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

[[Ta...]]

Yes, I just read your story again and it resonates with me so much. I am able to comprehend more of what you wrote, or certain parts resonate with me at different times.

I'm just very thankful that you wrote your story!

I'm also very glad that I went through the worst of my withdrawal before covid-19 and the economic crises started.

Feeling a little better to cope with it.

Hope you're doing well, MTFan!

[[We...]]

I am 9 monhs 21 days out from C/T from only using 2 boxes of klonopin (58 pills) during 4 months. Your story gives me hope. This tinnitus, dementia & inner shaking makes me so depressed. I can't stand being like this much longer. I need healing I beg for healing. You are lucky to have healed.

[[Sh...]]

Maybe you’re reading this and wondering if you’re going to make it. Maybe you’re looking for hope that despite your history or the severity of your wd symptoms, that it can get better. I have good news and bad news. The good news is absolutely this gets better in time…more time than is reasonable but it will happen. The bad news is that it can totally suck until then and your pre-existing issues will probably stay with you.

 

It's been 4 years and almost 3 months. I’m one of those long-term, high dose, polydrugged people. I took combinations and doses that would put most people into a coma but my body just shrugged it off. It wasn’t until the drugs stopped working that the reality hit me that I’d have to get off. It was a long, ugly, bumpy process with a ton of mistakes, cold turkeys and rapid tapers along the way. Finding BB helped save my life because I really didn’t understand what was wrong-that I wasn’t dying of some disease but that if I could dig deep and choose to carry on, I would get better, but the drugs had to go. That became my mission but it took several years to get off all of them since when I started I was taking more than ten different drugs every day plus my as needed drugs.

 

I’ve gone from a shaking, sweating woman who lost 30 lbs. in a few months (nausea, vomiting, diarrhea), lost in a swirl of cognitive struggles that resembled dementia and a level of constant, severe, anxiety that, despite having PTSD, I’d only ever experienced in a two-engine plane when one engine died. And absolutely black depression. Every day I wanted to die for around two years until it started lifting in fits and starts.

 

But nothing was like the insomnia. I had degrees of insomnia that I’d never heard of and thought would kill you. For a couple of years, I only slept every other night (for a few hours and only on the nights I took amitriptyline). Then when I got off all drugs I’d go days, as long as two weeks, with zero awareness of any sleep. Mostly I just read and never got sleepy. And cried.

 

But ever so gradually sleep returned. Light, short and broken with frequent zero nights but still, what an amazing gift! I decided that if I could just get to the point of sleeping two hours I’d celebrate and not be bitter. It took months but two hours turned into four. Many months later I got up to 4 or 5 light sleep but it was manageable.

 

Now what’s left I attribute to CFS and IBS. With some exceptions, I sleep 6-7 hours per night and get up 4-5 times. I’ve had insomnia off and on since I was 12 so of course I’m still going to have it now. My IBS is better than it was when I took all of those drugs. The only clear wd symptom I have is paresthesias-a wet, tingly feeling on my face and occasional warm, not quite burning skin.

 

How did I survive? I kept reminding myself that I didn’t have to make it through the next month, year, whatever, I only had to make it through this day, this hour. I tried to break everything up into tiny, manageable chunks. Even when, especially when, things were exceptionally bad, I practiced gratitude, striving, as if my life depended on it, to find things to be thankful for: that my husband was able to sleep (one of us was bad enough), that I had a roof over my head, that I was able to prepare and hold down a meal, that I wasn’t in the zombie apocalypse, etc. Humor was a huge coping strategy. To the best of my ability I tried to focus on others. I reached this point where I understood it wasn’t possible for me to feel better so maybe I could make other’s lives better instead.  I looked for small ways to brighten other’s days with a kind word or a card or just by letting them know I saw them, that I cared. We all hunger for that. My faith was a life preserver and God was a companion that I couldn’t feel for a very long time until I’d healed more. I had some friends I reached out to but I worked hard not to focus on myself and my needs. It’s easy to get on the ALL WITHDRAWAL ALL THE TIME channel. It makes us boring, selfish and we miss so much. Some of that is completely normal but I think we also have to fight it. If we want good friends we have to be good friends. If you’re vomiting and running to the bathroom, or your head is pounding from not sleeping, maybe you can’t cook your friend dinner but you can text them and ask them about their day. Not only does it help them bur it provides you with distraction.

 

I’ve been reading a book, “How to be sick” that has strategies for coping with chronic illness. One of the tools is to cultivate joy in the joy of others. When I could drag my focus from my own sorry life and be happy for someone else who was able to sleep or who had the courage to leave the house or who went on vacation, I saw how it helped me feel better. Cultivating this, and gratitude takes practice and you start with not having the *emotion* at all. It’s just practice. But bit by bit, if you work at it, you’ll find yourself experiencing far more joy and gratitude than you thought imaginable.

 

Some days all I could do was hold on and try not to stay alive. Nothing got accomplished and no one else was helped but just making it through the day was pretty miraculous.

 

I don’t know your story. I know it’s probably pretty horrible and you doubt how much of this you can take. Maybe you often think of giving up. I understand. It feels devastating to go through this. I’m going to ask you to do the bravest, most badass thing possible and just fight through this one freaking hour and day at a time until one day you realize you’ve made it far enough. Whoever you are out there, know that I believe in you. That out of the ashes of this devastation there’s a phoenix waiting to be born and that’s you.

 

MT

[[MT...]]

Hi everyone.

 

I'll be at 6 years in December. I remain thankful for having survived wd and I hold all of you close in my heart. I remember that feeling that I couldn't take one more day, one more hour of it. Just having the courage to face each day (with or without sleep) took everything I had and sometimes all I could do was be a puddle. You may have your puddle time too, but it won't be the end of the story. Slowly but surely your bodies are healing and one day you will notice you feel better. Friends, be kind to yourself as you fight these battles. You'll get there. As the Little Engine that Could said, "I think I can, I think I can, I think I can."

 

MT

[[Sh...]]

Sorry reposted ur story meant to post it to another thread of someone having a tough time using u as inspiration x so happy for u! Amazing

[[Ta...]]

Another good mantra to recite over and over again in our heads is: I AM healing, I AM healing, I AM healing.

Our brains hear and interpret the messages we are sending it so I am going to try and send a positive one at least!

And all of you are healing, too, one little cell at a time.

[[Sh...]]

Bump

[[Ta...]]

I am having a very difficult time with sleep and am needing emotional support, I guess. I can fall asleep okay now but I am finding that I wake up at 3:45-4 am every morning and I simply cannot fall back asleep. I try YouTube meditations, Calm sleep stories, our silence, occasionally breathing exercises (if I can remember the count), and it just doesn't work. I feel sluggish, cloudy, headachey all the time. I know I have posted some wonderful advice on sleeping habits to others on BB and beyond but it seems nothing helps.

I am now 39 months of clonazepam and just really sad right now.

 

I am going in for 2 ketamine infusion treatments at the end of this week (its been two years since my last one) and I am hoping this helps lift depression and hopefully improve my sleep.

[[MT...]]

Hi Tater.

 

It's so incredibly hard to remain patient with the ridiculously long amount of time it takes for some of us to heal. I'm coming up on 6 years and it's only in the past few months that I can count on getting 7 (or slightly more) hours of sleep nightly with occasional exceptions. I do wake up several times but that's probably my age and hormones (58 y/o).

 

I think part of the shift that's useful to make is not to evaluate coping strategies based on whether they make you drowsy enough to fall asleep but rather on whether they help you relax a bit and ride the wave of discomfort/misery/insomnia with a bit more ease. I think of it as developing a more peaceful relationship with insomnia rather than framing it as this constant, life-wrecking battle. If you relax enough to get your mind off of lots of panicky thoughts and keep putting one foot in front of the other, count that as a win. If not, maybe next time it will go easier.

 

You've got my compassion and respect for staying in the fight when it goes on so long. Let me/us know how the ketamine goes for you.

 

MT

[[Sh...]]

I’m going thru 1 night no sleep next night 1-2 hrs at the moment.feel so sick x

[[MT...]]

Shayna, that totally stinks. Of course you feel sick. I hope it eases up soon :smitten:

[[Sh...]]

Thanku xx

[[Ta...]]

Hi Tater.

 

It's so incredibly hard to remain patient with the ridiculously long amount of time it takes for some of us to heal. I'm coming up on 6 years and it's only in the past few months that I can count on getting 7 (or slightly more) hours of sleep nightly with occasional exceptions. I do wake up several times but that's probably my age and hormones (58 y/o).

 

I think part of the shift that's useful to make is not to evaluate coping strategies based on whether they make you drowsy enough to fall asleep but rather on whether they help you relax a bit and ride the wave of discomfort/misery/insomnia with a bit more ease. I think of it as developing a more peaceful relationship with insomnia rather than framing it as this constant, life-wrecking battle. If you relax enough to get your mind off of lots of panicky thoughts and keep putting one foot in front of the other, count that as a win. If not, maybe next time it will go easier.

 

You've got my compassion and respect for staying in the fight when it goes on so long. Let me/us know how the ketamine goes for you.

 

MT

 

Thank you, MTFan. I agree its best to not measure these coping strategies are whether or not I fall asleep or not but measure them by the degree that help me relax. I will say that all these strategies I have developed have done wonders for calming my mental state. So thats definitely a WIN!

 

The sleep will come. My sleep has improved so much over the last year alone. My first year I didn't sleep barely a wink! The next year I slept 2-3 hours at a time and now I can get 4 solid hours and sometimes more. It is going in the right direction, thankfully.

We definitely develop patience and long-term thinking as a byproduct of this, don't we?

 

Shayna, I'm thinking of you and so sorry you're suffering. I hope you can get some relief soon. When you don't sleep everything feels awful. I had to cancel seeing a friend on Sunday because I didn't sleep the night before and felt horrible. Its been so long without seeing friends.

[[Sh...]]

Tater I’m so sorry how long it’s taken u x how do u stay so strong? 2 hrs for the first year? I don’t know what to say x

[[MT...]]

As hard as these stories are of some insomniac benzo survivors, I think it's helpful for others to hear that it's possible to survive, and even have some life, while getting very little sleep. All of our lives we hear how terrible/dangerous it is not to sleep that it sets us up to have super catastrophic thinking around insomnia.

 

When I was in my years of lots of 0-4 hour nights, it was reading about the others who had the same experience, not an easy time, that gave me the courage to keep on going. So share your stories, Tater and Shayna, and have hope for the future.

[[Sh...]]

It absolutely helps me. Sometimes u feel like some kind of freak and that’s what makes us feel worse to hear that other people have it just as bad? I am in tears knowing that u are here too! U are so brave and I hope I can dig deep and be as strong as u in this incredibly difficult time. U are amazing both of u x

[Guest [fl...]]

You are an inspiration!

[[Ta...]]

It is extremely validating and fortifying to know that other people are going through what we are going through as well. And it is even more miraculous to hear of someone actually improving or recovering. This offers so much hope- like a hand outstretched in the dark to us in solidarity.

 

I popped in to report that Monday I slept only three hours but last night I slept 7! An actual 7 hours! It really is so hit or miss and non-linear. Hopefully, I can keep momentum going and continue to get more sleep but I dont want to subconsciously screw myself with expectation.

 

Shayna, I have no idea how I persevered except through stubbornness and patience. It helped that I didn't have to work but I really led a non-functioning life. I may have looked okay on the outside but on the inside I was a total mess. My cognitive-impairment was pure dementia levels. I still suffer with communication, memory and problem-solving but am vastly improved from a 2 years ago.

 

I think now I feel some improvement that when I get an onslaught of symptoms it actually feels so much worse. Like if I get 5 hours of sleep one night and then get only 2-3 hours I feel like absolute hell, as compared to when I was regularly only getting 2-3 hours of sleep. Weird.

[[Sh...]]

Tater that’s such great news 7 hours!!!!! Amazing x I hope it continues. I know how difficult it must have been for u, I’m not working atm either and can’t imagine on the hard days how I could do it, I can  nearly look after myself. My dr told me yesterday this ur new normal so get used to it. So easy for someone who doesn’t experience it to say. It really does help to hear people are healing from this so there is a chance for me too. Thanku so much for telling ur story too tater x it means so much x

[[MT...]]

Tater, that's wonderful that you had a 7 hour night! Those are the times to cherish and remember during, and after, the more difficult nights. I too have noticed that I suffer more when I lose significant sleep compared to when it was just routine. It hits my body harder but fortunately a bad night now usually means 5-6 hours and doesn't happen that often. When it does there's usually a reason like getting bad news in the evening or being sick.

[[Ta...]]

Thanks Shayna and MTFan! The decent sleep has continued to the last two nights as well. 6 hours last night. The funny thing is my cognitive impairment and eye strain has worsened, which happens on nights I get better sleep. So weird, huh? I don't get it because I would hope it would help clear up those symptoms but nope!

 

Shayna, what a shame that your doctor said to get used to this new normal. He has zero idea how disheartening that is to hear from a medical professional in charge of looking after you! Kind supportive words mean so much coming from a doctor- is it too much to ask?

 

Thankfully, there are lots of recovering benzo warriors out here to tell the story, myself included. I had no idea how to taper and I essentially cold-turkeyed myself by cutting the pill down too fast. I didn't reinstate out of stubbornness and worsening dementia-type symptoms (didn't know what I was doing) and I really went through hell. Crazy hell for a long time. I thought I was going to have to move into a nursing home. But patience and self-care (as much as I could muster) and finally finding BenzoBuddies (wish I found everyone sooner!) helped me persevere.

 

Bit by bit, day by day, month by month I have gotten better. I still feel like an alien in the world. I still feel like I don't belong anywhere because I'm in my 40's with no kids, no career, estranged from family and old friends due to moving across the country a few times, and with my cognitive impairment it makes meeting new people very difficult. I go to speak and I get some strange looks as if people are trying to figure out what is wrong with me. I speak in shorter sentences and sometimes speak like a high-pitched little girl because of low self-esteem and the cog-fog. Hard to find good vocabulary. I feel stuck in time but also getting older. Psych meds did this to me and the benzo damaged me worse than all of the others. The benzo is next-level brain damage.

 

I have a lot of worries about how many more of us are out there. And with prescriptions of benzos going up 35% in the last 6-7 months alone, and doctors unaware/ignorant of the dangers of benzos,  I fear there will be a lot more of us in the coming months and years.

[[Sh...]]

I’m so happy ur sleep is improving that’s wonderful x it is so frustrating that the drs just ignore what has happened to us thanks to the drugs they prescribe the statistics are frightening and hopefully people like Jordan Peterson will continue to spread the word.

And when it comes to people’s reaction to you, that just shows there is not a lot of compassion which is their problem, not urs x

My son has autism so I know the look u are talking about. I’d love to know what a “normal person” looks like these days anyway.

It sounds like some healing is coming ur way now. I hope u enjoy much more of that tater 

[[Ta...]]

Thank you, Shayna. Of courses I am reading this my symptoms are acting up badly again today because last night I only slept three hours. I feel pretty useless today. Watching TV and wishing I felt better. I read something about DNR therapy for brain issues and trauma and I am curious about it for us. It requires a 14 hour training video and then one hour a day for 6 months and maybe some support group activity and honestly the whole thing seems so exhausting but if it worked, it would all be worth it, right?

Hope you're doing okay and taking good care of yourself.

[[Sh...]]

Hey tater yes it’s worth a try! Sorry sleep dropped back for u x mine has been better last 2 nights, 3 and 4 hours. So greatful for this! Beats zero!

[[Th...]]

MT,

 

I don't know why I didn't see this until now?

 

Congratulations....I knew you had healed enough to get your "life back."

 

You were always an inspiration to me and greatly helped me through my healing and recovery journey.

 

Your thoughtful, heartfelt, genuine and caring posts really made a difference for me. 

 

I always thought if MT can go that long without sleep, I can get through my sleep issues too!!!

 

Thanks for always being that "badass" but super kind, helpful and grateful Benzo Warrior!