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Phoenix rising: long-term user, extreme insomniac, emerges from the ashes


[MT...]

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Tatertot,

 

I complain about my cognitive issues but they're mild enough that I can work in my job in health care two days a week and I'm always studying and learning stuff. It just takes me longer and material doesn't stick very well. It takes a lot of repetition. I've pretty much given up on memorization. I used to try to memorize Bible passages and it would take me a couple of weeks and I'd still mess up a 1-2 sentence passage. So frustrating! But there are worse things!

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Yes, you are right, there are worse things. It just is very hard to process the comparison to how we used to be mentally and to how we are now.

Thankfully, we have google to look things up and calculators for math.

Wish I didn't have to use those tools, but such is the current situation.

Ironic, right, how when I had the capacity for memorization I used those tools, when I didn't need to, but now I NEED them.

 

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  • 1 month later...
i need words of encouragement. i started down this path because of a stress induced bought of insomnia. now i am not sleeping for weeks. i dont know what to do. i dont think i can go on like this for much longer. i perhaps went off things too fast and everything was mis managed. i dont know. i cant find any doctors who know about ambien tolerance, withdrawl, temazapam protracted withdrrawl...now im on a low dose of remeron again which isnt even helping. i feel like im not going to make it. please help.
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You made me cry at work!!  :laugh: Thank you for this. Gratitude is huge and so is giving others hope. Positive emotions override the negative and your brain heals more because of it.

 

This story fills me up with the hope that good people do exist in a world that can often seem so dark, especially for benzo sufferers.

 

God bless you...thank you for this message.

 

na-  :angel:

 

 

 

 

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Thank you MT!  :)

 

What an amazing post!  I start a true taper today from Xanax and I am as prepared as I can be.    ;)  I've been reading through the posts and this was such a great note to keep me motivated and to remind me that we DO HEAL!  :thumbsup:

 

Amazing what you've been through and to see such a positive frame of mind. I know that will help me so much as I move forward.  I've been suffering for years without being aware of the tolerance and I'm so ready to get this started and on my way to healing!

 

Thank you again for sharing your experiences and spreading hope!

Mrs. No

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i need words of encouragement. i started down this path because of a stress induced bought of insomnia. now i am not sleeping for weeks. i dont know what to do. i dont think i can go on like this for much longer. i perhaps went off things too fast and everything was mis managed. i dont know. i cant find any doctors who know about ambien tolerance, withdrawl, temazapam protracted withdrrawl...now im on a low dose of remeron again which isnt even helping. i feel like im not going to make it. please help.

 

I remember that feeling-that I wouldn't make it. Unfortunately, it can become a mantra that we repeat over and over: "I can't do it. I'm not going to make it." Even, "I just want to die." When we do this we're essentially programming our computer with these messages. I understand, these messages are strong and loud but they need something to counter them.

 

I recommend that you develop some new words to live by, something like, "This is really tough but I can get through this one day at a time" or "I have the strength to do this." Strength often doesn't feel strong but is the determination to keep going. As silly as Galaxy Quest was, I often had to repeat to myself, "Never give up, never surrender."

 

In reality, you CAN survive this. Going without sleep is definitely torture but it's not permanent. Your body and mind needs rest. You can survive on rest even without sleep. That's why things like doing the guided body scan or any form of meditation is helpful. You can meditate all night long. When sleep deprived your mind will be all over the place but with someone talking you through this you can do it. Here are some resources:

 

https://www.mindfulness-solution.com/DownloadMeditations.html

 

http://sittingtogether.com/meditations.php

 

Listening to books on audio or nonstimulating podcasts at night can also provide rest. I listen to Lightspeed or Clarkesworld for free science-fiction and fantasy. I'm sure there are other genres available. It gives your brain something to do other than obsess about sleep. Obsessing about sleep is a sleep killer. You have to start programming yourself with the belief that, regardless of the amount of sleep you did or didn't get, you can get through this next day, even if it's one hour at a time.

 

I can't emphasize enough the importance of looking for even teeny, tiny things that are going well, that you can be grateful for. Perhaps you have a roof over your head so that while not sleeping, at least you can have some level of comfort and safety. Are there trees or flowers near you? When did you last watch a sunrise or sunset? Can you go out and hear the laughter of a small child, or even an adult? Do you have clean water? Were you able to dress yourself today?

 

You absolutely can make it through this. Time is distorted and this feels like forever, but it isn't and it won't be. Take comfort in the fact that there are thousands of people all over the planet going through this. You may not know them, most aren't on BB, but you aren't alone. On BB a bunch of us have been through this and come to the other side. That was once a fictional land of unicorns and rainbows but it ultimately happened. My life isn't perfect because of my pre-existing health issues, but benzo hell is behind me. One day it will be for you as well. And you will be so proud of yourself for being such a bad ass survivor.

 

MT

 

 

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  • 2 months later...

How are you doing MT? Your recovery has been really amazing. People could not do much better than follow your advice. I think you provide a great template for everyone. Do you still have symptoms? How is your functionality relative to the last few decades?

 

Hope you're doing well and congrats :)

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I'm thankful to read a success story from someone else who was severely poly-drugged.

I definitely identify with your symptoms.

I look forward to the day I can write a success story of my own.

Thank you for taking the time to write this, MT!

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Data guy and TaterTot,

 

Thank you for the positive comments. This is a long road and it can feel like forever, but you, and everyone else, will see yourself progress as long as you stay in the fight. Your success stories will be such a gift to others.

 

My functionality is dramatically different from the past two decades. Even though I still have CFS, which bites, I exercise around 4-5 hours a week, can hike 5-9 miles (I've done more but it leaves me destroyed for a week or two), and am more active with household chores  and social interaction than I've ever been. I used to spend the vast majority of my time lying down and now I'm up all day some days and the vast majority of the day the rest. It's still not what a "normal" would be doing without CFS but outstanding for me.

 

I've been working the program from Unlearn Your Pain/Unlearn Your Anxiety and Depression (those are two different books and he has a website: https://www.unlearnyourpain.com/) because I believe that following it I can further decrease my CFS symptoms, and maybe even get over it since others have.

 

My only remaining clear wd symptom is a mild facial paresthesia-it feels wet and tingly. My sleep isn't great-I get around 6 hours, sometimes 7, most nights with 3-4 wakeups. However, it's not that much different from other women my age and sleep issues are common with CFS and in my family so this may be 100% unrelated to wd. I first had insomnia when I was 11. Still, considering all of the meds and 27 years of continuously using sedating medications at night, even if it is related to the meds, it's not a bad outcome. I can live with this and I feel grateful every day for the sleep I do get. When I have a bad night I consider myself a fellow member of the human race. Once I opened up my ears I discovered how many normals struggle with sleep. Those of us in recovery don't have a monopoly on suffering but it's easy to get in that mindset.

 

I'll be 5 years off on Saturday and I'm excited about that. That felt impossible for a long time but I made myself press on and try to believe.

 

Be kind to yourselves. And others.

 

MT

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Congratulations MTfan :thumbsup:  Thank you for sharing your success story.  You are such an inspiration!

 

I am dealing with pre-existing health conditions, too but, feel that benzo symptoms are mainly behind me now .  I would like to share a success story soon in hopes that it may help others.

 

Burnedout

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Congratulations MTfan :thumbsup:  Thank you for sharing your success story.  You are such an inspiration!

 

I am dealing with pre-existing health conditions, too but, feel that benzo symptoms are mainly behind me now .  I would like to share a success story soon in hopes that it may help others.

 

Burnedout

 

I look forward to reading your success story. It's so hard to believe it will happen when you're still in the thick of it. Hope can me a dark, slippery critter. But it's there, waiting and it's all the sweeter for the time it felt absent.

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Data guy and TaterTot,

 

Thank you for the positive comments. This is a long road and it can feel like forever, but you, and everyone else, will see yourself progress as long as you stay in the fight. Your success stories will be such a gift to others.

 

My functionality is dramatically different from the past two decades. Even though I still have CFS, which bites, I exercise around 4-5 hours a week, can hike 5-9 miles (I've done more but it leaves me destroyed for a week or two), and am more active with household chores  and social interaction than I've ever been. I used to spend the vast majority of my time lying down and now I'm up all day some days and the vast majority of the day the rest. It's still not what a "normal" would be doing without CFS but outstanding for me.

 

I've been working the program from Unlearn Your Pain/Unlearn Your Anxiety and Depression (those are two different books and he has a website: https://www.unlearnyourpain.com/) because I believe that following it I can further decrease my CFS symptoms, and maybe even get over it since others have.

 

My only remaining clear wd symptom is a mild facial paresthesia-it feels wet and tingly. My sleep isn't great-I get around 6 hours, sometimes 7, most nights with 3-4 wakeups. However, it's not that much different from other women my age and sleep issues are common with CFS and in my family so this may be 100% unrelated to wd. I first had insomnia when I was 11. Still, considering all of the meds and 27 years of continuously using sedating medications at night, even if it is related to the meds, it's not a bad outcome. I can live with this and I feel grateful every day for the sleep I do get. When I have a bad night I consider myself a fellow member of the human race. Once I opened up my ears I discovered how many normals struggle with sleep. Those of us in recovery don't have a monopoly on suffering but it's easy to get in that mindset.

 

I'll be 5 years off on Saturday and I'm excited about that. That felt impossible for a long time but I made myself press on and try to believe.

 

Be kind to yourselves. And others.

 

MT

 

Thanks for the response MT. Looking at all the drugs you were prescribed, I'm still pretty astounded that you recovered in the time you did. I think maybe you have healing superpowers and that the CFS is merely an annoying hitchhiker that comes along for the ride :)

 

Happy anniversary in advance  :smitten:

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Oh how I love this post and this thread. I am in a tsunami, not a wave....and the advice to take this an hour at a time is spot on. Survival is far from my mind, but this minute, this hour, is my battleground. And I absolutely will incorporate cultivating joy in myself by nurturing and vicariously celebrating the joyful things my loved ones are doing. Thank you.
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What are your cfs symptoms that are still present? I’m 20 months off and I’m afraid I have cfs not wd. I took afivan for anxiety. Now being off I have seneroy issues, full fuzzy heavy head. Overstimulation VERay easy. Fatigue. Hard to tell what’s what. I know my anxiety did not feel this way before I took Ativan. I can’t even handle taking to people if they come to the door it makes me head all heavy and fuzzy. Can’t be out of my house linger than an hour else it’s too much and I have to lay in a dark quiet room. From the time I wake up until I go to bed everyday no change same crap differnt day.
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H101,

 

The symptoms you describe sound to me like a really lousy case of wd. Sometimes this takes a crazy long time to improve. If you can gradually approach the activities that cause symptoms, while reassuring yourself, deep breathing, etc. it can help you move forward. The more you avoid them the more it amplifies the way the nervous system responds which creates the outcome of symptoms.

 

Here's a CFS symptom list:https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

 

I have most of that except the sore throat and swollen lymph nodes. That was more common 20 some years ago when I was first diagnosed. It's the mildest it has ever been since forcing myself to eat better, exercise and practice relaxation skills.

 

I hope you see some improvement soon. I know I was still in really rough shape at 20 months.

 

MT

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I am in bad wave of dementia-like symptoms.

Wondering about recovery from these symptoms?

Can't write much here but wondering if they improved much, or how much improvement took place?

Still suffering from any of the cognitive deficit symptoms?

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Tatertot,

 

I remember how terrified I was of my dementia like symptoms. I was pretty convinced it was early onset dementia and I'd never be the same, that it would all just be a steady decline. My brain is a lot better now. I have some issues with retention of memory but that's not inconsistent with my lifelong issues with ADD/PTSD and other people in my family. It's just not my strong suit. Still, I'm able to study and learn theoretical material with some effort. I use a lot of reminders and write stuff down to prompt myself.

 

As time has passed I've come to believe that I had all of the memory issues before but when I was taking benzos I was anesthetized from embarrassment about what I couldn't remember. It just seemed normal to me. Being off of them means being more perceptive, more aware, and feeling more but it's so worth it because it means feeling more of the good stuff too.

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Tatertot,

 

I remember how terrified I was of my dementia like symptoms. I was pretty convinced it was early onset dementia and I'd never be the same, that it would all just be a steady decline. My brain is a lot better now. I have some issues with retention of memory but that's not inconsistent with my lifelong issues with ADD/PTSD and other people in my family. It's just not my strong suit. Still, I'm able to study and learn theoretical material with some effort. I use a lot of reminders and write stuff down to prompt myself.

 

As time has passed I've come to believe that I had all of the memory issues before but when I was taking benzos I was anesthetized from embarrassment about what I couldn't remember. It just seemed normal to me. Being off of them means being more perceptive, more aware, and feeling more but it's so worth it because it means feeling more of the good stuff too.

 

Thanks MT. My heart feels some consolation reading your reply. I am glad that you are able to learn theoretical material, albeit with some effort, because that requires considerable cognitive effort and retention.

Your ideas of taking notes is good practice.

 

This experience also has me questioning how good my memory was before... and I realize that my memory wasn't that great before, either. When I listen to people speak about their childhood experiences, conversations and events with friends, I'm embarrassed and sad that I don't have much to contribute of my own. I have never been able to recall a conversation to save my life. I could sometimes remember gists of conversations.

 

The only time I can remember gists of conversations is also when something negative happened to me in it. I remember the negative stuff because that is a function of our human evolution, to remember the negative for our future survival. It could also be the function of a depressed brain.

So, yeah, my memory was never the great. I am sad that it was never a strong suit, and wish I had a great memory like other people do.

But that was never me. However, now I am horrified that I lost the little that I had.

I also have found that my brain is worse in the morning but it tends to get a tad more lucid as the day progresses.

 

I have been fearful of early onset dementia (due to substances) since a month after I jumped and all this craziness began.

But I gotta keep the faith.

 

I hope to get to the point where I can process all the emotions and feelings of failure, of life lost, and accepting what talent I still have available to me. I was anesthetized for twenty years, too.

I want to feel better enough to enjoy the rest of what time get on this planet.

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  • 7 months later...
You are without a doubt a f*cking hero. Thanku for sharing your story. On a day I truly feel like I can’t go on, this has helped me find some fight. Thank you MT :smitten:
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You are without a doubt a f*cking hero. Thanku for sharing your story. On a day I truly feel like I can’t go on, this has helped me find some fight. Thank you MT :smitten:

 

Shayna, I'm so thankful you feel some fight again. I had many, many days and nights when I felt I couldn't go on. People on BB helped get me through those times and believe in a better future. Keep fighting the good fight...even when it's more like a whimper and crawling across the floor, it's a worthwhile fight.

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Congrats MT fan...I just saw this now.  You wrote this when I was on a "leave of absence" from BB that was more or less imposed by at least one moderator.

 

You are always so positive, kind, compassionate and caring.  I have always appreciated your posts, wisdom and humor!

 

Keep up the great work of supporting people on this forum and in life!

 

 

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