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


[MT...]

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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

 

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WOW!!!!! Wonderful!!!!!  :thumbsup: :thumbsup: :thumbsup: :thumbsup:

 

I'm so, so happy for you!!!!! I remember reading your posts about the insomnia, and then you disappeared but came back recently. You stuck with it. Incredible.

 

THANK YOU ever so much for posting your success story. I'm sure you will help many members who are suffering from insomnia. I can't imagine what it would be like to go through something so terrible, but I have my own symptoms which are bad, too.

 

I have Toni Bernhard's book How to Live Well with Chronic Pain and Illness, and it calmed me down just knowing that others are experiencing chronic illness that doctors have little knowledge of. She offers very sound tips, and gratitude is so important. I'm incorporating that into my life, and it has definitely helped.

 

ENJOY THE REST OF YOUR LIFE, and CONGRATULATIONS for a well-fought battle with the demon benzo!!!!! I'm so happy that you stayed with it. Remarkable. :smitten:

 

 

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Thank you for sharing! Your point about focusing on others struck a chord with me ... so glad that you are recovered!
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Awesome, MT! 

 

I know you had a very rough go of it for a long, long time, and I always enjoyed your posts and admired and respected the (outwardly, lol) calm manner in which you appeared to be dealing with your lot.  Terrific success story, full of wisdom, maturity, a dash of old fashioned common sense, and a generous dollop of kick-butt badass! ;)

 

Very, very happy for you, thanks for taking the time, and I wish you only continued good health and happiness!

:smitten:

 

 

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...your pre-existing issues will probably stay with you.

 

So I’ll still have diabetes? Shit.

 

Hahahahaha I’ll still be bald

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...your pre-existing issues will probably stay with you.

 

So I’ll still have diabetes? Shit.

 

Hahahahaha I’ll still be bald

 

And I still can't dance or play the piano. I feel so cheated ;D

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Love your story, inspiring and uplifting. Thank you so much to come back to let us know you made it! Im so happy for you!

Can I ask do you take any supplements?

May your life continue with good health and lots of happiness. :smitten:

Vica

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WOW!  Congratulations, MT!!  You give me tons of hope that my sleep will eventually return.  Did you take take supplements for sleep or just tough it out with nothing?  I'm 4.5 months out and the insomnia, pain/tension from not sleeping, anxiety and depression still linger.  I think the change of seasons will help get me outside and progress.  I only took the meds for a year before I tapered.  I managed to travel this month to Florida for a week.  It was tough, but I did it and am happy that I did.  Gotta keep living.

 

Wishing you all the best life has to offer!  Enjoy!!

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Love your story, inspiring and uplifting. Thank you so much to come back to let us know you made it! Im so happy for you!

Can I ask do you take any supplements?

May your life continue with good health and lots of happiness. :smitten:

Vica

 

Hi Vica.

 

I didn't find supplements at all helpful when I was in the thick of it, especially for sleep-absolutely useless despite trying just about everything out there. So much wasted money. Peppermint tea helped some with nausea. Now I take a variety of vitamins and supplements that are all supposed to help with CFS and help prevent dementia since I have multiple risk factors. The only supplement I can identify as having been clearly helpful is D-Ribose. It addresses energy issues in the power center of the cell (mitochondria) and is well researched. My energy is a bit better on it.

 

Even though I still have CFS, I'm able to work two days a week, exercise around 4 hours a week and take periodic hikes. When I started all of this I had to use handicapped parking and spent almost all of my not work hours lying down. I also used to have a headache or migraine every single day and now it's exceptionally rare. I believe all of those drugs were making my conditions worse. While I had hoped the CFS would go away, I'm thankful for the improvement.

 

Hang in there!

 

MT

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...your pre-existing issues will probably stay with you.

 

So I’ll still have diabetes? Shit.

 

Hahahahaha I’ll still be bald

 

And I still can't dance or play the piano. I feel so cheated ;D

Hey MT!!!  :hug: Fantastic to see you writing in this section !!!  :highfive:  :highfive::yippee: :yippee:  :thumbsup: All the 'Well I'll still have'' or still can't'' posts reminds me of my friend who was a miracle after being in a really bad car crash in coma for ages brain damaged, not expected to live but survived and thrived, and is back to pissing off the same people he did  before his accident  ;D

 

When he was still under going  counselling with a shrink the shrink asked him what was up as he was very depressed during one particular session to which he replied ''I can't win at playing cards, I keep losing no matter what card game it is!!"  So'' replied the shrink'' You were a bit of a card shark before the accident were you?'' 'No'' replied my friend 'I was fkn shit at cards then as well!!  :laugh: :laugh: :laugh: Many Congrats I am SOOOO pleased for you, and may your healing keep continuing the best is yet to come  :thumbsup:

 

Love Nova xxxx  :smitten: :smitten: :smitten:

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Congratulations MT on your strength and attitude to make it! Wow, you were on alot of drugs, unfortunately doctor's answers to most problems is to prescribe drugs, even when many of the initial problems came from drugs. Thanks for your story and prayers for your future!

 

B strong

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Thank you for your story! Can you speak more to the black depression that you had that started to lift around two years?

 

Did you basically feel fear about everything? Did random thoughts/triggers make you feel dark thoughts and take you to bad places mentally?

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Thank you all for the kind words and supportive comments. BB is a great place for helping, supporting and cheering each other on.

 

Boombox,

 

I'd had depression and anxiety off and on prior to wd but it was constant once I started getting off of drugs. For about 18 months I went off and on different benzos and other drugs. That's when the absolutely black, aching to die, depression and anxiety/panic/terror started. After I jumped off the final benzo it remained constant for another 6-12 months then gradually lightened. I was in such abject misery and saw no relief in sight so every day was hard to face. I was afraid my brain was permanently damaged and I had really enjoyed my brain before this. So my baseline was very depressed and it took nothing to trigger something even deeper to the point of being paralyzed. There were times I was crying so much my eyes were swollen. I told people at work I was having severe allergies. Now I have the least depression I've had in almost 30 years. It still happens but it's typically just a day or so. I had one of several weeks but it was related to the PTSD (from childhood, not wd) and I'd been triggered. I took all of those stupid drugs for depression, anxiety, insomnia, ADD, migraines, fibro pain and tachycardia and every single one of those things (except sleep is a bit of a toss up) is dramatically better off of them. Unrefreshing sleep is a symptom of CFS though so no surprise there.

 

I take it you're dealing with a lot of depression and anxiety? How are you holding up? It's incredibly difficult to bear.

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I am still dealing with depression and anxiety at nearly a year off, yes. It sort of just alternates between the two states. Some days I wake up super early with the physical sensation of anxiety in my stomach like extreme butterflies and then at work that day I get physical sensations in my chest, which I think it costochondritis. Then today I've just been depressed most of the day and it started with my shower which was non-stop worry about the future. On top of that, I am dealing with intrusive thoughts, apathy about everything, and the feeling like my mind could slip away at any time. It just goes on and on and then I start blaming things around me like my wife, my job, etc. I don't know what to do anymore. I guess just keep living.
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Oh MT.

 

I’m crying.

 

This is one I was waiting for.

 

You helped so many people here with your gratitude attitude, and your persistent calm in the face of unrelenting insomnia.

 

I can’t go on. I’ll go on.

 

Thank you always.

 

JKS

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I am still dealing with depression and anxiety at nearly a year off, yes. It sort of just alternates between the two states. Some days I wake up super early with the physical sensation of anxiety in my stomach like extreme butterflies and then at work that day I get physical sensations in my chest, which I think it costochondritis. Then today I've just been depressed most of the day and it started with my shower which was non-stop worry about the future. On top of that, I am dealing with intrusive thoughts, apathy about everything, and the feeling like my mind could slip away at any time. It just goes on and on and then I start blaming things around me like my wife, my job, etc. I don't know what to do anymore. I guess just keep living.

 

That intense depression and anxiety is a heavy load. It can be hard to believe it will lift but that's the brain's trash talk. Your brain and body is working so hard right now to get better, to heal. There's all of this behind the scene work that you can't see or feel. I remember someone on BB writing about how they thanked their brain for how hard it was working to heal and that they knew it was doing its very best. I started doing that, especially when I felt the most hopeless.

 

An important distinction to make is that feelings of hopelessness are different from there being no hope. You can use a different part of your brain to separate facts from feelings. The facts are that right now you're so many months into wd and you have this that and the other symptom. Nothing about the future is fact. That's all interpretation and fear. I have to remind myself to practice this over and over.

 

I discovered this article the other day for coping with intrusive thoughts of hopelessness or even wanting to die. It includes this coping phrase: "It might get better." Maybe you can't believe it will get better but your mind will let you consider that "it might." Until then, you can trust those who've walked through the fires before you to shine the light of hope up ahead until you're marching on the road with us and knowing to your bones, "It does get better." Until then, "I think I can. I think I can. I think I can" because "It might get better."

 

MT

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Oh MT.

 

I’m crying.

 

This is one I was waiting for.

 

You helped so many people here with your gratitude attitude, and your persistent calm in the face of unrelenting insomnia.

 

I can’t go on. I’ll go on.

 

Thank you always.

 

JKS

 

Hey JKS,

 

How nice to hear from you. Thank you for your touching words and for reminding me about "I can't go on. I'll go on." (Samuel Beckett). I forgot about him but I well remember saying dozens of times per day that "I can't." His words gave me a way to frame it. Yes, I felt I couldn't continue and yes, I was going to continue one freaking moment at a time.

 

I sure hope you're doing well. Thank you for your good work as a moderator. We need people like you!

 

MT

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MTfan, congratulations!  Thank you so much for writing this incredible message of hope and strength.  You were on a real cocktail of meds, what an accomplishment in eliminating them from your life.  I wish you all the best in your future benzo free life.

 

PG  :smitten:

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Congratulations MT.  I remember your posts and your struggle with severe insomnia.  That was my major issue as well.  We’re very close in our time off, I’m at 4 years and 1 month.  Insomnia is still a problem but much much better.  I think being premenopausal is contributing to my sleep issues at this time in my life.
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I like the idea of using the mantra, "It might get better." Seems more realistic in the state of mind we are in.

 

Did you have lots of other intrusive thoughts too?

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