The Long Hold Support Group

[[ba...]]

Benzo brain. working on my daily journey of what kind of fun I am experiencing. I usually have a lot of parasthesia, today, it's heightened anxiety and agitation, hyper without direction. I can't remember what that is called, and can't focus my thoughts well enough to look it up. Kinesthisiology? No, someone help me out.

[[Pl...]]

Benzo brain. working on my daily journey of what kind of fun I am experiencing. I usually have a lot of parasthesia, today, it's heightened anxiety and agitation, hyper without direction. I can't remember what that is called, and can't focus my thoughts well enough to look it up. Kinesthisiology? No, someone help me out.

 

Do you mean akasthesia?

[[ba...]]

Yes. Just remembered it and was coming in here to delete my post. Is akasthesia the same as heightened anxiety? I think I am just amped with increased anxiety and panic, which makes me very agitated. I don't think this is true akasthesia.I am hyper, but not moving much, because of vestibular and ocular issues, I am more frozen.

 

Just in a wave.

[[Pl...]]

Yes. Just remembered it and was coming in here to delete my post. Is akasthesia the same as heightened anxiety? I think I am just amped with increased anxiety and panic, which makes me very agitated. I don't think this is true akasthesia.I am hyper, but not moving much, because of vestibular and ocular issues, I am more frozen.

 

Just in a wave.

I think so..... I am the same way .... I don't move much either except my legs won't stop bouncing up and down....it is mostly an internal Physical agitation feeling for me except for the legs....  It is really pure hell for me....feels like so much adrenaline pouring in me but too weak to get up and down like really move ( except like I said the legs)

 

I also forgot to mention that I have internal vibrating tremors and breathlessness which also contributes significantly... Don't know how to make it go away.....

 

I hope you are hanging in.... I'm in a petrified state again....

[[ba...]]

Yes. Just remembered it and was coming in here to delete my post. Is akasthesia the same as heightened anxiety? I think I am just amped with increased anxiety and panic, which makes me very agitated. I don't think this is true akasthesia.I am hyper, but not moving much, because of vestibular and ocular issues, I am more frozen.

 

Just in a wave.

I think so..... I am the same way .... I don't move much either except my legs won't stop bouncing up and down....it is mostly an internal Physical agitation feeling for me except for the legs....  It is really pure hell for me....feels like so much adrenaline pouring in me but too weak to get up and down like really move ( except like I said the legs)

 

Nailed. I am bracing myself for some real difficulty as this is accelerating. O boy, fun times.

[[ga...]]

Well, I was looking at birthday cards and something caught my eye. It seemed perfect for everybody on this thread who is feeling poorly.

So, Dear Long Hold Group, this is for you!

 

http://jgardnerscollection.weebly.com/uploads/5/6/6/2/56621493/dscn2321_orig.jpg

 

http://jgardnerscollection.weebly.com/uploads/5/6/6/2/56621493/dscn2323-1_orig.jpg

 

 

[[Va...]]

Well, I was looking at birthday cards and something caught my eye. It seemed perfect for everybody on this thread who is feeling poorly.

So, Dear Long Hold Group, this is for you!

 

http://jgardnerscollection.weebly.com/uploads/5/6/6/2/56621493/dscn2321_orig.jpg

 

http://jgardnerscollection.weebly.com/uploads/5/6/6/2/56621493/dscn2323-1_orig.jpg

Perfect! LOL. 

[[li...]]

I've had akathisia and yours sounds more like parenthesia. Akathisia is more mental. It is a horrid relentless brain sensation that you have to keep moving to get rid of this horrific "I can't stop moving" thought. It is way beyond adrenaline type anxiety. It is like your brain is a turntable and something is constantly moving the needle back and forth across the vinyl record that is your brain and the only way you think it can go away is by pacing around 24/7. I've had it and think it is the most insidious of all Benzo withdrawal symptoms. I would pace all day long even when I was so physically weak and sick-i don't know how I survived. Only by the grace of God. I remember one day helping my daughter who was in 8th grade at the time with a history project and I couldn't help her for more than ten seconds at a time--my brain wouldn't let me stop pacing. I was in no way in control of what was happening. My husband came home one day and sat and watched me pace for hours and hours just crying not knowing how to help. PTSD from those experiences still several years later

[[ba...]]

I've had akathisia and yours sounds more like parenthesia. Akathisia is more mental. It is a horrid relentless brain sensation that you have to keep moving to get rid of this horrific "I can't stop moving" thought. It is way beyond adrenaline type anxiety. It is like your brain is a turntable and something is constantly moving the needle back and forth across the vinyl record that is your brain and the only way you think it can go away is by pacing around 24/7. I've had it and think it is the most insidious of all Benzo withdrawal symptoms. I would pace all day long even when I was so physically weak and sick-i don't know how I survived. Only by the grace of God. I remember one day helping my daughter who was in 8th grade at the time with a history project and I couldn't help her for more than ten seconds at a time--my brain wouldn't let me stop pacing. I was in no way in control of what was happening. My husband came home one day and sat and watched me pace for hours and hours just crying not knowing how to help. PTSD from those experiences still several years later

 

Thanks for that. The hyper, chest pain, racing thoughts, frozen experience feels more like too much adrenaline. It can lead to panic, and it often feels like I am going to panic, so I do my best to calm my thoughts. It is more physical, not so mental. Although, i often am very agitated and restless.

 

I thought parasthesia was the pins and needles and burning sensation that I know is nerve pain, mostly in my face and arms.

 

Thanks for helping me straighten that out. If I know scientifically what is happening, it helps me deal with it better,

 

Am still wondering about the initial question, why do some of us experience worse symptoms after a dose, and those symptoms do not feel like rebound or interdose w/d? That one is quite bad. And, it continues through the life of the dose.

 

Thanks for helping me be better informed.

[[no...]]

I've had akathisia and yours sounds more like parenthesia. Akathisia is more mental. It is a horrid relentless brain sensation that you have to keep moving to get rid of this horrific "I can't stop moving" thought. It is way beyond adrenaline type anxiety. It is like your brain is a turntable and something is constantly moving the needle back and forth across the vinyl record that is your brain and the only way you think it can go away is by pacing around 24/7. I've had it and think it is the most insidious of all Benzo withdrawal symptoms. I would pace all day long even when I was so physically weak and sick-i don't know how I survived. Only by the grace of God. I remember one day helping my daughter who was in 8th grade at the time with a history project and I couldn't help her for more than ten seconds at a time--my brain wouldn't let me stop pacing. I was in no way in control of what was happening. My husband came home one day and sat and watched me pace for hours and hours just crying not knowing how to help. PTSD from those experiences still several years later

 

Thanks for that. The hyper, chest pain, racing thoughts, frozen experience feels more like too much adrenaline. It can lead to panic, and it often feels like I am going to panic, so I do my best to calm my thoughts. It is more physical, not so mental. Although, i often am very agitated and restless.

 

I thought paraesthesia was the pins and needles and burning sensation that I know is nerve pain, mostly in my face and arms.

 

Thanks for helping me straighten that out. If I know scientifically what is happening, it helps me deal with it better,

 

Am still wondering about the initial question, why do some of us experience worse symptoms after a dose, and those symptoms do not feel like rebound or interdose w/d? That one is quite bad. And, it continues through the life of the dose.

 

Thanks for helping me be better informed.

Hi BD  Your correct about paraesthesia, I've had that really bad for ages, its hell    I also get transient Akathisia, like Liza said it comes with everything else that's hitting you at the same time 

 

paraesthesia https://en.wikipedia.org/wiki/Paresthesia

 

 

 

Love Nova xxx  :smitten:

[[ba...]]

TY Nova and others.

 

As Alanis Morisette says, I have one more stupid question (ha!)

 

I made my taper completely consistent as to dose and spacing 4-5 days ago, am confident that will best serve my CNS.

 

Felt much better at the start, knew a crash would come, it did. Is my crash just the typical cycle of w/d? My alteration in dosing was not a jump up or down, but it was a change. Or, is my body adjusting to the change, or some of both?

 

Day 4, uh oh (was expecting this)

Day 5 (today) more uh oh.

 

Does anyone know how long the body takes to adjust when a change is made. The dose is (.25) higher total than what I was doing before. I was taking (1) mg 4 times a day, and bumping it with (.25)  2-4 times a day as I hit rebound, usually 3 times, so a total of (4.75-5 mg) a day. Dose 2 is the worst of the day, so sometimes I would bump it twice.  Bumping was inconsistent, so it seemed sensible to just make each dose the same.

 

I ended up at 5 mg about half the time anyway, so it isn't a significant change.

 

The reason I did this was CONSISTENCY. Same dose, each time, still on a 4 dose a day plan. The 4 doses work much better for me than previous tapers, where I cut the med down and took 5 doses. I always ended up bumping smaller doses, so my tally would rise. This way, I am getting the (1.25) mg I would end up taking during the course of a dose at once, not a (1) mg, then a bump when it got too intense. I never thought the bumps helped anyway.

 

I am so new, so I am not familiar with the typical waxing and waning pattern experienced when in hard withdraw. I do know the way I feel now is not as intense as it was 3 weeks ago.  I have yet to get a window, but have noticed a reduction in the overall severity of sxs. I get days where I can function, and even ride my bike, even though I still am dizzy, anxious, and really hit hard with parasthesia.

 

Thanks buddies!

[[Pl...]]

Thank you nova and lizagal for finally clearing that up even for me...... I was always wondering and you both explained everything so well....  (((.      )))))

[[ba...]]

I would be a complete basket case if I did not have the wisdom and validation of the many wise and helpful people in this group. Being in here makes a significant difference in my coping. With the guidance, experience and knowledge of those ahead of me, I don't feel like I am blindly and stupidly flailing through this. your input gives me confidence and hope.

 

Amazing, all of you (I am on an Alanis Morisette kick.)

[[Va...]]

TY Nova and others.

 

As Alanis Morisette says, I have one more stupid question (ha!)

 

I made my taper completely consistent as to dose and spacing 4-5 days ago, am confident that will best serve my CNS.

 

Felt much better at the start, knew a crash would come, it did. Is my crash just the typical cycle of w/d? My alteration in dosing was not a jump up or down, but it was a change. Or, is my body adjusting to the change, or some of both?

 

Day 4, uh oh (was expecting this)

Day 5 (today) more uh oh.

 

Does anyone know how long the body takes to adjust when a change is made. The dose is (.25) higher total than what I was doing before. I was taking (1) mg 4 times a day, and bumping it with (.25)  2-4 times a day as I hit rebound, usually 3 times, so a total of (4.75-5 mg) a day. Dose 2 is the worst of the day, so sometimes I would bump it twice.  Bumping was inconsistent, so it seemed sensible to just make each dose the same.

 

I ended up at 5 mg about half the time anyway, so it isn't a significant change.

 

The reason I did this was CONSISTENCY. Same dose, each time, still on a 4 dose a day plan. The 4 doses work much better for me than previous tapers, where I cut the med down and took 5 doses. I always ended up bumping smaller doses, so my tally would rise. This way, I am getting the (1.25) mg I would end up taking during the course of a dose at once, not a (1) mg, then a bump when it got too intense. I never thought the bumps helped anyway.

 

I am so new, so I am not familiar with the typical waxing and waning pattern experienced when in hard withdraw. I do know the way I feel now is not as intense as it was 3 weeks ago.  I have yet to get a window, but have noticed a reduction in the overall severity of sxs. I get days where I can function, and even ride my bike, even though I still am dizzy, anxious, and really hit hard with parasthesia.

 

Thanks buddies!

Hi BD. It will take about 2 weeks for your body to adjust to any changes (give or take). After that, it will take a little longer for sxs to subside. If I were you, I would continue to hold until the sxs are mostly gone or completely gone. The fact that they have reduced in severity is a good sign. Windows should start to come soon. The dizziness will go. It took 4 months for mine to completely resolve.  You're doing great!  --V

[[He...]]

OH MY GOSH!

My two month hold of Valium was over. (Actually, Shy of one week) I was not stable, but better. Had Windows. Still had side effects, but never was with out them ever since I began my taper back in January.

Thought I'd try a .01 micro taper.

Went from 1.25 to 1.23 over two days.

That's like hardly  any cut at all! Today after just two days and two teeny cuts I woke up feeling horrible parathesia.!

Parathesia is the only symptom that never goes away, never!  Except for my neck ache.

 

My symptoms are always worse in the morning.  I am just trying to distract myself. But do I continue to cut?

 

I had originally intended to cut .01 every day for five days to get me down to 1.20. Then hold for as long as necessary if my side effects ramped up.

 

But this bad side effect after just two tiny cuts has me baffled.

Maybe I should wait and see how I feel later in the day since it is only just noon in the USA.and I usually feel better in the late afternoon.

 

Should I go back to 1.25 and hold another month? Should I stay at 1.23 and hold?

 

My side efx constantly go up and down. I don't know what's going on anymore. After all, the nature of the beast IS SIDEFFECTS. So is it not so unusual to get side effects even at a tiny cut? Especially since I am at a very low dose? I find tapering now so much harder than at the beginning of my taper.

 

Did I jump the gun by cutting too soon. Or are these side effects to be expected?

 

Maybe two months was not a long enough hold?

 

I get conflicting suggestions . Some say go for it and cut. Some say hold longer. Just when I think I made up my mind to hold, another suggestion comes to just go for it and cut.

 

Why am I so weak? Why can't I make up my mind and stick to it?

I feel like I'm never going to get off of this stuff!

Help!

Any thoughts or suggestions?

[[li...]]

I'm a 4 3/4 months holding until I can function--walk, drive and work. So far I've been able to do a bit of work from home--except today is horrendous--I keep hearing to wait not until you're no longer deteriorating, but that you're actually fairly functional for a couple months. Still wondering if and when I'll get there. I was cutting that small September to February Heathcliff and I crashed big time and have been holding since. 

[[sk...]]

Heathcliff, I know we've gone back and forth regarding long holds vs cut hold cut hold cut.... What you've got to understand first and foremost is that everyone here has different experiences.  That's why there's so many different opinions.  You've come a long ways from where you started back in Jan.  You've also been on a fairly low dose for 2 months.  Will holding help ease the symptoms... There's really no yes or no answer anyone can give you.  For some people the answer is yes, for others no.  It all depends on how the benzo is affecting you, and what it's doing inside your head/body.

 

My opinion... again, please don't take this the wrong way... but this is just how I feel, and how i'm doing my taper.  I've had some symptoms of some sort all the way down since day 1.  I held at 7.5mg for just over 3 weeks.  Maybe closer to 4.  The w/d symptoms were still present.  Finally said I want off this ride, and pressed forward.  I ask myself everyday 'why keep going if you feel 'ok'?  The answer is so I can get to zero.  This trip down from where I started has been hard as heck sometimes.  But everytime I cut a little, I get a powerful sense of 'you got this', and that gives me more power to keep going.  I'm now at 4.5mg, getting ready to cut another .5mg in the next day or so.  I'm still having my minor issues, but they will not get the best of me.  They have no power over me. 

 

That being said, could you be craving more of the drug since you're now at a lower dose?  Maybe.  Will holding longer help?  Maybe.  What if you're having a paradoxical effect to the benzo, and it's telling you 'its time'?  What if that small amount you're stuck at is actually what's causing the issues?  No one here knows for sure what the answer is.  All we can do is give opinions, and support whatever decision you make.  If you wanna hold longer at 1.25mg and try to get right... We'll support your decision and help you in whatever way we can.  If you wanna press forward, we will support that decision too.  The decision is yours and yours alone.  We are here for you.

 

One last parting opinion before I post this... If I was suffering as much as you are at that dose, i'd jump.  I'd jump and not look back.  Reason for that opinion, because in my case, I'd live.  I'd probably have to have w/d after for however long, but i'd just get it over with instead of suffering for that many months, just trying to get stable.... wondering if it's because of to low of a dose, or not enough.  I'd know I was at zero at that point, and the only place to go is up. 

 

We will back you up no matter what you pick.

[[li...]]

Skittles--are you still taking Remeron?  If so its not a level playing field with someone who is not.  So maybe you could clarify for Heathcliff.

[[Va...]]

OH MY GOSH!

My two month hold of Valium was over. (Actually, Shy of one week) I was not stable, but better. Had Windows. Still had side effects, but never was with out them ever since I began my taper back in January.

Thought I'd try a .01 micro taper.

Went from 1.25 to 1.23 over two days.

That's like hardly  any cut at all! Today after just two days and two teeny cuts I woke up feeling horrible parathesia.!

Parathesia is the only symptom that never goes away, never!  Except for my neck ache.

 

My symptoms are always worse in the morning.  I am just trying to distract myself. But do I continue to cut?

 

I had originally intended to cut .01 every day for five days to get me down to 1.20. Then hold for as long as necessary if my side effects ramped up.

 

But this bad side effect after just two tiny cuts has me baffled.

Maybe I should wait and see how I feel later in the day since it is only just noon in the USA.and I usually feel better in the late afternoon.

 

Should I go back to 1.25 and hold another month? Should I stay at 1.23 and hold?

 

My side efx constantly go up and down. I don't know what's going on anymore. After all, the nature of the beast IS SIDEFFECTS. So is it not so unusual to get side effects even at a tiny cut? Especially since I am at a very low dose? I find tapering now so much harder than at the beginning of my taper.

 

Did I jump the gun by cutting too soon. Or are these side effects to be expected?

 

Maybe two months was not a long enough hold?

 

I get conflicting suggestions . Some say go for it and cut. Some say hold longer. Just when I think I made up my mind to hold, another suggestion comes to just go for it and cut.

 

Why am I so weak? Why can't I make up my mind and stick to it?

I feel like I'm never going to get off of this stuff!

Help!

Any thoughts or suggestions?

Hi Heathcliff. I didn't really feel a lot better until 4 months. 2 months was still brutal for me.  All you can do is experiment with the hold (as long as it takes depending on how sensitized your CNS is) and wait for sxs to drop off. We advocate 3-6 months as a general amount of time to actually feel better. I'm at 6 months and have rid myself of all sxs and I was really in a bad way. Not being able to make up your mind is typical during a hold. Just set a time limit and remove temptation if you have to. That's the only way I kept myself from second guessing the process. Expect it to be rough at times, but sxs should start becoming more manageable with windows starting to open more often. I can honestly say the hold saved my life. Not telling you what to do but I do know if you're in a bad way, the only option is holding to stabilize.  --V

[[li...]]

As much as I whine, things have gotten better in my hold. But I was really messed up for a long time so I expect it to take me longer to stabilize. I went from screaming about my symptoms to crying to now just complaining. That's progress for me. And I can work from home again the last three weeks without being overwhelmed physically and mentally on the computer. Today I feel like hell because I used every ounce of GABA babysitting my granddaughter and was in 90 degree/90 percent humidity weather several times throughout the day

[[sk...]]

Skittles--are you still taking Remeron?  If so its not a level playing field with someone who is not.  So maybe you could clarify for Heathcliff.

 

I do believe I am taking Remeron... As it's in my signature... I also didn't know that we were playing a game... so why the need for a level playing field remark?  Is this supposed to be a support group, or a 'justification' group?  Aren't we supposed to lift each other up, and express opinions and things that work for each one of us?  Did you even read my post?

 

I also do believe HeathCliff is taking Remeron too... might want to clarify that though.

 

Valley Um, i'm confused by the last line of your statement to Heathcliff... You said something to the effect of 'the only option is to hold.'  Just by chance, I know you're on quite a larger dose than 1.25mg of Valium, but where anywhere in any published studies does it say that 'the only option is to hold'?  I'm seriously confused.  I thought another option would be 'talk to your doctor about your concerns and maybe they have an alternative to alleviate some of the gnarly symptoms you're having'.  Would that be a viable option?  Or maybe 'can you talk with your pharmacist to see if there are any supplements that can help you punch through the bad stuff'?  I'm sorry, but there are tons of other options.  Maybe dose 2 - 3 times a day and see if that helps... maybe be regular and dose once a day...  whatever the dosing schedule is, idk.  I've read so many times you almost spoon feeding long holds to everyone, when they are just scared, and could easily jump.  I'm NOT saying that's always been the case as I'M NOT A DOCTOR, but maybe you should 'support' people, and not push your agenda.  I've seen people try 'long holds' and it makes them worse!  Then all the sudden, they start a semi-quick taper, and BOOM!  Symptoms gone!  But during their 'long holds' they could never get stable.  Then they report back that they were having a paradoxical reaction to benzo's and they were better.  It's not a 1 time thing either.  There's not a 'one sized fits all' answer to tapering down off this stuff.

 

If this is truly a support group, lets actually support people.  Lets share options, opinions, and stop the fear mongering.  Stop scaring people into holds because truly there's TONS of options!  There's not ONLY ONE OPTION. 

[[ga...]]

lizagal, 

 

Gard

[[ga...]]

V, Thank you for your endless work and encouragement on this thread. I appreciate so much what you have been doing. It has helped me a great deal.

 

I'm going to be offline for awhile, but I wanted to say that before I left.

 

And I promise, I will not eat chicken soup while I'm gone. (Way too hot and humid for it. )

 

Gard

[[be...]]

lizagal, 

 

Gard

[glow=red,2,300]DITTO.Liza [/glow]

[[Do...]]

Skittles--are you still taking Remeron?  If so its not a level playing field with someone who is not.  So maybe you could clarify for Heathcliff.

 

I do believe I am taking Remeron... As it's in my signature... I also didn't know that we were playing a game... so why the need for a level playing field remark?  Is this supposed to be a support group, or a 'justification' group?  Aren't we supposed to lift each other up, and express opinions and things that work for each one of us?  Did you even read my post?

 

Valley Um, i'm confused by the last line of your statement to Heathcliff... You said something to the effect of 'the only option is to hold.'  Just by chance, I know you're on quite a larger dose than 1.25mg of Valium, but where anywhere in any published studies does it say that 'the only option is to hold'?  I'm seriously confused.  I thought another option would be 'talk to your doctor about your concerns and maybe they have an alternative to alleviate some of the gnarly symptoms you're having'.  Would that be a viable option?  Or maybe 'can you talk with your pharmacist to see if there are any supplements that can help you punch through the bad stuff'?  I'm sorry, but there are tons of other options.  Maybe dose 2 - 3 times a day and see if that helps... maybe be regular and dose once a day...  whatever the dosing schedule is, idk.  I've read so many times you almost spoon feeding long holds to everyone, when they are just scared, and could easily jump.  I'm NOT saying that's always been the case as I'M NOT A DOCTOR, but maybe you should 'support' people, and not push your agenda.  I've seen people try 'long holds' and it makes them worse!  Then all the sudden, they start a semi-quick taper, and BOOM!  Symptoms gone!  But during their 'long holds' they could never get stable.  Then they report back that they were having a paradoxical reaction to benzo's and they were better.  It's not a 1 time thing either.  There's not a 'one sized fits all' answer to tapering down off this stuff.

 

If this is truly a support group, lets actually support people.  Lets share options, opinions, and stop the fear mongering.  Stop scaring people into holds because truly there's TONS of options!  There's not ONLY ONE OPTION.

 

How dare you come to this thread and tell Valley to stop scaring people!!!!!!  He is one of the most caring, truly caring, people on this forum.  He has supported so many people. You've been on this forum since June?  The purpose of THIS thread is Long Holds.  If you don't believe in long holds, go to another thread!!  There is no written instructions that pertain to each person on this forum, everyone is just trying to get by in their own way.

 

You are way out of line with your post and really not supporting anyone!!!