panic..6 months into my taper.
Hey Shirley, I hope everything you are going through will help make that moment when you finally jump off that much easier ❤️🙏
But my doubt is this: how can a d0ctor give u prescription for so long? 10 years for SSRI is insane !!
Really? Less than six months of klonopin (only psych med Ive ever taken) and coming up on my 7 year anniversary.
what is the really? in response to -- sorry I may be missing something. That is certainly an anniversary worth celebrating.
@@windowsNwavesit bothers me when people generalize that it depends on how long you were on and the dose. Fallacy. Many people are on for a short time, only a benzo, and take years and years to heal. I took 1mg or less of k for less than 6 months and I just had my seven year anniversary. I’m still at 80-90%. So my “really” comes from a misinformation frustration. Hypnotic jerks will go too but it took some time.
@@McStorch0 Ah, I'm sorry, I got you. Yeah, you are right. I was careless with that. I think it's perhaps reasonable to say that the longer you are on and higher the dose it is more likely that you will need a long taper/the chances of wd symptoms become more inevitable BUT at the same time, you can still get the whole package even if you were only a small amount for a short time. Glad to hear hypnic jerks went away (or will go away in my case). I hope your healing continues.
Oh yes. I took 0.5 mg of clonazepam for fucking 2 weeks and it has been 2 years and I still cannot even walk or talk well wtf.@@McStorch0
@@McStorch0I've been on Clonazepam for around 40 years. So no, not everyone is on for a short time. I'm very glad he said what he did and that he's sharing. It also depends on which benzo you took. I'm having withdrawals and benzo flu right now. I'm just trying to get through this.
I got derealization while still on a low dose of Valium only a month on it for neck muscle tensions giving me migraines. That prompted me to immidiately want to be off and I did 3 day in hospital voluntary for that with gabapentin and flexeril and it work for me! When I couldn't sleep from muscle issues and restless leg and neck pain was in full swing again flexeril put me back to sleep. So but this is for only 1 month on 5 mg Valium so they know how to handle that ok but long term prob not so well. Oh and I took clonidine for high blood pressure AND to relax which was great.
Crazy that only a month could lead to DPDR episodes, but that just goes to show how insanely powerful these drugs are. I am glad to hear that the medical detox worked for you!
I didn't hear one person talk about increase of exercise and better eating and vitamin and supplements
All of those things are certainly important. I would emphasize light exercise in the beginning. Overexertion can trigger a stress response and in my case, it actually triggers my MCAS.
I’m doing a liquid taper off Ativan.I been tapering for 4 months I can say my body feels different I have more anxiety and I’m not sleeping.Is this normal when you taper off.
I (stupidly) did a more abrupt taper off Ativan and yes I can say this is perfectly normal
I was on ativan 4 months on 1mg.
I stopped it.....and 6th day it started huge withdrawal....It was like I was plugged into the fastest electricity plug up my spine 4 11 weeks. Hell on earth....couldn't sleep.....for 11 weeks.....insomnia from anxiety 100x worse than y I even went on the medication......12th week it was like a bus hit my brain....like a blow to the brain....deep calm.....total polar opposite....now extreme fatigue.
I am 12 weeks off now....and still will have 3 months to build neurons back and strength.
@@MrPeterISABELLA Did you taper off
@shirleypeterson-rp3tq cold Turkey
On 7th day doctor gave me valium to taper off with. 1 per day. If there is hell......lorazapam withdrawal is hell
I was on ativan 4-5 months on 1mg.
I stopped it.....and 6th day it started huge withdrawal....It was like I was plugged into the fastest electricity plug up my spine 4 11 weeks. Hell on earth....couldn't sleep.....for 11 weeks.....insomnia from anxiety 100x worse than y I even went on the medication......12th week it was like a bus hit my brain....like a blow to the brain....deep calm.....total polar opposite....now extreme fatigue, days lasting calm, to then severe light sensitivity, to severe anxiety.....windows free....yet only last a short time..
I am 12 weeks off now....and still will have 3 months to build neurons back and strength.
Coming off lorazapam is a severe trauma.
Yeah the withdrawal was also kind of a delayed fuse for me, too. But once it started, man.... It sounds like you have made it through the thick of it -- it will keep getting better! Coming off lorazepam is indeed severe trauma.
@@windowsNwaves your brilliant to help us all.....I hope I have....I am taking l theanine, melatonin 20mg, cbd Tasmanian 10:10, lions maine, magnesium glycinte, zinc, retinol A 10,000IU, st john's wart by flordis.
The most severe part of this has been the inability to sleep for 11 weeks straight. I swear this drug causes more damage than it does good. It's like a major disability stopping it.
Severe trauma.
Good.work brother WE DO RECOVER !!
Can you please tell me what dose of ativan you were on? Can you tell me how long? And how long the taper was? Thankyou.
2 years and change with a couple months of sporadic diazepam before it. I was taking 1.25mg but some days more than that. had a very abrupt taper down to .5 mg for one month and then .25mg for a month and then off. Very much regret the hasty taper...
@windowsNwaves thankyou. I feel if people write, how much, how long, and what dose people can start to figure out how long there withdrawal will be and how long side effects, this can bring direction and HOPE....thankyou.
@@MrPeterISABELLA everyone is different, but that said, yes, I completely agree that the more we talk about it and the more info we can share, the more helpful it is when it comes to knowing possible outcomes, and yes, having hope!
shit fucking SUCKS! i get no breaks in life.. i've been on 10mg methadone tablets five times per day, and Klonopin, 0.5mg 4 times per day.. for almost a decade now, my life has become hell, i don't know what to do... i feel no emotion. i'm dead inside, my brain is perma damaged, pray for me.
It may feel like it, but it's possible that your brain is not in fact permanently damaged. I know that feeling that you are talking about, though -- no emotion, dead inside. That was the feeling that drove me to get off benzos.
Yes, i don’t think it’s permanent, but if you do decide to stop taking them, try to do it slowly. I was on benzos for over two decades and I’ve been tapering for 3 years and i went from 3mg of klonopin a day to now taking .5 but some days .75 now. I think I will need to decrease in smaller increments to go lower than .5mg.
I was just lucky that I had a doctor that warned me about decreasing too fast. I really didn’t understand how serious it could be. It still makes me angry that people aren’t informed enough about these things
1000% this
No i don't believe in permanent damage I was on effexor amisulpride plus benzo jumped on a lot of them xanax Clonazepam Etizola I'm not losing hope and you shouldn't too ..... But the time frame holy shit that's what freaks me out I'm 7 months off now
@@Default6476 I had an adverse reaction to Effexor in my 20’s that led me to being misdiagnosed as bipolar and put on many medications i never needed for years. I just turned 50.
There was no history of bipolar in my family and the only time in my life that I ever felt what they labeled as mania was when I took Effexor.
When I was 40, that diagnosis was removed and I was diagnosed with adhd and that does run in my family. I was also diagnosed with ptsd and I do believe that diagnosis is correct.
All of the medications I was prescribed for bipolar only made me feel much worse and I had many bad side effects from them.
I do think that our bodies have an incredible capacity for healing, but it does take time.
I think it’s important to be patient and forgiving with ourselves. Many of us have been “beat up” enough by doctors and other health professionals, and maybe even society, so it’s not uncommon to beat ourselves up.
There are so many factors to healing too, and it’s not the same for everyone. I can say for me, that adjusting my diet (mainly quitting soda) and taking vitamins has seemed to help, particularly Vitamin D. It’s certainly not a cure but I appreciate anything that helps.
It’s not easy being patient, but we deserve grace and the ability to nurture ourselves. I’m also grateful to hear the stories of others because I felt gaslit for so long into feeling like it was all my fault. I think we could all learn from each other and at the very least feel supported and know that we are not alone in this.
Would CBD or Cannabis help with the withdrawals and seizures? CBD has been used for epileptic seizures and neurolgical issues.
Cannabis doesn't have severe withdrawal issues and can relieve anxiety symptoms.
Would this help?
Cannabis has been shown to act on the same GABA receptors as benzos so it can be problematic if you are trying to rehabilitate said receptors, which is exactly the goal during wd. That said, some people seem to find significant relief. Seizures is a different story and I won't pretend to know the research there. Anyway, at the end of the day, as you have probably gleaned from poking around on the internet, a lot of us are navigating through this completely in the dark and there is a lot of self-experimentation/figuring out what works for me etc.
You mentioned to stay away from anything that interferes with GABA receptors when your healing . What are things to stay away from ? And if you interfere with your GABA receptors during healing how long does it add on to the recovery journey ?
This is an incredibly good resource on GABAergic substances: www.benzoinfo.com/medications-and-supplements/ As far how much healing will be prolonged, I would say that it's different for everyone. It really depends on how much downregulation has occurred with your GABA receptors. Basically benzodiazepines make your GABA receptors incredibly efficient at binding with GABA, so much so that your brain starts to decommission (downregulate) GABA receptors because it doesn't need as many to do the same job. When you stop taking the benzodiazepines, your brain cannot just snap back into action all the decommissioned GABA receptors. It takes time. If you take something that acts on your GABA receptors (or introduces more GABA to your brain), it could cause your brain to pause its GABA receptor rehab efforts. You just want to give those GABA receptors a wide berth to rehabilitate and hopefully come back as close to 100% as possible. Any curve balls you throw your brain in the meantime will just slow down the process.
@@windowsNwaves Ok thanks a lot that helps. I am recovering from Phenibut, which is a cousin to the benzos but withdrawals are the same and it acts on the GABA receptors. The only prolonged symptoms I’m still having are poor memory (short term and long term) and apathy. I quit about 10 months ago but I was using supplements for sleep that acted on the GABA receptors so it probably delayed healing. I am a little worried about memory , does it ever return to normal ??
I still have memory issues nearly 2 years off. But I have seen improvement in that area. I hope it will keep getting better. Good luck on your journey.
Magnesium helps a lot with the heart palpitations plus going on benzo buddies on line is very reassuring that other people are having the same symptoms as you. Took me 3 yrs. to heal all the way
@@davidfurino2987 at what point did you feel functional despite symptoms
Whenever my Bloodpressure fluctuates I really lose my mind I'm 7 months off and don't know how will I survive like this
@@Default6476 please be patient with yourself. It’s definitely not an easy journey but I do believe it’s worth it. Sometimes we can run and sometimes we can only crawl and that’s ok. I think healing might not be a straight line going up, but one that has ups and downs but still gradually goes up overall. 💜
@@punkroxgirl thanks a lot for the positivity ❤️
@@Default6476 you are very welcome
well said
When does the tinnitus go away?
For me personally, it happened after 6 months
. But everyone is different. How long have you had it?
Comforting that the tinnitus went away for you. I'm almost 6 months off (short term user) so I'm praying it goes away soon...I want to experience silence once again!
@@kritikos8877 hoping that happens for you soon. you will definitely have a newfound appreciation for silence when it happens!
My whole body hurts from coming off this shit 10 mouths off klonopin
I'm so sorry you're dealing with this. Have you had any improvement in those ten months?
@@windowsNwaves I have but it comes and goes in a very bad wave
@@windowsNwaves I have ptsd and they did the same to me as they did to u I have tbi as well half blind
@@Thomas-j2g6x there is probably not much I can say to give you a lift. I hope the waves get shorter and the windows get longer.
Like in another realm
💯
How are you?
Phil Is that you? ❤
yes, it is :) Although, I don't quite look like that now. That was a couple months ago and I was taking efudix, which is like a chemotherapy cream to treat precancerous and cancerous skin cells. The treatment is horrific and makes your face itch and burn, not to mention you look like you have suffered radiation poisoning!
There is no healing
I know where you are coming from. I used to think the same thing... Then I started healing. Didn't think it would happen