The Long Hold Support Group

[[Ma...]]

I have some news! I ran an errand by myself today. If you count the bookstore a few weeks ago, that’s two. Now I’m exhausted, nauseous, heart pounding, dry eyes , and tinnitus but I got out of bed and off the couch. I feel like crap but a month ago, I couldn’t have done this. Baby steps! Time for a nap! There is hope! G

 

You are a marvel.  Get some rest, you deserve it!!  Mary 💜💜💜💜

Thanks Mary. I’m back in bed and not in great shape but proud of myself. I long to have my life back. I couldn’t do this without support. 💕❤️💕 G

 

Anyone trying as hard as you is always going to have all the support you need, always 

My family thinks I need rehab

 

Oh mercy, the taper you need would cost , easily 100k, 30 days would barely get you started, and you better have some damn good insurance just to pay for that.  I would say have them read the rehab horror stories on here but the last time I said have your hubby read, that didn't turn out so well 

I'm sorry you are getting pulled in all these directions.

Medicare. I’m devastated

 

I hope you can make them see how wrong rehab is, try.  And damn it Georgie, this is your taper, everybody is welcome to give their opinions (not) but it's your taper.

They miss me as much as I miss them. They live all over the country and I’m just not ready to travel. I got sick at Christmas and spent the entire time in bed. The steroids started when I got home in January and it’s been downhill ever since. Everyone is sad. They just want me back. They are searching for answers. I know rehab isn’t it. G

You are a smart loving woman 

[[Co...]]

I have some news! I ran an errand by myself today. If you count the bookstore a few weeks ago, that’s two. Now I’m exhausted, nauseous, heart pounding, dry eyes , and tinnitus but I got out of bed and off the couch. I feel like crap but a month ago, I couldn’t have done this. Baby steps! Time for a nap! There is hope! G

 

You are a marvel.  Get some rest, you deserve it!!  Mary 💜💜💜💜

Thanks Mary. I’m back in bed and not in great shape but proud of myself. I long to have my life back. I couldn’t do this without support. 💕❤️💕 G

 

Anyone trying as hard as you is always going to have all the support you need, always 

My family thinks I need rehab

 

Oh mercy, the taper you need would cost , easily 100k, 30 days would barely get you started, and you better have some damn good insurance just to pay for that.  I would say have them read the rehab horror stories on here but the last time I said have your hubby read, that didn't turn out so well 

I'm sorry you are getting pulled in all these directions.

Medicare. I’m devastated

 

I hope you can make them see how wrong rehab is, try.  And damn it Georgie, this is your taper, everybody is welcome to give their opinions (not) but it's your taper.

They miss me as much as I miss them. They live all over the country and I’m just not ready to travel. I got sick at Christmas and spent the entire time in bed. The steroids started when I got home in January and it’s been downhill ever since. Everyone is sad. They just want me back. They are searching for answers. I know rehab isn’t it. G

You are a smart loving woman 

😘😘

[[Co...]]

Okay, so I’m coming up on two months of holding. I’ve made some progress but it’s minimal. Still hold, right? G

[[Ma...]]

Okay, so I’m coming up on two months of holding. I’ve made some progress but it’s minimal. Still hold, right? G

 

Shoot for one more and if you still aren't showing much improvement, we will talk about a very slow micro taper, how's that, and maybe it will help with family concerns.  You have actually not done terrible, you mood is amazing, have gotten out of the house some.  You give a good 3 months, and then if you want to, we will start you down very slowly, slow enough that if your symptoms flare, we can hold you quick.  How does that sound?

[[Co...]]

Okay, so I’m coming up on two months of holding. I’ve made some progress but it’s minimal. Still hold, right? G

 

Shoot for one more and if you still aren't showing much improvement, we will talk about a very slow micro taper, how's that, and maybe it will help with family concerns.  You have actually not done terrible, you mood is amazing, have gotten out of the house some.  You give a good 3 months, and then if you want to, we will start you down very slowly, slow enough that if your symptoms flare, we can hold you quick.  How does that sound?

Perfect! Have no clue how to micro taper but I’m sure you’ll be here for me. Kissses

[[Tr...]]

Hello, shout out to friend bill. If you're reading along Bill on the sidelines can you answer a few questions for me. I think you can help me some with information on the heart stuff. I'd very much appreciate it.

 

Trish,

💞💞

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

[[Tr...]]

Hello to English, Irish, Georgie, Lil, Can't, Free and all the others whose names escape me bc I'm a stressed out mess, so forgive me on that.

 

Sending will wishes to all of you.

 

Trish 💞💞

[[Ma...]]

Okay, so I’m coming up on two months of holding. I’ve made some progress but it’s minimal. Still hold, right? G

 

Shoot for one more and if you still aren't showing much improvement, we will talk about a very slow micro taper, how's that, and maybe it will help with family concerns.  You have actually not done terrible, you mood is amazing, have gotten out of the house some.  You give a good 3 months, and then if you want to, we will start you down very slowly, slow enough that if your symptoms flare, we can hold you quick.  How does that sound?

Perfect! Have no clue how to micro taper but I’m sure you’ll be here for me. Kissses

 

Yes, I will 

[[Ma...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

[[Ma...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

[[Ma...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

I think maybe when I go to taper again in the future that I might try a very slow microtaper, maybe it is easier on the system 🤷

 

So last question about your palps, how often would you say that you feel them? Is it everyday or occasionally? I'm just trying to figure out how common these are among us benzo peeps

 

[[Ma...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

I think maybe when I go to taper again in the future that I might try a very slow microtaper, maybe it is easier on the system 🤷

 

So last question about your palps, how often would you say that you feel them? Is it everyday or occasionally? I'm just trying to figure out how common these are among us benzo peeps

 

2 or 3 x a week, I would guess :smitten:

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

I think maybe when I go to taper again in the future that I might try a very slow microtaper, maybe it is easier on the system 🤷

 

So last question about your palps, how often would you say that you feel them? Is it everyday or occasionally? I'm just trying to figure out how common these are among us benzo peeps

 

2 or 3 x a week, I would guess :smitten:

 

Oh ok not to bad then. I think they are the worst symtom I've had so far. I had these pre benzo days brought on by caffeine but now they are ridiculous ever since I hit 1 mg. I'm sure my anxiety and stress over them is making it worse but it's so hard to keep calm with all this going on. I've given up all caffeine and I'm so tired all day long. My therapist gave me some things to try to cope, I saw her this morning and I was in tears and made her tear up 😳  she really feels for me and the whole benzo thing. It really is quite a nightmare that we're all in isn't it 🤦 anyway, I'll probably jump back in more often bc isolating myself isn't making any of this easier. I get so paralyzed with fear that it makes me crawl inside of myself, it's like I lose all desire to join in life if that makes sense..

[[Ma...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

I think maybe when I go to taper again in the future that I might try a very slow microtaper, maybe it is easier on the system 🤷

 

So last question about your palps, how often would you say that you feel them? Is it everyday or occasionally? I'm just trying to figure out how common these are among us benzo peeps

 

2 or 3 x a week, I would guess :smitten:

 

Oh ok not to bad then. I think they are the worst symtom I've had so far. I had these pre benzo days brought on by caffeine but now they are ridiculous ever since I hit 1 mg. I'm sure my anxiety and stress over them is making it worse but it's so hard to keep calm with all this going on. I've given up all caffeine and I'm so tired all day long. My therapist gave me some things to try to cope, I saw her this morning and I was in tears and made her tear up 😳  she really feels for me and the whole benzo thing. It really is quite a nightmare that we're all in isn't it 🤦 anyway, I'll probably jump back in more often bc isolating myself isn't making any of this easier. I get so paralyzed with fear that it makes me crawl inside of myself, it's like I lose all desire to join in life if that makes sense..

 

Yes, I do and think you should come back.  I think isolating just naturally is part of it because so few people understand.  Only here is true understanding 💜💜💜💜💜

[[Tr...]]

Yoo hoo Mary,

I want to ask you if you ever had heart palps before the taper or during it. I wonder if a micro taper would help with the palps or in my case pvc's.. Oh I even hate the f***ing word. 😝

 

Trish,

Terrible TAPERER 💞💞

 

I didn't have heart palpitations until the taper, that's when I found out I had the genetic heart murmur.  What is a pvc Trishy?  I don't really know?  Good to see you 

Thanks D, good to see you too. A pvc is an irregular heart beat. It is sometimes described as a skipped beat sensation or a flip flop sensation in the chest. Unfortunately I feel them, some people don't. What were your palps like? Was it a fast heart rate? That would be called tachycardia.

 

They must be pretty close to the same thing, that is kind of what I feel too, it speeds up.  Tim just explained I have a valve that leaks a little bit, so when the Dr listens, there is a slight swoosh.  But it also skips a beat, or beats fast, but none of it lasts long.  I can usually take a couple slow breaths and it stops.  But I have to go every year now to get it checked or if my heart rate drops in the 40's, I have to make an appointment.  Hope that helps  :hug:

 

Yes, me too. I was blessed with a heart murmur as well along with mitral valve prolapse with mild regurgitation ( leaking or backflow of blood through the valve) . Do you feel your skipped beats still? I know you generally have a low heart rate bc of the beta blocker like me but my skips or pvc's as they call them are breaking through my atenelol. So you still experience them then? Or has it all lessened with the micro taper? I'm wondering if micro would be easier on the heart??

 

  :smitten:

I still feel mine but not for long  . Yes I do, you know I think cut and hold are hard on our systems  :P

I think maybe when I go to taper again in the future that I might try a very slow microtaper, maybe it is easier on the system 🤷

 

So last question about your palps, how often would you say that you feel them? Is it everyday or occasionally? I'm just trying to figure out how common these are among us benzo peeps

 

2 or 3 x a week, I would guess :smitten:

 

Oh ok not to bad then. I think they are the worst symtom I've had so far. I had these pre benzo days brought on by caffeine but now they are ridiculous ever since I hit 1 mg. I'm sure my anxiety and stress over them is making it worse but it's so hard to keep calm with all this going on. I've given up all caffeine and I'm so tired all day long. My therapist gave me some things to try to cope, I saw her this morning and I was in tears and made her tear up 😳  she really feels for me and the whole benzo thing. It really is quite a nightmare that we're all in isn't it 🤦 anyway, I'll probably jump back in more often bc isolating myself isn't making any of this easier. I get so paralyzed with fear that it makes me crawl inside of myself, it's like I lose all desire to join in life if that makes sense..

 

Yes, I do and think you should come back.  I think isolating just naturally is part of it because so few people understand.  Only here is true understanding 💜💜💜💜💜

Amen sister 😘

[[Tr...]]

Omg D,  fireworks going off all over my neighborhood. It'll be going on all weekend.

 

Happy 4th my American friend's! 🎇🎆🎇🎆🎆

[[Co...]]

Omg D,  fireworks going off all over my neighborhood. It'll be going on all weekend.

 

Happy 4th my American friend's! 🎇🎆🎇🎆🎆

Just jumped back online. Good to hear from you. I missed you❤️❤️❤️G

[[4G...]]

Happy Independence Day, my American friends!  🎇🎆🎊🎉🎊🎀🎊🎉

[[Tr...]]

Omg D,  fireworks going off all over my neighborhood. It'll be going on all weekend.

 

Happy 4th my American friend's! 🎇🎆🎇🎆🎆

Just jumped back online. Good to hear from you. I missed you❤️❤️❤️G

Thank you Georgie your sweet. I missed you too and all here. Just when I was getting to know you and Lil better all hell broke loose on me. I hope you're getting along ok. I have read some here silently but not much so I'm not caught up. Just did a little sporadic reading here and there.

 

:smitten:

[[Ma...]]

Happy Independence Day, my American friends!  🎇🎆🎊🎉🎊🎀🎊🎉

 

Thanks girlfriend  . 💋💋💋💋🐱🐾🐾🐾🐾 and Possey

[[Tr...]]

Happy Independence Day, my American friends!  🎇🎆🎊🎉🎊🎀🎊🎉

 

I think we have two celebrations here tomorrow .. a little bird told me you were 50 yrs young tomorrow