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Not the kind of waves I was looking forward to


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Back in acute 3 months out.  I did a very rapid taper from .75m Ativan to 0 in 10 days.  I am as dysfunctional today as I was on day one.  I had some stressful news set me off a couple days ago and had zero sleep that night.  Maybe 4-5 hours last night.  I live steps from the beach and could be enjoying ocean waves, but instead I'm in solitary confinement battling a different kind of wave.  At least inmates get an hour outside. 

 

Everything has changed for me in the last 3 months.  Personality/Relationships/Outlook just to name a few.  I have had a few days where I could go out and see people from my community.  Made it to the gym 7 or 8 times but my usual workout seemed to make me worse.  I have been such a staple in my community for so many years.  People reach out and I explain it to those I know will believe me, or at least will not tell me to just get over it.  With the rest of them I just have to stay distant and vague.

 

I keep thinking I messed up bad with the rapid taper (basically CT).  This was before I found BB or Ashton. The times I used it in the past were short term and CT with seemingly no consequences.  Not so lucky this time.  I have scoured this forum (bad obsession I know) to look for patterns.  Its hard to know what is true and what is opinion when it comes to recovery potential.  Plenty of people who taper seem to suffer as much as CT.  I guess we are all different.  I don't know how to plan for the future feeling like this.  Many of the coaches say to stay off the forums, but I can't help it.  I have to search for a realistic answer and try to find a way to improve. 

 

I keep thinking of that first doc visit when I needed help sleeping 6 years ago.  Death in the family, cancer in another family member, career stress and more.  I didn't understand what I was being prescribed.  Had he said Xanax I would have bolted then.  Instead it was some obscure medicine called lorazepam.  Little did I know.  He just wrote the script and didn't even tell me what it was.  I was just so eager to have solution for my stress induced insomnia. 

 

He put a friend of mine on xanax during Covid.  He is still on it and struggling. I worry for him.  This doc has done way more harm to my community than good.  He doesn't seem like a bad guy.  Just ignorant like the rest of them.  I don't even want to go back to him for my annual physical.  If I bring this up he'll probably get defensive and treat me like a mental patient. 

 

The 2nd time he wrote me a script for this was May 2022.  By then I knew what it was but still didn't understand the consequences.  I used about 20 of the .5mg pills over 3 or 4 weeks.  This was after the FDA introduced the black box warning.  I don't understand why he didn't tell me then.  Surely he should have been aware of the FDA warning. 

 

I was able to rip myself off them last year but looking back my behavior and personality had changed a bit.  I was putting myself in extremely stressful situations which ultimately led me to reach for the leftover script from last year at the beginning of Feb this year. 

 

I know once I get some better sleep I will feel better.  I just don't know how I can navigate my world if I can't take on stress. 

 

I'm not trying to be a downer.  Just want some feedback about rapid taper.  This year I was on for 33 days total including 10 days rapid taper.  I started at .25mg for about two weeks, then .5mg for a week, then .75mg for two days.  That is when I realized I was up-dosing and becoming tolerant quickly, so started to rapid taper.  I went down .05mg every day from .75mg till .2mg.  Then I jumped off. 

 

J

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Hi there,

 

The one sentence that really popped for me was when you said you didn't know how to plan for the future like this. It's impossible to think ahead, not only because you don't know how long healing will take, but also because you're usually not exactly thinking straight!

 

Let's see. I went from 2-.5 mg pills of clonazepam down to 3/4 of a pill in about 6-8 weeks. I was in the soup pretty quickly. I didn't know a thing about benzodiazepines; I was just told to come off them by a doctor so I complied. I know you've already experience the downward plunge. I found bb and thought to myself, I'll just go a lot slower. So I tapered from 3/4 of a pill to nothing in about four months. Jumped August 30, 2022. Not the rapid taper you did but pretty quick. I'm at nine months out now. I'd say I'm at about 65% now.

 

Not surprised you're back in acute three months out. I went in and out for the first four months. Then I noticed I was spiraling, but the trend was upwards. A sort of dance started; a wave comes, I think I'll never get better, the wave goes, leaving me a little higher on the shore. Over and over again waves came and I honestly have thought at times the waves aren't getting lighter; I'm just getting used to feeling lousy.

 

The truth is I'm getting better. I'm a whole lot better than I was and you will be too. You sound like a very active person in your community and it also sounds as if it means a great deal to you. For what it's worth, I tried to keep as many relationships going that I could. I faked it. I think I got a lot quieter, and wasn't out and about as much as before, but I believed if I fake it until I make it, my life will be more intact when I come out of this. And that seems to be true so far.

 

There are some meds that can actually help you through this (a bit!) and it's highly individualized. Odds are if you use a med, there will be a reckoning when you recover, and something else to wean from. But with the exception of an old A/D called mirtazepine, meds like Gabapentin and proprolinol (sp?) seem to help people with their sleep and with that inner vibration/jitteriness that's so killer. I'm not a doctor, this is just what I've seen.

 

You've done the hardest part. You've come a long, long way and it gets better. I'm sure you know this but deep breathing and distracting help a lot. Nothing takes this away. But getting through just one day is a feat of heroism. And it's doable. You'll string  days together, one at a time, and you'll be high on the shore and better. It's coming! 

:hug:

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Hi there,

 

The one sentence that really popped for me was when you said you didn't know how to plan for the future like this. It's impossible to think ahead, not only because you don't know how long healing will take, but also because you're usually not exactly thinking straight!

 

Let's see. I went from 2-.5 mg pills of clonazepam down to 3/4 of a pill in about 6-8 weeks. I was in the soup pretty quickly. I didn't know a thing about benzodiazepines; I was just told to come off them by a doctor so I complied. I know you've already experience the downward plunge. I found bb and thought to myself, I'll just go a lot slower. So I tapered from 3/4 of a pill to nothing in about four months. Jumped August 30, 2022. Not the rapid taper you did but pretty quick. I'm at nine months out now. I'd say I'm at about 65% now.

 

Not surprised you're back in acute three months out. I went in and out for the first four months. Then I noticed I was spiraling, but the trend was upwards. A sort of dance started; a wave comes, I think I'll never get better, the wave goes, leaving me a little higher on the shore. Over and over again waves came and I honestly have thought at times the waves aren't getting lighter; I'm just getting used to feeling lousy.

 

The truth is I'm getting better. I'm a whole lot better than I was and you will be too. You sound like a very active person in your community and it also sounds as if it means a great deal to you. For what it's worth, I tried to keep as many relationships going that I could. I faked it. I think I got a lot quieter, and wasn't out and about as much as before, but I believed if I fake it until I make it, my life will be more intact when I come out of this. And that seems to be true so far.

 

There are some meds that can actually help you through this (a bit!) and it's highly individualized. Odds are if you use a med, there will be a reckoning when you recover, and something else to wean from. But with the exception of an old A/D called mirtazepine, meds like Gabapentin and proprolinol (sp?) seem to help people with their sleep and with that inner vibration/jitteriness that's so killer. I'm not a doctor, this is just what I've seen.

 

You've done the hardest part. You've come a long, long way and it gets better. I'm sure you know this but deep breathing and distracting help a lot. Nothing takes this away. But getting through just one day is a feat of heroism. And it's doable. You'll string  days together, one at a time, and you'll be high on the shore and better. It's coming! 

:hug:

 

What a kind and thoughtful response.  Thank you.  When you say 65% better at 9 months does that assume 0% on day one?  I am resilient at suffering but this is a whole new game for me.  I have been keeping relationships going by texting and the occasional visit to my local coffee shop and gym. 

 

Normally I'm out and about all over town and having 20-30 different conversations.  I'd see 100 people I know every day.  Community is a big part of my life and my mission.  I quit drinking when I was 24 and spent the next 24 years helping others and talking to them when they were down.  I was confident I had put the kind of misery drinking had brought far behind me.  Little did I know there were some deeper depths I would plumb ... brought to me by an ignorant doctor. 

 

Thank you for the suggestions.  I think I'm going to try to stick it out without meds. 

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Hi J,

Yes, the 65% better started the day I jumped. From that day on, things never got any worse. Progress was maddeningly slow and sometimes imperceptible, but it was progress I could see in hindsight.

 

You're right, this is suffering that plumbs a new depth, in part because the nature of it, but also because there is no clear trajectory and very little, if any, support from the medical industry. Very few people understand and in many ways, I wouldn't want them to. They could understand if they'd been through it, and I wouldn't want one day of this for anyone I know. I have supportive family, and one sister I've always been particularly close to. That relationship has taken a hit because a part of her always believed that I could work harder at healing, so I've had to pull away a bit. Still, I have great hope that as my CNS repairs, there will be time and opportunity for it to grow again.

 

I know this is striking at the core of who you are and what you do. There may be days when you think you'll never be back, but you will. Your experience may be more short-lived than mine, too. The fact that you can get out and talk to people at all is fabulous. It won't feel good for a while but keep doing what you can, and give yourself permission to hibernate when you have to.  Rest all you can, exercise when you can, eat clean, healthy foods when you eat. You know the drill, I'm sure! There's always a time of day or night when you feel a bit better. Maybe you can use that time to text/call/stroll out to the coffee shop and say hello when you feel almost up to it? I usually push myself a little bit. I go out of my comfort zone (which is pretty narrow these days) in order to stretch it out. Been doing that since about month four.

 

Anyway. Hoping for better things for you, very soon! Sunshine and outdoors can be really healing, and you're by the water so you get the trifecta of natural healing. May it bring you up to better health as quickly as possible!! :smitten:

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You are going to get better and I relate, in my own ways, to this original post. It's very, very hard. I am active in my community with two active younger children in sports and a husband who coaches little league. I fake it a TON. I'm currently 25.5 weeks off with a lot of physical symptoms. DO NOT get hung up on CT vs. taper. I CTed originally, reinstated to taper for 8 months and there's been little difference for me between the two. I personally feel I wasted my time over 8 months and should have just stayed the journey healing but hindsight is 20/20.

 

Keep on keeping on. We live very close to the ocean and I hear you...these are not the waves I want to experience either.

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Geraldine burns advised me to go visit body's of water often. I don't have one close by. Try to enjoy the ocean as much as possible. It has good air.
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