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4 years and 3 days and it was all worth it!


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I gotta say that I didn't think I would ever actually get here, free from 20mg of Valium after so many years, and I think it's totally fitting that this is my 500th post on this site since I joined in 2010!

 

A bit of background here. I started having panic attacks in 2004 and went to see a doctor (I didn't have a regular doctor despite being fully insured because I was young and never saw the doctor unless I was sick) who gave me a prescription for .5mg Xanax as needed and also for 20mg Paxil. I didn't react well to the Paxil so I didn't take it for long but the Xanax was a godsend for me. I would take one when I had a panic attack and it would resolve it in minutes. I kept taking the Xanax as needed for years, kept myself to using it 2-3 times a month, sometimes more, sometimes less, but all very responsible and sometimes I would go weeks without needing one.

 

Unfortunately my lung collapsed in 2007. It was a spontaneous pneumothorax; something that affects tall, skinny, but otherwise healthy, young men. I was in the hospital for 7 days and my lung wasn't re-inflating with the tube so we opted to do surgery. They did chemical pleurodesis to obliterate the pleural space in my left lung and permanently affix my lung to the rib cage scar tissue. You can imagine that this process was extremely painful and had a hefty recovery associated with it. I was out of work for six weeks and they had me on Vicoprofen for the pain. The Vicoprofen caused me to panic and instead of doing the smart thing and switching me to morphine pills since I handled the morphine drip fine, they gave me .5mg Xanax with each dose. After six weeks of this I went back to work and stopped taking everything and ended up stuck in the men's restroom on the phone with my family doctor convinced I was dying. He asked me what I had been doing and what had changed and I told him I stopped my Vicoprofen and Xanax cold turkey. I got a lecture about that and he told me to start taking the Xanax three times a day because you can't just suddenly stop.

 

Honestly it should have been a huge red flag when he told me that I had to keep taking the Xanax but I was so miserable that I just wanted relief and so I went through with it. You have to figure that I was probably having some degree of withdrawal symptoms from the Vicoprofen too seeing how that stuff is 7.5mg of hydrocodone and I had never had any opioid medication before that and was suddenly taking 3-4 of them a day so I was just miserable but the Xanax worked and I went to my new .5mg three times a day dose. It wasn't long before my tolerance started escalating and within a year I was up to 4mg IR and 4mg XR and still feeling no relief.

 

Doctor cut me over to 4mg of Klonopin (I requested this dose as I felt sure I could adjust to it after doing research online but I don't recommend making this kind of switch, it had me laid up in bed for a few days of hell before the Klonopin started to actually work, and for me 1mg Xanax = 1mg Klonopin so it was a huge dose reduction) which I was on until 2009 when I actually dropped a milligram as I felt overly medicated. Stayed on 3mg until 2010 when some stress and other factors made the Klonopin stop working. My doctor bumped me up to as high as 6mg and I got no relief so he switched me to 80mg of Valium so that I could try to taper off.

 

I got the Valium down to about 15mg within a month before I had what I swear was a seizure and went back to 20mg and stayed there. I was on that dose until I decided to taper in 2012 and 2018 and it was never sufficient enough to actually work for my anxiety so I spent all of those years in tolerance withdrawal. I drank to cope with the tolerance withdrawal and of course, this made all of these problems much worse.

 

In-between all of this I had multiple stays in inpatient facilities; some for detox, some for mental breakdowns. There were at least four occasions where I was rapid tapered, a few times I C/T myself, a time where my Valium got switched to Klonopin for a few months when I moved and didn't have access to Valium, a boatload of insanely high alcohol consumption (at one point I was drinking a handle of vodka in just 2-3 days), recreational drug use happened, and just basically a whole lot of chaos and a whole lot of opportunities for kindling.

 

I got fed up with everything in 2017 and decided it was time to make changes. I reached out to the county in 5/2017 to get some help and they approved me for long term care benefits. I got a personal care assistant that came and did things like grocery shopping and cleaning for me which took a lot of stress off of me and they set me up with the county mental health office who had a therapist who actually came out to my house to visit with me since my agoraphobia was so bad. I stopped drinking 7/1/2017 (I have since only been drunk once - New Years that year my roommates went out of town and I had a three day bender), I started tapering 2/14/2018, and I dropped nicotine 12/1/2018 (this wasn't actually planned, I just woke up and decided I was done - gave my roommates all my eliquid, tanks, and mods and that was the end of it).

 

The taper was the hardest thing I have ever done in my life. I started off with dry cutting. First few cuts were 1mg and they were brutal. I started making smaller cuts as time went on. When I got to around 7mg I was starting to have episodes where I was so panicked I ended up having to updose. I knew that wasn't sustainable so I switched to a DLMT. I made my own solution from my pills (I tried the pharmaceutical solution a few months after I started tapering because my psychiatrist warmed to the idea after I told her I was already doing it and felt absolutely nothing from it, went into total withdrawal, so I went back to making my own with propylene glycol and water) and experimented with different sized cuts every 14 days ranging from 7.5% to 2.5% and landed at 3.5% being the most acceptable for duration of the taper and the withdrawal symptoms. Despite going so slow though, I had lots of holds anyway, some like the huge wave when I went under 2mg lasted for months. I felt like I was never going to finish and I continued to need to updose.

 

Finally in August last year I told myself that I wasn't allowed to updose anymore and I just pushed myself to get it done. No matter how bad the anxiety was, no matter how bad the insomnia was or how bad my body was buzzing from lack of sleep, I was not allowed to take a rescue dose. This worked and I finally was able to jump after I went to the dentist in February.

 

I am doing better now than I was before I started tapering but I'm not anywhere near 100% recovered to where I was before taking the benzos. I still have to carry a bottle of 2mg pills around with me as a safety blanket, I still have panic attacks when my heart rate elevates (ugh I have such a fixation on my heart rate), I still have varying degrees of agoraphobia, but I am positive and I'm looking forward to the future. I am completely off of psych meds for the first time since I was 20 years old (I'll be 38 in October) which is huge because I have also been diagnosed with bipolar and other mood disorders over the years. The only thing I take is 100mg of doxycycline every day for my ocular rosacea (which actually has been a godsend for my facial rosacea). Crucially, I'm also still sober with no real interest in getting drunk. This is amazing for me as I was very much an escape artist and now I am actually facing my past traumas and working through them, something unfathomable even a few years ago.

 

The next steps for me are to find some exercise I can actually tolerate and do regularly, then I have to get myself comfortable being away from the house when I'm exercising, then I have to make it on to public transportation, then I have to make it to and from a restaurant by myself, then the grocery store, then the movie theater, and finally I need to take a trip to another city and rent a room by myself. Once I have accomplished all these things, I will be confident that it is time to try to get a job and get off of disability (my fight for disability went from 1/2011 to 3/2014 and it cost me everything so I won't risk losing it until I am good and ready). One thing is sure though, I'll never let myself take the benzos again. It was such a fight to get free and I feel hugely accomplished in getting to this point and I have no desire to throw that away. 

 

:smitten:

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What an amazing story of courage and perseverance, thank you for sharing it with us.  I'm so happy to hear you're benzo free, uninterested in alcohol, nicotine free and looking forward to becoming self sustaining. 

 

You've come so far and grown so much, it was a pleasure to read of your success.  :smitten:

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What an amazing story of courage and perseverance, thank you for sharing it with us.  I'm so happy to hear you're benzo free, uninterested in alcohol, nicotine free and looking forward to becoming self sustaining. 

 

You've come so far and grown so much, it was a pleasure to read of your success.  :smitten:

 

Thank you, it really was a huge accomplishment! I had never really been one to set goals like this for myself before, it was a totally new experience. Honestly I am a completely new me now. I spent the taper period also honing my financial skills so I have gotten myself up from 600s for my FICO 8 score to 790-801 now as well as amassing a pretty decent chunk of savings since 7/2020 when previously I couldn't save at all, never more than $100 and often using my overdraft protection to keep me afloat between paychecks. It's crazy that it all started with my desire to get off this crap lol.

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Amazing! You're only 2 months off so I can only imagine the places you'll go in 6 months to a year. I'm 21 months off benzos and I started exercising and setting healthy habits a year ago. Exercising has been a savior for me. I highly recommend finding trails to walk near you. You can go during the day on weekdays so there won't be anyone there. Hiking short trails while listening to music has truely been life saving for me. Sometimes it's hard to get up and go but once I'm there I feel SO much better and for a few hours after.
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Wow! Congratulations to you! Thank you for sharing your smashing success story with us. You have done amazing things and should feel very proud of yourself.  You are young and I hope you enjoy all the many years of healthy and "feel good" years ahead of you.

 

 

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Amazing! You're only 2 months off so I can only imagine the places you'll go in 6 months to a year. I'm 21 months off benzos and I started exercising and setting healthy habits a year ago. Exercising has been a savior for me. I highly recommend finding trails to walk near you. You can go during the day on weekdays so there won't be anyone there. Hiking short trails while listening to music has truely been life saving for me. Sometimes it's hard to get up and go but once I'm there I feel SO much better and for a few hours after.

 

I live in a really nice area southwest of Denver with lots of trails around. I was thinking I should get a bike because that's what I used to do when I was a kid and I also strangely feel better when I'm sitting down than standing up. It seems like it's harder to breathe when I'm standing up. It may just be exactly but I seem to remember feeling the same when I was younger, just that it didn't bother me as much as it does now because I didn't panic when I was short of breath like I do now. I know the exercise is a key component to me ever recovering so I definitely need to address that sooner or later. I started walking around the neighborhood a bit and had to stop because it was hiking my anxiety so much so it may be a little early for that but I'm thankful that I'm still able to sleep (with difficulty lol) and that I seem to be doing pretty dang well, all things considered.

 

I still can't tolerate music for long... That has been BRUTAL for me because I used to DJ as a hobby and now the idea of even listening to EDM is like... nope. I can handle some 80s/90s/2000s rock but not much else and even then, I can't handle it for long.

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Wow! Congratulations to you! Thank you for sharing your smashing success story with us. You have done amazing things and should feel very proud of yourself.  You are young and I hope you enjoy all the many years of healthy and "feel good" years ahead of you.

 

Thank you very much! My therapist is always pushing me to make sure that I acknowledge how far I have come and the amazing accomplishments I have made along the way. Definitely looking forward to having some feel good years! :D

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Congratulations Etherealremnant!!  You are an amazingly strong person!! You have been through so much and have come so far!!

Stay strong and have an amazing life!! :angel:

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Amazing! You're only 2 months off so I can only imagine the places you'll go in 6 months to a year. I'm 21 months off benzos and I started exercising and setting healthy habits a year ago. Exercising has been a savior for me. I highly recommend finding trails to walk near you. You can go during the day on weekdays so there won't be anyone there. Hiking short trails while listening to music has truely been life saving for me. Sometimes it's hard to get up and go but once I'm there I feel SO much better and for a few hours after.

 

I live in a really nice area southwest of Denver with lots of trails around. I was thinking I should get a bike because that's what I used to do when I was a kid and I also strangely feel better when I'm sitting down than standing up. It seems like it's harder to breathe when I'm standing up. It may just be exactly but I seem to remember feeling the same when I was younger, just that it didn't bother me as much as it does now because I didn't panic when I was short of breath like I do now. I know the exercise is a key component to me ever recovering so I definitely need to address that sooner or later. I started walking around the neighborhood a bit and had to stop because it was hiking my anxiety so much so it may be a little early for that but I'm thankful that I'm still able to sleep (with difficulty lol) and that I seem to be doing pretty dang well, all things considered.

 

I still can't tolerate music for long... That has been BRUTAL for me because I used to DJ as a hobby and now the idea of even listening to EDM is like... nope. I can handle some 80s/90s/2000s rock but not much else and even then, I can't handle it for long.

 

You'll get there with time! Biking sounds like a great way for you to reconnect with who you were before benzos. Congrats again on the HUGE accomplishment!

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Congratulations, ER, on such a big accomplishment after a long and hard-fought taper! I hope things continue to get better daily.
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Congratulations, ER, on such a big accomplishment after a long and hard-fought taper! I hope things continue to get better daily.

 

Thanks! It is definitely a daily struggle. Some days are worse than others. I can't seem to get myself over the freaking out about my health part of things and then I get so anxious that there might be something wrong that I can't bring myself to go to the doctor. Like I'm pretty sure I'm fine and that this is all anxiety, I mean I am doing things I couldn't do even a year ago, but it's a constant fight with my mind.

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  • 3 weeks later...
  • 1 month later...

Just an update... Things continue to go amazingly well.

 

I don't have agoraphobia anymore at all, I have an amazing partner who totally supports me, and I've only had one serious panic attack since probably January which was a week or so ago. I'm having windows virtually every day. My biggest major issue is dealing with some erectile dysfunction (which fortunately the partner is being supportive about) and my BP has been a bit higher but I am coping pretty well overall.

 

I even am planning to buy an ebike soon, just waiting for my new credit card to get here so I can get $300 of the purchase back from Wells Fargo. My partner bought his yesterday and we plan to go riding together. It is completely unfathomable to me that I am where I'm at with my healing. I know it won't always be smooth sailing, and I'm definitely nowhere near 100%, but I am thankful to just be free and healing. I can deal with the rest.

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  • 2 weeks later...

You're doing good, keep at it. Our stories are very similar, even where we lived. I was living in Denver Tech Center for a while and then I had to live in downtown Denver while I was going through benzo withdrawal, only I was living outside. And then I went to Boulder and then I went to aurora, and alcohol was my medicine and the streets were my home.

 

Just recently I moved to Seattle after going through years of Hell after a cold turkey off Klonopin and Valium. I had to fix my credit just like you, I took it from a 480 up to 750 and it was no easy task, it was all hard work.

 

I completely understand the doctor thing, my doctor wrote me an fl2 form because I was a vegetable temporarily. I couldn't do grocery shopping or any of that stuff either, so they ordered a physical Home Care person but there was a 9-month wait, so it never helped.

 

I had to do the disability thing as well, that's what my doctor suggested as well. And yes, definitely don't get rid of it because then you're probably never going to get it again, and don't fall for that ticket to work program either. Even if they let you work and keep your benefits at the same time, they still look at your progress and see whether or not you might be capable of working more hours. Just keep the benefits and heal while you can, so that you can work and make some real money in the future.

 

Don't end up homeless on the 16th Street Mall or Colfax like I was temporarily, that's no fun.

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Also I should add, I had to go to Highlands behavioral and Centennial hospital and Denver cares and Arapahoe house, as well as Swedish Hospital and Boulder emergency, as well as about three or four other Mental Health emergency clinics around the Denver area. All of those medical facilities in the Denver metro area became my full-time home a few years back. Try to stay out of them if possible.
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