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9 months off - lots of slooow progress


[Tr...]

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Hello all, I am 9 months off after a 3 year slow taper off of K. I was on K for about a decade. I crossed to V at ~3mg equivalent. It has been a wild ride. 
Some things are better, some things are about the same, and there are a few new (but not terribly distressing) things. 
 

What’s better:  (HURRAY)

I can take long hot showers standing up again! I was down to splash baths for about a year during my last few mg of V. 

I can walk a mile or so on good days and even have started jogging a bit! I used to do triathlons and the loss of the ability to run and ride has been so hard on my mental health. 

I can lay flat on my back when I stretch without dizziness! This has been a long road. I am a floaty boater and have had problems with balance for years (tolerance 3+ years and taper 3 years). I used to feel spinny anytime I laid down or sat up (even in bed). I used to have to sit on the edge of the bed for a minute before standing to get things to come together and hold still. This is gone (at least for the past few months). 

Floaty boat sensation now comes and goes - it’s not 24/7. I’ll take it. I get relief sometimes for days on end. I don't have the feeling like I’m walking on moss anymore. I had it for years off and on. I have gone with my family to fairs and short hikes on good days. 

Vision has improved! I finally made it to the eye doctor and my vision has improved by 1.0 diopter in each eye! I don’t need the zen vision bifocal lenses anymore. (I’m 46 years old)

I have driven my kids to sports practices a few times and seemed to do ok, pretty darn anxious, but I did it. Miles from where I was- not even able to ride along or tolerate the motion of car, much less sitting in public at a practice. 

I have an appetite again! I had to absolutely force food during the last year of tapering. Zero appetite. I lost so much weight it became concerning. 5’5” and 110 lbs with so much muscle loss. This brings me to….

I can lift gentle weights! I got resistance bands and super light dumbbells. Standing used to cause tachycardia, now I can do air squats and some arms workouts. I have to be careful, it’s easy to overdo it and get shaky and be back on the bed, but WEIGHTS!

I don’t spend all day in bed absolutely freaked out. I used to be in bed most of the day, listening to positive benzo affirmations (thanks Dave Powers) and Buddhist meditations. Now I stay downstairs with the kids and the TV and sounds all around. 

I can watch TV! For the last 8 months of taper and first 4-5 months off this was not possible. The motion really messed with my sense of where I was in space, if that makes sense. The camera panning quickly one way or the other made me feel like I was falling. And the sounds, awful. I watch shows with my family daily. 

I can listen to music! This came back slowly around month 4. It hit me like a ton of bricks, I heard a song I had always loved and I burst into tears. It floored me to feel something GOOD. I had felt nothing but awful fear for months on end. I still get overwhelmed easily, and loud fast music sets me off, but it’s progress.

I have been cooking more. I help make lunches for my kids, and myself. My husband had kept me alive with doing all of the cooking for a long time. So nice to be able to help. On good days I dig out recipes and make cakes and all kinds of fun stuff. 

Rib/chest pain has finally let up. Holy moley. The sternal and rib from front to back pain was incredible. I used to cry it hurt so bad. No amount of stretching or heat or massage helped. I used a Dr Bronners peppermint and menthol salve at night, and occasionally ibuprofen. This peaked in months 7-8. So so relieved to have it gone. 

Whats about the same:  (COME ON!)

-Still a lot of DPDR- almost daily, especially from 11:30am- 3pm. Nights it eases up. It’s the same feeling I had all through tolerance and taper. Kind of lost, kind of confused, kind of dizzy, light headed, sob, on bad days I feel like I’m suddenly about to die. It comes and goes.
- Tachycardia comes and goes, seems to have no pattern. Sometimes I get runs of it with palps and sweating. Maybe it’s hormones (again, I’m 46), maybe it’s my hypothalamus figuring stuff out. My goal is to be a neutral observer, sometimes that works, other times I panic. I never really had just runs of tachycardia when tapering. I had a big month of it 3 months out. I ended up getting a beta blocker, but was to freaked out to use it. 
- Jaw and head and neck pain are about the same. It comes and goes, sometimes pretty rough. 
- Eye lid spasm - freaking constant! Lower right lid, all day. Not painful, just annoying. Feels like it makes my vision bounce. 

What’s new:  (this process is so weird)

- Insomnia, centered around leg pain and feeling too hot and irritated. Lasted just over a week in month 8. I had started some B12- maybe that played a part, maybe hormones? I felt crazy. I’d sleep for 2-4 hours a night. Never had this during tolerance or taper.

- My legs, mid calf down feel like I have icy hot on them. It’s a constant fluxing warm to cold. This has lasted for months. Started month 6. Not awful, just constant. Let’s up for a few days here and there. 
- Tight tight throat muscles. This one is rough. It started high- near the back of my nose, then worked it’s way down over a few weeks. Now it’s pretty constant just behind my windpipe. It’s every darn day, worse if I’m anxious. Really throws fuel on the sob fire. I use warm packs sometimes to try to loosen it up. I do meditations with chanting (Kirtan kriya) and I hope this helps loosen it all up.

- Hot flashes with tachycardia at night. Started about month 5 and continues. I seem to wake up at 4 am just to have this symptom. 
 

————————

ALL IN ALL - definite progress! I started painting with watercolors, I push myself to go out more and sometimes even enjoy it. I am avidly learning German with Duolingo. I started learning to weave baskets using foraged plants from my neighborhood. (I’m that creep stealing daylily leaves at the park. But hey, at least I can walk there now.)

I’m nowhere near where I want to be, I have big long waves of depression that scare the heck out of me, occasional panic attacks, and I’m not anywhere near ready to work again. But progress is progress. 
 

Are there any other 9 (8-10 ish) month buddies out there? Please let me know where you are at. 

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Wow, congratulations! You've come a long way. They always say that recovery isn't linear and you're proof—old things have passed, new strengths and new symptoms have arrived. I think of it as a spiral; sometimes you're going forward, sometimes backwards but always upwards. 

I'm almost 12 months out. Like you I've had lots of improvements; I've even gotten to a place where I am just busy doing life and looking forward to doing things. I've been tapering mirtazepine and lamotrigine, which has tossed me back into a bit of a wave. As soon as I feel better I'm going to hold and let myself heal a lot more before resuming a taper, God willing!

Sounds like you have a great husband and a lovely busy life to sustain you and motivate you. I look forward to reading your success story!

Warmly,

HCHC

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8 hours ago, [[T...] said:

Hello all, I am 9 months off after a 3 year slow taper off of K. I was on K for about a decade. I crossed to V at ~3mg equivalent. It has been a wild ride. 
Some things are better, some things are about the same, and there are a few new (but not terribly distressing) things. 
 

What’s better:  (HURRAY)

I can take long hot showers standing up again! I was down to splash baths for about a year during my last few mg of V. 

I can walk a mile or so on good days and even have started jogging a bit! I used to do triathlons and the loss of the ability to run and ride has been so hard on my mental health. 

I can lay flat on my back when I stretch without dizziness! This has been a long road. I am a floaty boater and have had problems with balance for years (tolerance 3+ years and taper 3 years). I used to feel spinny anytime I laid down or sat up (even in bed). I used to have to sit on the edge of the bed for a minute before standing to get things to come together and hold still. This is gone (at least for the past few months). 

Floaty boat sensation now comes and goes - it’s not 24/7. I’ll take it. I get relief sometimes for days on end. I don't have the feeling like I’m walking on moss anymore. I had it for years off and on. I have gone with my family to fairs and short hikes on good days. 

Vision has improved! I finally made it to the eye doctor and my vision has improved by 1.0 diopter in each eye! I don’t need the zen vision bifocal lenses anymore. (I’m 46 years old)

I have driven my kids to sports practices a few times and seemed to do ok, pretty darn anxious, but I did it. Miles from where I was- not even able to ride along or tolerate the motion of car, much less sitting in public at a practice. 

I have an appetite again! I had to absolutely force food during the last year of tapering. Zero appetite. I lost so much weight it became concerning. 5’5” and 110 lbs with so much muscle loss. This brings me to….

I can lift gentle weights! I got resistance bands and super light dumbbells. Standing used to cause tachycardia, now I can do air squats and some arms workouts. I have to be careful, it’s easy to overdo it and get shaky and be back on the bed, but WEIGHTS!

I don’t spend all day in bed absolutely freaked out. I used to be in bed most of the day, listening to positive benzo affirmations (thanks Dave Powers) and Buddhist meditations. Now I stay downstairs with the kids and the TV and sounds all around. 

I can watch TV! For the last 8 months of taper and first 4-5 months off this was not possible. The motion really messed with my sense of where I was in space, if that makes sense. The camera panning quickly one way or the other made me feel like I was falling. And the sounds, awful. I watch shows with my family daily. 

I can listen to music! This came back slowly around month 4. It hit me like a ton of bricks, I heard a song I had always loved and I burst into tears. It floored me to feel something GOOD. I had felt nothing but awful fear for months on end. I still get overwhelmed easily, and loud fast music sets me off, but it’s progress.

I have been cooking more. I help make lunches for my kids, and myself. My husband had kept me alive with doing all of the cooking for a long time. So nice to be able to help. On good days I dig out recipes and make cakes and all kinds of fun stuff. 

Rib/chest pain has finally let up. Holy moley. The sternal and rib from front to back pain was incredible. I used to cry it hurt so bad. No amount of stretching or heat or massage helped. I used a Dr Bronners peppermint and menthol salve at night, and occasionally ibuprofen. This peaked in months 7-8. So so relieved to have it gone. 

Whats about the same:  (COME ON!)

-Still a lot of DPDR- almost daily, especially from 11:30am- 3pm. Nights it eases up. It’s the same feeling I had all through tolerance and taper. Kind of lost, kind of confused, kind of dizzy, light headed, sob, on bad days I feel like I’m suddenly about to die. It comes and goes.
- Tachycardia comes and goes, seems to have no pattern. Sometimes I get runs of it with palps and sweating. Maybe it’s hormones (again, I’m 46), maybe it’s my hypothalamus figuring stuff out. My goal is to be a neutral observer, sometimes that works, other times I panic. I never really had just runs of tachycardia when tapering. I had a big month of it 3 months out. I ended up getting a beta blocker, but was to freaked out to use it. 
- Jaw and head and neck pain are about the same. It comes and goes, sometimes pretty rough. 
- Eye lid spasm - freaking constant! Lower right lid, all day. Not painful, just annoying. Feels like it makes my vision bounce. 

What’s new:  (this process is so weird)

- Insomnia, centered around leg pain and feeling too hot and irritated. Lasted just over a week in month 8. I had started some B12- maybe that played a part, maybe hormones? I felt crazy. I’d sleep for 2-4 hours a night. Never had this during tolerance or taper.

- My legs, mid calf down feel like I have icy hot on them. It’s a constant fluxing warm to cold. This has lasted for months. Started month 6. Not awful, just constant. Let’s up for a few days here and there. 
- Tight tight throat muscles. This one is rough. It started high- near the back of my nose, then worked it’s way down over a few weeks. Now it’s pretty constant just behind my windpipe. It’s every darn day, worse if I’m anxious. Really throws fuel on the sob fire. I use warm packs sometimes to try to loosen it up. I do meditations with chanting (Kirtan kriya) and I hope this helps loosen it all up.

- Hot flashes with tachycardia at night. Started about month 5 and continues. I seem to wake up at 4 am just to have this symptom. 
 

————————

ALL IN ALL - definite progress! I started painting with watercolors, I push myself to go out more and sometimes even enjoy it. I am avidly learning German with Duolingo. I started learning to weave baskets using foraged plants from my neighborhood. (I’m that creep stealing daylily leaves at the park. But hey, at least I can walk there now.)

I’m nowhere near where I want to be, I have big long waves of depression that scare the heck out of me, occasional panic attacks, and I’m not anywhere near ready to work again. But progress is progress. 
 

Are there any other 9 (8-10 ish) month buddies out there? Please let me know where you are at. 

I think the fact that you are aware of your improvements and are writing them down in this topic is huge. Keep at it and more great things will come your way.

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Im at 7 months.  Some days I notice very, very small positive changes.  Then days like today, it all feels as bad, if not worse than before. 

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