13 Months and I really need some help here

[[Ic...]]

I haven’t posted here yet; I think it’s time. I need help, I need someone to tell me that in month 15 they found it all got better over night.

4-5 years on Clonazepam 2mg a day. A 6 month taper, last pill was May 10 2023.

I am firmly in the trigger phase, and I for life of me cannot see this truly getting better. I eat eggs and fruit and milk and nuts only, and I still get triggered into multi day waves. I have zero interest in hearing what people have to say, I can’t get out of bed. If I stay in bed I’ll regret it because the anxiety keeps piling on. I can’t handle any kind of pressure. My partner’s child asked for an extension cord and I wanted to go running to the bed.

My thoughts slam into each other. I make a choice to do something, and then I second guess that choice immediately like it’s a bad idea. I stare at people talking to me. I can almost predict what they’re going to say next because I am so annoyed.

I’m tired and I can’t go to my partner any more because it’s too hard on them. It affects their work day.

I have my doctors appointment next week. Is there anything he’ll suggest for me this far out? Is there something you guys know that I need to avoid? Sunshine? Wind? Smiling?

I’m writing this in a wave, yes, but the last 25 days have felt like a blur of a wave and a window. I don’t know what reality is anymore. I don’t know who I am or what I stand for. 

Please is there anyone with 16 months or 20 months that can advise?

 

Edited June 12 by [Ic...]

[[Co...]]

Hello @[Ic...]. Welcome to BenzoBuddies.

I am sorry to read that you are struggling s much. Most of here understand what you are going through. But do not give up hope - it is not unusual for our members to be still struggling one year out. Though, it is quite common to then experience improvements in the 12-18 moth period.

Can you tell us a bit about your taper? What size reductions did you make, and over what timeframe?

[[Pa...]]

Hello @[Ic...],

I know how frustrated you are, you feel like you've lost yourself, that you'll never return to who you were but you can, we have thousands of success stories from members just like you, people who were just as lost.  I lived on them when I was where you are, I hope you'll take some time to read a few.

I was on Klonopin/Clonazepam as well, in a dose a little larger but about the same time frame and I quit cold turkey and still managed to recover.  You probably won't wake up one day to no symptoms, you know from experience the symptoms change, fade and return but there will come a day when you think to yourself, hey, I haven't felt that one in awhile.  You won't trust this of course, since you've been fooled before but you'll finally start to believe that one is gone.  I wish the symptoms would leave as dramatically leave as arrive but for most, what began with a bang ends with a blissful whimper.  And that's what it feels like, bliss. Please don't give up believing in your miracle.

May I ask, are you on any other medications prescribed by your doctor, any supplements?  Also, your diet is very restricted, are you getting proper nutrition and has your diet evolved over time due to sensitivities?  Speaking of your doctor, does he understand withdrawal and recovery?  

We can look at your health and lifestyle to try to find a reason you're still suffering but unfortunately as @[Co...] mentioned, you're still in the time frame we consider typical for recovery, this process takes too long.

Pamster

 

[[Ic...]]

7 hours ago, [[C...] said:

Hello @[Ic...]. Welcome to BenzoBuddies.

I am sorry to read that you are struggling s much. Most of here understand what you are going through. But do not give up hope - it is not unusual for our members to be still struggling one year out. Though, it is quite common to then experience improvements in the 12-18 moth period.

Can you tell us a bit about your taper? What size reductions did you make, and over what timeframe?

I can’t tell you how much it means to get any kind of helpful reply, thank you.

 

I tapered rather quickly, about .25mg every 2-3 weeks over 6 months, from December 1st to May 10th. I did stop from January to mid March to take a break. I might not have taken the taper entirely seriously if I’m being honest, but it was on average a .25 drop every 14-21 days. The pharmacists advised .5mg every 2 weeks.

Do we know any literature on why this repair take so long?

[[Co...]]

Hi @[Ic...]

With your two month break in the middle of your taper, it all might have been too much. Tapering off 2mg clonazepam over 6 months is quite fast around here (even if if a lot longer than your doctor might propose). But that 2 month break means it was more like two tapers, each about two months long.

What was your dose when you restarted your taper in March?

[[Ic...]]

3 hours ago, [[P...] said:

Hello @[Ic...],

I know how frustrated you are, you feel like you've lost yourself, that you'll never return to who you were but you can, we have thousands of success stories from members just like you, people who were just as lost.  I lived on them when I was where you are, I hope you'll take some time to read a few.

I was on Klonopin/Clonazepam as well, in a dose a little larger but about the same time frame and I quit cold turkey and still managed to recover.  You probably won't wake up one day to no symptoms, you know from experience the symptoms change, fade and return but there will come a day when you think to yourself, hey, I haven't felt that one in awhile.  You won't trust this of course, since you've been fooled before but you'll finally start to believe that one is gone.  I wish the symptoms would leave as dramatically leave as arrive but for most, what began with a bang ends with a blissful whimper.  And that's what it feels like, bliss. Please don't give up believing in your miracle.

May I ask, are you on any other medications prescribed by your doctor, any supplements?  Also, your diet is very restricted, are you getting proper nutrition and has your diet evolved over time due to sensitivities?  Speaking of your doctor, does he understand withdrawal and recovery?  

We can look at your health and lifestyle to try to find a reason you're still suffering but unfortunately as @[Co...] mentioned, you're still in the time frame we consider typical for recovery, this process takes too long.

Pamster

Thank you for your kind reply, you folk are wonderful warriors.

 

I woke about 2 hours ago and I felt relatively ok. It took about 20 minutes to become overwhelmed again and my thoughts began turning exaggerated. My emotions lingered too far on all ideas and thoughts and situations. I ate a banana and that helped a little. I showered and as I began typing this I started to get agitated and confused and upset. I didn’t know what to type here. So I ate an apple and that helped, I feel more balanced.

Clearly I am deep into a blood sugar trigger phase. I can’t leave the house without yogurts and bananas.

No supplements. I restricted foods for cautionary reasons. I’ll take a multi vitamin shortly. Can a vitamin really be the difference between a wave or a window however?

Caffein and refined sugars are out. Anything spicy is out. Can being slightly dehydrated cause symptoms? 

Do you happen to know any other triggers? 

My doctor is very understanding, but we haven’t spoke in 4 months. I moved from the east coast of Canada to the west, which was just the worst idea I could have ever done. It’s time for a update with him next week on the 18th.

He’ll be extremely supportive and will probably offer some solutions, he’s very intelligent. He may offer gabapentin if I ask for it. But I have no interest in trying anything like that.

Any reply is wonderful. Thank you for your words. Ive read them all 4 times. 

[[Ic...]]

17 minutes ago, [[C...] said:

Hi @[Ic...]

With your two month break in the middle of your taper, it all might have been too much. Tapering off 2mg clonazepam over 6 months is quite fast around here (even if if a lot longer than your doctor might propose). But that 2 month break means it was more like two tapers, each about two months long.

What was your dose when you restarted your taper in March?

When I restarted it was about 1 milligram or so. Maybe 1.25. I was off of work of course because I couldn’t function, and of course I wanted to get it out of me as swiftly as possible, so i could get back to work and some sort of normalcy. And of course here we are a year later and I’m still knee deep.

[[Cr...]]

35 minutes ago, [[I...] said:

Do we know any literature on why this repair take so long?

This is a very indepth read but very helpful in explaining why we feel the symptoms we do and why it takes quite awhile to get better. Written by a well-educated member familiar with neuroscience that went through benzo withdrawal.

I just recently got around to reading it. It is well worth the time and may allay some of your fears about the finicky nature of the recovery process by demystifying it.

Edited June 12 by [Cr...]

[[Co...]]

35 minutes ago, [[I...] said:

When I restarted it was about 1 milligram or so. Maybe 1.25. I was off of work of course because I couldn’t function, and of course I wanted to get it out of me as swiftly as possible, so i could get back to work and some sort of normalcy. And of course here we are a year later and I’m still knee deep.

Yeah. Tapering off 1-1.25mg clonazepam over about 8 weeks is a lot faster than what the majority of our members would probably choose. At at lower doses, members generally make smaller cuts and/or allow more time between each reduction. In the circumstances, it is not surprising that that you feel unwell. Even in the best of circumstances, it is not unusual for it to take some (or many) months before there are significant improvements. More time is the answer.

Reinstatement (of a small dose) is an option. But after about 5 weeks, it would be a large backwards step. Your brain will have already made significant progress towards normal functioning over this time (even if it does not feel like it). If you can tolerate it, I would suggest waiting this out. Reinstatement now would be a significant setback to your progress.

[[Ic...]]

44 minutes ago, [[C...] said:

This is a very indepth read but very helpful in explaining why we feel the symptoms we do and why it takes quite awhile to get better. Written by a well-educated member familiar with neuroscience that went through benzo withdrawal.

I just recently got around to reading it. It is well worth the time and may allay some of your fears about the finicky nature of the recovery process by demystifying it.

Thanks Crono, I remember reading this last summer, and then again in the fall, and maybe 2 months ago, lol. It’s a wonderful post for sure.

[[Ic...]]

7 minutes ago, [[C...] said:

Yeah. Tapering off 1-1.25mg clonazepam over about 8 weeks is a lot faster than what the majority of our members would probably choose. At at lower doses, members generally make smaller cuts and/or allow more time between each reduction. In the circumstances, it is not surprising that that you feel unwell. Even in the best of circumstances, it is not unusual for it to take some (or many) months before there are significant improvements. More time is the answer.

Reinstatement (of a small dose) is an option. But after about 5 weeks, it would be a large backwards step. Your brain will have already made significant progress towards normal functioning over this time (even if it does not feel like it). If you can tolerate it, I would suggest waiting this out. Reinstatement now would be a significant setback to your progress.

Thank you Colin, as I was typing my details to you I felt like I was in trouble admitting that my taper was less than ideal. I have very little ability to take any kind of stress. I can’t tell if I’m in a wave or a window, or if I still have morning cortisol flowing through me. 

Without a doubt reinstating is out of the question. May last Clonazepam was in 2023, so that was May of last year not this year. I jumped May 10th 2023, and it’s been 13 months benzo free, and I am still suffering.

I just had an egg and some strawberries. I may go for a walk in a bit. I’m unable to work.

[[Co...]]

7 minutes ago, [[I...] said:

Thank you Colin, as I was typing my details to you I felt like I was in trouble admitting that my taper was less than ideal. I have very little ability to take any kind of stress. I can’t tell if I’m in a wave or a window, or if I still have morning cortisol flowing through me. 

Without a doubt reinstating is out of the question. May last Clonazepam was in 2023, so that was May of last year not this year. I jumped May 10th 2023, and it’s been 13 months benzo free, and I am still suffering.

I just had an egg and some strawberries. I may go for a walk in a bit. I’m unable to work.

If it helps you, I was on 4.5mg clonazepam, and tapered off (out of ignorance) over a six month period. I was very unwell, and for a long time afterwards. And this was a far longer schedule than the one suggested by my neurologist. If our doctor does not know, how are we to know!?

Try not to give yourself a hard time over this. It will take time, that's all.

[[Cr...]]

31 minutes ago, [[I...] said:

Thanks Crono, I remember reading this last summer, and then again in the fall, and maybe 2 months ago, lol. It’s a wonderful post for sure.

Yeah, I was pretty impressed when I read it. Sadly, outside of some independent studies done by rogue medical scientists, you won't find too much literature on benzo withdrawal beyond the acute phase. At least in regards to presenting the PAWS process in laymans terms. Many written articles can't say definitively why things happen the way they do in PAWS withdrawal but are speculations made by interpreting known scientific processes and then possobly peer-reviewed for concurrences.

Even now decades after the advent of ssris the medical industry still uses cautionary phrases like "Its is believed that" or "It is thought that" in regards to how they alleviate depression by causing changes in the serotonin levels of the brain.

The brain is a complicated, but fascinating, organ that has so many complexities that even the most well-educated neuroscientists can only postulate theories as to why certain interactions and effects occur from various medications.

Edited June 12 by [Cr...]

[[Ic...]]

36 minutes ago, [[C...] said:

If it helps you, I was on 4.5mg clonazepam, and tapered off (out of ignorance) over a six month period. I was very unwell, and for a long time afterwards. And this was a far longer schedule than the one suggested by my neurologist. If our doctor does not know, how are we to know!?

Try not to give yourself a hard time over this. It will take time, that's all.

Thanks so much.

Can I ask, does the ability to go into a wave just diminish? Does the brain re open enough GABA receptors where if I miss a meal or eat a gummy bear, I simply wont get sick?

How does it know how to do this? It must be correcting for a new homeostatic state at all times?

[[Go...]]

@[Ic...] I am at a little over 16 months and I can only tell you what I have experienced.  I noticed some improvements at times over the past year, but for the past few weeks life has been tough, and my symptoms feel like Day 1 again.  There have been multiple times over the past 16 months when all I wanted to do was go back to the doctor, get a script, and go back to some sense of calm. It’s difficult for me at times to comprehend why I haven’t gone back and picked up that script!
   I have to remind myself that the pills weren’t working in the end.  Early in 2023, I was calling 911 with “bad thoughts”, and sleeping my days away.  
    Im still in a bad spot, but IMO going back to the pills probably would end up with me worse off than before.  Trust me, this life sucks right now.  This morning, I had those “bad thoughts” again, and still have them, along with fear of everything on a constant basis.
  But I guess what I’m trying to say is that I am listening to the others on here a little more than I use to.  16 months unfortunately is not that long for someone that took a high dose for 21 years.  I want to feel better and happier, but right now I don’t. IMO try and give it a little more time.  Not what either you or I want to hear, but maybe there is a positive change ahead?  Please feel free to contact me if you want to chat more!

[[Ic...]]

1 hour ago, [[G...] said:

@[Ic...] I am at a little over 16 months and I can only tell you what I have experienced.  I noticed some improvements at times over the past year, but for the past few weeks life has been tough, and my symptoms feel like Day 1 again.  There have been multiple times over the past 16 months when all I wanted to do was go back to the doctor, get a script, and go back to some sense of calm. It’s difficult for me at times to comprehend why I haven’t gone back and picked up that script!
   I have to remind myself that the pills weren’t working in the end.  Early in 2023, I was calling 911 with “bad thoughts”, and sleeping my days away.  
    Im still in a bad spot, but IMO going back to the pills probably would end up with me worse off than before.  Trust me, this life sucks right now.  This morning, I had those “bad thoughts” again, and still have them, along with fear of everything on a constant basis.
  But I guess what I’m trying to say is that I am listening to the others on here a little more than I use to.  16 months unfortunately is not that long for someone that took a high dose for 21 years.  I want to feel better and happier, but right now I don’t. IMO try and give it a little more time.  Not what either you or I want to hear, but maybe there is a positive change ahead?  Please feel free to contact me if you want to chat more!

This was a good read thank you.

 

Have you identified any triggers or patterns? Foods to avoid? Substances or liquids?

[[Go...]]

@[Ic...]  The one thing that does come to mind is that I started walking last year.  There is a park across the street and I try to get there a few days a week.  Sometimes I’m scared.  Actually every time I’m scared! In fact, this past week my fear and anxiety have been bad, and I’m scared to walk the back stretch of the path because it’s farther away from the street and houses.  So I changed my route up a little bit.  Agoraphobia is something I never looked up by definition until lately, and unfortunately I fit into a number of the characteristics.  
   But I also had these problems on Klonopin; I just had a crutch that ended up not working very well in the end.  
   So keep trying.  You and I are in the same time frame so it’s helping me if you stick around. I need to keep checking in with you!

Edited June 12 by [Go...]
Addition

[[Bu...]]

Hi @[Ic...],

You mentioned about not leaving the house without food.  I am in that spot too.  It seems that I often can't tell when I'm hungry and then all of a sudden my blood sugar bottoms out and I need to eat immediately.  It's very frustrating but I think I've come across other people in the same boat.  I also have food sensitivities and have a somewhat restricted diet.

I also understand the sudden feelings of agitation and fear over small things.  I got smacked with it yesterday when I saw that there were dirty dishes in the sink that needed washing.  Today it was seeing that the fridge needed to be cleaned out.   I don't have any great answers for it other than time, but I wanted to let you know you're not alone. 

[[Co...]]

14 hours ago, [[I...] said:

Thanks so much.

Can I ask, does the ability to go into a wave just diminish? Does the brain re open enough GABA receptors where if I miss a meal or eat a gummy bear, I simply wont get sick?

How does it know how to do this? It must be correcting for a new homeostatic state at all times?

GABA receptors readjust to the absence of benzodiazepine over time. For our members, this typically takes some or many months, is gradual, and often has ups and downs (windows and waves, if you like).

We do not know enough about the brain and GABA receptors in particular. We do not even know if GABA receptors completely return to their previous state for all people upon cessation. But as you imply, the brain is tends towards rebalancing itself given enough time.

I suspect that my brain is not quite the same as it was pre-benzodiazepines. The way small amounts of alcohol (a drink or two), if ingested fairly regularly (every few weeks), leads to me feeling more and more unwell and is suggestive that my GABA system does not operate quite as it once did. But the key point being that even if things are not quite the same, our brains can adapt and rebalance. And again and again, members report eventually leading normal lives after a difficult or even protracted withdrawal.

[[Si...]]

Hello! we are in the same boat ! my last dose was also 10th may 2023 exact!

Am also struggling although past 2 weeks have been better. sorry cant write anymore right now. gotto go

[[Ic...]]

11 hours ago, [[B...] said:

Hi @[Ic...],

You mentioned about not leaving the house without food.  I am in that spot too.  It seems that I often can't tell when I'm hungry and then all of a sudden my blood sugar bottoms out and I need to eat immediately.  It's very frustrating but I think I've come across other people in the same boat.  I also have food sensitivities and have a somewhat restricted diet.

I also understand the sudden feelings of agitation and fear over small things.  I got smacked with it yesterday when I saw that there were dirty dishes in the sink that needed washing.  Today it was seeing that the fridge needed to be cleaned out.   I don't have any great answers for it other than time, but I wanted to let you know you're not alone. 

This really made my morning. I think you totally get it then. Ive had the same experience with the dishes and the sink, and the bathtub, and the q-tips that need to be filled up, and the floors that need to be vacuumed. It hits me in the face and it’s so overwhelming. 

Can I ask how long it’s been since your last pill? Are you entirely off?

[[Bu...]]

@[Ic...],

I've been off clonazepam for nearly 10 months.  For me the overwhelming-life-stuff hit about 6-ish weeks ago.  I think.  My memory is very fuzzy.  Go figure. 

Today I'm staring down piles of laundry and a bathroom that needs cleaning.  I can hear the music to high-noon playing in my head.  We'll see who wins the show-down today... 

I hope you don't mind the joke.  It helps me cope a bit to try to make light of it a little.

Oh, and I have granola bars and little baggies of pecans in my purse, just in case.  And a bottle of water.  It's getting heavy, but it makes me feel better for now.  

[[Cr...]]

21 minutes ago, [[B...] said:

I hope you don't mind the joke.  It helps me cope a bit to try to make light of it a little.

Humor has always been my goto coping mechanism. Reduces fear and may invoke a genuine laugh. You are good in my book 

Good luck on your battle with laundry. If it wins you can always have a rematch tomorrow. Laundry is known to cheat or use unfair tactics (growing by the day), so no worries.

[[Bu...]]

14 minutes ago, [[C...] said:

Good luck on your battle with laundry. If it wins you can always have a rematch tomorrow. Laundry is known to cheat or use unfair tactics (growing by the day), so no worries.

I think it creeps about as well.  I don't remember the second, small pile of towels that's in the corner of the bathroom today.  I guess it could be my memory, but I don't know...

[[Cr...]]

48 minutes ago, [[B...] said:

I think it creeps about as well.  I don't remember the second, small pile of towels that's in the corner of the bathroom today.  I guess it could be my memory, but I don't know...

Well there's your problem! You are a one-use towel person! Don't forget that towels are drying off a clean person after a shower. 

Assuming you didn't floss your caboose with it you could hang it back up and it should be dry again for next the shower. Then wash it once a week to prevent mildew.

Good for your laundry load size and also uses less electricity and water. Now all I need is some environmental mascot to come in here and back me up with a 'Save the Planet' catchphrase 

P.s. sorry to @[Ic...] for sidetracking your thread with talks of laundry and mental images of butt flossing.

Edited June 13 by [Cr...]