The Long Hold Support Group

[[...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

[[Al...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

 

Miyu,

 

I truly hope this works for you!

 

I look forward in time to reading of positive results.

 

Peace & Healing

 

 

 

ATU 🙏🏻

[[be...]]

MiYu same thoughts as ATU. Will you wean off of Valium as you introduce the other medication? Sometimes just making the decision takes much stress off of one, you are due for some wellness. We will be here for you.

[[...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

 

Miyu,

 

I truly hope this works for you!

 

I look forward in time to reading of positive results.

 

Peace & Healing

 

 

 

ATU 🙏🏻

 

Thanks ATU ..... One think I can say is I've learnt so much this last year about tapering and holding , so I'm in a whole different place than I was even though dose wise I'll be back to square one .

 

Hope you're doing ok ,

MiYu 

[[...]]

MiYu same thoughts as ATU. Will you wean off of Valium as you introduce the other medication? Sometimes just making the decision takes much stress off of one, you are due for some wellness. We will be here for you.

 

thanks Begood 

You know , I don't know ... It seems like it would be wise to do a slow cross but we didn't discuss it . I don't know how it works going from a long half life to a shorter half life ..... I've made a call to the doc to see what he says . Maybe a small updose would be wise on the K to make the switch ....I don't want to spend a whole lot more time on the V tho.

 

Love , MiYu 

[[be...]]

MiYu same thoughts as ATU. Will you wean off of Valium as you introduce the other medication? Sometimes just making the decision takes much stress off of one, you are due for some wellness. We will be here for you.

 

thanks Begood 

You know , I don't know ... It seems like it would be wise to do a slow cross but we didn't discuss it . I don't know how it works going from a long half life to a shorter half life ..... I've made a call to the doc to see what he says . Maybe a small updose would be wise on the K to make the switch ....I don't want to spend a whole lot more time on the V tho.

 

Love , MiYu 

I don't know either, but glad that you have a chance to try something.

[[Se...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

 

Wish you all the best. You really deserve a break. I hope you get some relief from the change.

 

Take care.

[[Su...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

Congrats on a decision MiYu.   You sure gave Valium a try and i know this past while has been super tough.  You know this move is right for you ..

So happy for you with all of this

:smitten:

SS

[[Va...]]

Well buddies .... A decision has been made ..... I'm going back to klonopin !

I don't know if it's then rigth choice , but it's a decision , and one I feel good about. I've been in withdrawal pretty much continuously for a year now , even with my slow taper , and it's time to try something different.

I would have hung in with the V if I didn't feel so so sick every dose I take now,and  the sedation is really getting to me , plus the burning pain and  blurry vision which all get worse when I take it  ....

I need a break ..... I have no idea if this will work , but praying it will .

 

Even just emotionally to feel better for a little while would make such a huge difference.

 

So , I'll still be here as I don't plan on making any cuts for a while , and I just hope I can get stable .

 

Scared but hopeful ,

MiYu  :smitten:

So good to see you moving forward MiYU! 

[[Va...]]

Good morning

As always I have a dilemma.  I went to my PCP this morning who is handling my taper.  I'm having extreme fatigue....dizziness....no motivation....little sleep....and tons of anxiety.  We talked about a Valium crossover but he only wanted to put me on 15 mg of V and then completely stop the Ativan....said I'd be too sedated otherwise.....not the correct conversion or the right way to cross over...not gradually.  I'm basically not functioning...just a shower and a chore .  Driving is really hard.

So he said just take more Valium at night.....I came home frustrated cause I don't think that's the answer either....I have a chronic pain condition that hates stress and this taper is all stress. Ativan is not working anymore to calm me .....it just keeps withdrawals at bay.

 

I know you have told me to hold but the Ativan is not effective

 

Does anyone have direction for me.  THANKS

HS

Hi Healing. When I look at your taper, I notice you are reducing both the Ativan and the Valium and wonder if that's what is making it more difficult? Typically the valium would be left alone until the Ativan taper is finished so that it covers the interdose withdrawals. I'm sorry about your pain condition. It is something I understand very well and was the reason I was put on valium.  --V

[[He...]]

Good luck MiYu! At this point in time, after all your difficulties, I believe you are making a wise decision.

All power to you! May this be your saving grace! But go slow, Miyu, go slow!

Praying it works fir you! And I have a feeling it will!

 

Heath

[[sl...]]

MiYu same thoughts as ATU. Will you wean off of Valium as you introduce the other medication? Sometimes just making the decision takes much stress off of one, you are due for some wellness. We will be here for you.

 

thanks Begood 

You know , I don't know ... It seems like it would be wise to do a slow cross but we didn't discuss it . I don't know how it works going from a long half life to a shorter half life ..... I've made a call to the doc to see what he says . Maybe a small updose would be wise on the K to make the switch ....I don't want to spend a whole lot more time on the V tho.

 

Love , MiYu 

Really hope this works for you MiYu

I can understand you not liking Valium.

It doesn't suite everyone it seems.

I hate it as well.

Just go slowly and hope you get a break soon.

xSlowly 

[[sl...]]

Thanks everyone for your thoughts and encouragement... You're the best 

 

HS , I'm sorry things are so hard , I understand. ! I wish I had an answer for you ... A new doctor I think? Crossing over suddenly could be very hard , and I think you are rigth the conversion is not enough Valium .  If you can get another doctor who understands that would be best.

 

That was my feeling when I first read HS's post.

It seems that doctors who understand are very rare and  I think that HS is happy with her doc and knows him well, which is why I didn't chime in.

Hope the crossover works for you HS.

Good luck, thinking of you

[[He...]]

Good job with your decision MiYu.....my prayers are with you that you stabilize quickly.....I don't like Valium either.  Keep us in the loop with your progress.❤️

HS

[[He...]]

Good morning all....so my husband says I have too many cooks in the kitchen....but I just got back from my neurologist who handles my CRPS( chronic pain in my legs) .... he also consults with my PCP....... here it comes....he told me to hold my dose until I can get back into life again.  He told me my brain would adapt and I needed to be me again so I could deal with the chronic pain.  He didn't say to quit tapering but to hold and slowly force myself to be me again.  He told me that my family needed me.  First time I cried real tears in a long time.  And I'm not crossing over to Valium.  So this is my plan.  I think my granddaughters soccer starts Saturday.  I'm grateful to all of you.❤️

HS

[[fr...]]

  HS,  So glad you have an understanding Dr.  It makes so much difference.  MiYu, glad you have a plan and I sure do hope it works out with the K switchover.  I tried to switch back to Ativan but it didnt go well.  I hate the valium, it all went downhill from there.  I'm too scared to make anymore changes, i have tried so many.  I took gabapentin, 200mg. on Monday, I was in agony with the burning and it made it worse again. I never learn.  My drs. don't know what to tell me so I don't say too much because I'm scared they will get nervous and try to send me to Rehab.  So far they are both understanding.  Anyway, just wanted to say I'm glad you both have plans and I pray it goes well and you get relief.  I would take arsenic at this point to have one day of less burning.  :'(

[[He...]]

Freeme

I understand the burning.....that's what CRPS is all about.  It's a glitch in the brain.  I had minor knee meniscus surgery 11 years ago....the pain never gets switched off and it then spreads to other parts of your body.....so I have the burning 24/7 from the waist down...they tell me to just keep moving or I'll lose my legs.  Gabapentin takes the edge off....but doesn't really help anymore.....but if I stop taking it....so I guess it's helping.  This  will never go away....so I understand that it wears on you.  It just wears you out...they tell me to just keep moving and distraction......I did well until I started the taper.  Stress is terrible for CRPS. 

 

Take the gabapentin and see if you can get it up to levels in your blood to get some relief...wishing you well

HS

 

[[ly...]]

Good morning all....so my husband says I have too many cooks in the kitchen....but I just got back from my neurologist who handles my CRPS( chronic pain in my legs) .... he also consults with my PCP....... here it comes....he told me to hold my dose until I can get back into life again.  He told me my brain would adapt and I needed to be me again so I could deal with the chronic pain.  He didn't say to quit tapering but to hold and slowly force myself to be me again.  He told me that my family needed me.  First time I cried real tears in a long time.  And I'm not crossing over to Valium.  So this is my plan.  I think my granddaughters soccer starts Saturday.  I'm grateful to all of you.❤️

HS

 

This is just great HS!  Get "you" back, feel well for a while so you can regroup and heal more... and then taper very slowly.  Sounds like a very good plan.

[[Su...]]

Good morning all....so my husband says I have too many cooks in the kitchen....but I just got back from my neurologist who handles my CRPS( chronic pain in my legs) .... he also consults with my PCP....... here it comes....he told me to hold my dose until I can get back into life again.  He told me my brain would adapt and I needed to be me again so I could deal with the chronic pain.  He didn't say to quit tapering but to hold and slowly force myself to be me again.  He told me that my family needed me.  First time I cried real tears in a long time.  And I'm not crossing over to Valium.  So this is my plan.  I think my granddaughters soccer starts Saturday.  I'm grateful to all of you.❤️

HS

Yes to holding and getting some of you back!  And to not making any changes at the moment, don't hurry to up that Valium I say!  Congrats on all of this HS.  And to the healing power of real tears....

I imagine it feels good to be validated by the neurologist to stay the course....

:smitten:

SS

[[fr...]]

  My cousin has CRPS and is wheelchair bound.  Can get to bathroom on his own barely but needs help with all else.  He keeps telling me he thinks I might have this.  I have to have the EMG nerve tests done but scared of that.  My feet and legs burn, also hands and lower  arms now and other areas on and off.  This all happened after my 3rd back surgery so who knows.  I am so weak now I can barely make it to the Dr.  Major pain and they will  not increase pain meds.  They are all scared of gov't taking their licenses.  OH well, I try to do the best I can, not complain [too much] and make it day to day but living like this is not living.  Good luck to you, hope your pain lessens.  I am too scared of the gaba, it worsens the burning at low doses for me.  I took it 5 days twice and was horrible. 

[[He...]]

Thanks you guys...it was the most intense doctors appointment Ive ever been to...he's been my doc for 11 years....knows me well....it was like he was reading my mind.....told me I was pissed off and was giving up.....before the taper...I was his best CRPS patient....but the Ativan stopped working and anxiety is terrible for this disease.  I was stuck.  He told me I have to take my life back.  I went to the pharmacy today...it's a start. And my husband of 41 years...is awesome...sorry just emotional today.

HS

[[He...]]

Freeme

An EMG won't necessarily confirm the diagnosis.  I went to pain management in the beginning.....things they tried were barbaric.....this neurologist was a God send.

There are many variations of the disease...the wheel chair part of this scares me...gotta keep moving..I used to do pool aquatic therapy.....but it got too painful. 

 

Google G Lorimar Mosley....he's doing cutting edge stuff with pain...he's an Aussie...there's stuff on YouTube....he's very funny.  Before the taper I went to a physical therapist who follows his protocols.

He and David Butler wrote an excellent book called " Explain Pain" and the explain pain handbook...I got both of them on Amazon.  Highly recommend

 

If you think you have this illness.....movement although impossible is key.....you don't want to lose function....  you may PM me anytime....I may not always cope well with this but I know a lot about it.

 

My physical therapist says this pain has no value to me.....hard to do....but it's what is necessary.  I'm here if you need me.  Do you have swelling?  Discoloration?  Sensitive to cold?  Rain?

 

Check it out....there's also some very scary stuff out there.  But the RSDSA ASSOCIATION is the most credible resource. 

 

❤️❤️❤️❤️HS

[[Se...]]

  My cousin has CRPS and is wheelchair bound.  Can get to bathroom on his own barely but needs help with all else.  He keeps telling me he thinks I might have this.  I have to have the EMG nerve tests done but scared of that.  My feet and legs burn, also hands and lower  arms now and other areas on and off.  This all happened after my 3rd back surgery so who knows.  I am so weak now I can barely make it to the Dr.  Major pain and they will  not increase pain meds.  They are all scared of gov't taking their licenses.  OH well, I try to do the best I can, not complain [too much] and make it day to day but living like this is not living.  Good luck to you, hope your pain lessens.  I am too scared of the gaba, it worsens the burning at low doses for me.  I took it 5 days twice and was horrible.

 

Last year the pain medicine folks wanted me to try gabapentine. I took the prescribed 100mg  a couple of hours before I went to bed. I felt it a little. It definitely made me a little sleepy. At about 2am, I woke up in stark terror. Major anxiety. Major burning across the shoulders and neck. Took about a week before it settled down. Never tried that again. You're not alone on that one.

[[fr...]]

  HS,, No I don't have sensitivity to cold or hot, no discoloration. NO swelling either.  JUst the burning neuropathy.  Sometimes in the morning I have a reddish rashy looking on my arms but it goes away.  Weather doesn't seem to bother me, I hurt all the time.  I have already lost lots of function, am very weak.  I still can shower etc. and go up and down stairs but spend all my time on couch or bed now.  Pain is too bad in feet to walk much.  I just don't know what to do and don't wan to  hijack thread so I will PM if I need to for now.  Thanks for the info though.  Much appreciated. 

[[He...]]

freeme

It's a tough one to diagnose.......could be from the taper....perhaps you need to get it checked out.

I have all of those things besides the burning...let's hope it's not CRPS.....

Thinking about you as I take my walk in the rain.....cause pain has no value to me...yea right

❤️HS