Updosing Support Group

[[Aj...]]

Thank you all!

[[NJ...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

 

I tapered from 1 mg of K to .5 mg of K in 2016. I tried several times to get lower and couldn't do it. I went back to .5 mg of K in September and am sitting here and doing mostly okay. I still have issues with my GI system but truly I am having the worst year of my life so I am sure that is a huge factor with the GI stuff. I think it is likely that many of your issues will resolve if you updose enough. I also had no tolerance WD issues--I thought I did but I really think I was just crashing after my dad died.

 

I have decided I cannot keep killing myself trying to get off. I would like to get off down the road but it cannot be right now. It sounds like you have been struggling for a while so hope you can find a way through.

 

NJ, how is your son, is there any new information?  Love, Mary 🌷🌼🐝🌻

 

Mary,

 

Thanks for asking after him. He has been on high dose of prednisone for two weeks and has seen very little improvement.

 

They upped his dose by 25 percent today. Prednisone is really a crutch--cannot be used long term. So we are hoping the increased dose kicks his appetite up and lessens the fatigue and heals the inflammation. Then we will begin to wean him off. But then what happens? We really don't have a plan as we still don't have a diagnosis. I think I am going to take him to a functional medicine doctor who might be able to help with supplements and LDN, which many people are using with good results for irritable bowel disease.

 

I am really struggling. We just moved my mom to a new nursing home and she doesn't like it. And I just got results from a mammogram with the "you need to come back ASAP for further screening." We have a family history of breast cancer. I know I shouldn't worry but this year has been a horror show and I have a bad feeling about this. I feel like every time I turn around it is something else that isn't good.  My coworkers in my new job just feel sorry for me for all I have been going through. Honestly, I just want to quit I am so tired but we cannot afford to have me stop working with one in college/the youngest in private school.

 

Keep hoping tomorrow will be better and one day it will be but right now hard to be optimistic. I also just fired my therapist of three years as she was not helping me at all with all the stuff going on with my son and it makes me uncomfortable having this much on my plate and no one to talk to. And my friends I feel have completely disappeared--too much doom and gloom I guess for everyone.

 

Hope you are doing okay.  And it means a lot that you asked about my son.

[[Ma...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

 

I tapered from 1 mg of K to .5 mg of K in 2016. I tried several times to get lower and couldn't do it. I went back to .5 mg of K in September and am sitting here and doing mostly okay. I still have issues with my GI system but truly I am having the worst year of my life so I am sure that is a huge factor with the GI stuff. I think it is likely that many of your issues will resolve if you updose enough. I also had no tolerance WD issues--I thought I did but I really think I was just crashing after my dad died.

 

I have decided I cannot keep killing myself trying to get off. I would like to get off down the road but it cannot be right now. It sounds like you have been struggling for a while so hope you can find a way through.

 

NJ, how is your son, is there any new information?  Love, Mary 🌷🌼🐝🌻

 

Mary,

 

Thanks for asking after him. He has been on high dose of prednisone for two weeks and has seen very little improvement.

 

They upped his dose by 25 percent today. Prednisone is really a crutch--cannot be used long term. So we are hoping the increased dose kicks his appetite up and lessens the fatigue and heals the inflammation. Then we will begin to wean him off. But then what happens? We really don't have a plan as we still don't have a diagnosis. I think I am going to take him to a functional medicine doctor who might be able to help with supplements and LDN, which many people are using with good results for irritable bowel disease.

 

I am really struggling. We just moved my mom to a new nursing home and she doesn't like it. And I just got results from a mammogram with the "you need to come back ASAP for further screening." We have a family history of breast cancer. I know I shouldn't worry but this year has been a horror show and I have a bad feeling about this. I feel like every time I turn around it is something else that isn't good.  My coworkers in my new job just feel sorry for me for all I have been going through. Honestly, I just want to quit I am so tired but we cannot afford to have me stop working with one in college/the youngest in private school.

 

Keep hoping tomorrow will be better and one day it will be but right now hard to be optimistic. I also just fired my therapist of three years as she was not helping me at all with all the stuff going on with my son and it makes me uncomfortable having this much on my plate and no one to talk to. And my friends I feel have completely disappeared--too much doom and gloom I guess for everyone.

 

Hope you are doing okay.  And it means a lot that you asked about my son.

 

Oh NJ, how are you managing, I honestly don't know how you do it.  I was called back in for a redo on a mammogram and it scared the crap out of me and I wasn't in wd or anything, so of course you are scared.  Does your mom have a reason not to like the new place or just doesn't like the change?  My heart just aches for you, truly.  You said the updose helped, did it help enough your sxs aren't too bad?  We all think of you and your son.  Lots of love , Mary 🙏🙏🙏🙏🙏🙏.  🌷🌷🌷🌷🌷

[[NJ...]]

The updose is keeping me somewhat stable. I am still having a lot of GI issues and some issues with depression. I am hesitant to go up further.

 

My mom I think is just overwhelmed knowing she will be in this nursing home until she passes. She has Parkinson's on top of her broken hip she is trying to recover from. It would be better if she could live with someone but she doesn't want to go live with her brother, there is absolutely no way I can take on that responsibility now, and my sisters also don't feel able to take her. It is a very "social" nursing home but my mom just wants to sit in her room all day and watch tv or read and not interact with anyone. I just need to get her settled there and then I need to take a step back and focus on the rest of my life. Also have a frozen shoulder that needs PT badly but I have had no time.

 

It just has been such a really, really hard few months. My son has been ill since September, it's just a long time. We are due for some good luck I hope.

[[Ma...]]

The updose is keeping me somewhat stable. I am still having a lot of GI issues and some issues with depression. I am hesitant to go up further.

 

My mom I think is just overwhelmed knowing she will be in this nursing home until she passes. She has Parkinson's on top of her broken hip she is trying to recover from. It would be better if she could live with someone but she doesn't want to go live with her brother, there is absolutely no way I can take on that responsibility now, and my sisters also don't feel able to take her. It is a very "social" nursing home but my mom just wants to sit in her room all day and watch tv or read and not interact with anyone. I just need to get her settled there and then I need to take a step back and focus on the rest of my life. Also have a frozen shoulder that needs PT badly but I have had no time.

 

It just has been such a really, really hard few months. My son has been ill since September, it's just a long time. We are due for some good luck I hope.

 

You are due and I am hoping it starts very soon.  Please keep us posted 

[[Ba...]]

I am sorry, NJ....

 

we both need a break.  I can't make decisions, you might have noticed...

 

Mary, you updosed?  Did it help you?

[[Su...]]

Adjusta,

 

I hope you find some relief from your pain. I have a lot of muscle spasms too, and it’s very difficult.

 

 

[[Su...]]

Mary,

 

Thank you. I have dropped my dose twice via dry cutting. I handled the first drop ok. And held for a long time. The second drop, I dry cut again. I struggled with it and updosed to where I was bf the second cut. I am better, but not where I was bf the cut. There are days where I am ok, and days I feel like I am in wd. I am not sure if it’s tolerance.

 

When I resume tapering, I will likely try liquid microtaper, thanks, since I could not tolerate dry cut.  I am holding now as I have a chronically ill son. I have a lot of muscle problems, and am mostly Homebound from pain and spasms.

 

🌻

 

Oh Sunflower, I am so sorry, life seems so unfair sometimes.  I have muscle problems too, they have been my majority symptom through my taper.  They really suck.  I am also sorry about your son.  You are stronger than you know.  We will always be here for you.  Love, Mary 🌹🌻🌼🌷🐝🦋

 

Mary,

 

Thank you. I appreciate your kindness, support, and thoughtfulness. You are strong as well, and I hope your muscle pain improves, . ❤️🌻

[[Su...]]

The updose is keeping me somewhat stable. I am still having a lot of GI issues and some issues with depression. I am hesitant to go up further.

 

My mom I think is just overwhelmed knowing she will be in this nursing home until she passes. She has Parkinson's on top of her broken hip she is trying to recover from. It would be better if she could live with someone but she doesn't want to go live with her brother, there is absolutely no way I can take on that responsibility now, and my sisters also don't feel able to take her. It is a very "social" nursing home but my mom just wants to sit in her room all day and watch tv or read and not interact with anyone. I just need to get her settled there and then I need to take a step back and focus on the rest of my life. Also have a frozen shoulder that needs PT badly but I have had no time.

 

It just has been such a really, really hard few months. My son has been ill since September, it's just a long time. We are due for some good luck I hope.

 

I hope everything stabilizes for you, and that your son improves soon, NJ strength. 🙏🏻❤️

[[Ba...]]

NJ, it is especially hard with your son and Mother... you are kind of sandwiched in the middle there...

[[Ma...]]

I am sorry, NJ....

 

we both need a break.  I can't make decisions, you might have noticed...

 

Mary, you updosed?  Did it help you?

 

Barbara, I am on valium and went to fast, I only up dosed 1.25 mgs.  That's just a minimum updose, I follow your posts and would give anything to help you.  But I only have experience with xanax and Valium.  I am down to 10.56 and it still makes me sleepy as hell all day and my muscles are my worst sxs.  I am in pain most of the time.  I hope some one can give you some good advice, but I do believe you need to stop changing benzo's.  It keeps your cns and brain so unstable each time you change.  I am sorry, I wish I knew more.  Love and healing wishes to you, Mary 💚❤️💜🙏🙏🙏🙏🙏

[[Ba...]]

Thanks.  yes, need to find some stablity.

So got brave updosed about .5 mg valium and so nauseaus today.  Tired, too, but the nausea...  I am guessing this not the desired response.  uck.

[[Fi...]]

Because this appears to be about the only thread even somewhat supportive of up-dosing, I think I should report that up-dosing has improved my quality of life so much that I believe my story should be included in "Success Stories".

 

I've previously reported that my cognitive function improved to normal after up-dosing.

 

My physical stamina is also improving. For instance, today I scrubbed my large walk in shower from top to bottom which I haven't been able to to do since beginning w/d. I feel fine.

 

I have been interacting socially with family, friends and the general public on a regular basis. I've made out-of-state trips without difficulty. Since beginning and continuing through w/d I did not feel up to doing that. Now I look forward to social activities and hope to continue finding better and more frequent activities to enjoy life out-of-doors and in nature, especially now that Winter is over and Spring has sprung.

 

I still don't look forward to mowing the large acreage around my house but, I've never enjoyed doing that. The grass is greening up so I know I'll be going back and forth, zig-zagging between trees within a week. However, at least I don't dread doing that like I did during w/d. It's just one of those things that needs to be done. I'll just plug in my ear buds & whistle while I work.  

 

So, I'll conclude this post by saying up-dosing is likely the best decision I've made since trying to w/d from a benzo.

 

Whatever decisions are made and whatever consequences occur, I truly wish the best for everyone.

[[Ma...]]

Because this appears to be about the only thread even somewhat supportive of up-dosing, I think I should report that up-dosing has improved my quality of life so much that I believe my story should be included in "Success Stories".

 

I've previously reported that my cognitive function improved to normal after up-dosing.

 

My physical stamina is also improving. For instance, today I scrubbed my large walk in shower from top to bottom which I haven't been able to to do since beginning w/d. I feel fine.

 

I have been interacting socially with family, friends and the general public on a regular basis. I've made out-of-state trips without difficulty. Since beginning and continuing through w/d I did not feel up to doing that. Now I look forward to social activities and hope to continue finding better and more frequent activities to enjoy life out-of-doors and in nature, especially now that Winter is over and Spring has sprung.

 

I still don't look forward to mowing the large acreage around my house but, I've never enjoyed doing that. The grass is greening up so I know I'll be going back and forth, zig-zagging between trees within a week. However, at least I don't dread doing that like I did during w/d. It's just one of those things that needs to be done. I'll just plug in my ear buds & whistle while I work.  

 

So, I'll conclude this post by saying up-dosing is likely the best decision I've made since trying to w/d from a benzo.

 

Whatever decisions are made and whatever consequences occur, I truly wish the best for everyone.

 

That's great for you FI, it's a shame it doesn't effect everyone the same way, some feel better, others worse and some no difference, so it's a hard choice for everyone.  Again, I am glad it worked so well for you.  Its so amazing 1.0 mg can make such a difference  .  Mary, 💜 

[[Fi...]]

Mary,

 

It's especially hard to make a choice with excessive fear mongering about up-dosing. If I had followed the advice of too many people promoting tapering/cessation, there is no doubt in my mind that I would either be dead or wishing that I was.

 

For me, for several of my real life friends and from the posts from far too many others I've witnessed on this board the most damaging symptoms and consequences seem to occur at very low doses or after complete cessation.

 

I fail to understand why some people on this board persist in persuading others to continue tapering when they are quite obviously suffering devastating health effects from their w/d efforts. Mary, can you please explain to me why some people do that and why this board does not discourage that type of aberrant behavior?

 

 

 

 

 

[[Ma...]]

Mary,

 

It's especially hard to make a choice with excessive fear mongering about up-dosing. If I had followed the advice of too many people promoting tapering/cessation, there is no doubt in my mind that I would either be dead or wishing that I was.

 

For me, for several of my real life friends and from the posts from far too many others I've witnessed on this board the most damaging symptoms and consequences seem to occur at very low doses or after complete cessation.

 

I fail to understand why some people on this board persist in persuading others to continue tapering when they are quite obviously suffering devastating health effects from their w/d efforts. Mary, can you please explain to me why some people do that and why this board does not discourage that type of aberrant behavior?

 

FI, this is all so individual for everyone.  It's completely variable, what drugs their on, just a benzo , ad's, pain meds, sleep meds.  Everything  is just so different for each person, the one thing you can never say to anyone on here, I do this, it will work for you.  The plain fact is, you don't know that, so you give your best suggestion possible and then it's up to them to decide the path they want to take.

This is truly the reason tapering is so damn hard.  There is no right way for everyone.  . Mary 💜

[[Ca...]]

Tricky question... -Great reply...!!

 

[[Ma...]]

Tricky question... -Great reply...!!

 

You sound surprised  :laugh:

Mim

[[Ca...]]

Tricky question... -Great reply...!!

 

You sound surprised  :laugh:

Mim

Trick question..?? -lets just say "impressed" lol..

 

 

[[Ma...]]

Tricky question... -Great reply...!!

 

You sound surprised  :laugh:

Mim

Trick question..?? -lets just say "impressed" lol..

 

:D. , can't wait for you to feel better 💜  Hey, what does soh mean? 

[[NJ...]]

Mary,

 

It's especially hard to make a choice with excessive fear mongering about up-dosing. If I had followed the advice of too many people promoting tapering/cessation, there is no doubt in my mind that I would either be dead or wishing that I was.

 

For me, for several of my real life friends and from the posts from far too many others I've witnessed on this board the most damaging symptoms and consequences seem to occur at very low doses or after complete cessation.

 

I fail to understand why some people on this board persist in persuading others to continue tapering when they are quite obviously suffering devastating health effects from their w/d efforts. Mary, can you please explain to me why some people do that and why this board does not discourage that type of aberrant behavior?

 

I appreciate your post. I am sitting today at work nearly crying and completely nauseous. I have been sick almost constantly since trying to taper almost three years ago. I updosed in September and am holding but think I need more. I have been slammed with personal issues that are leaving me in a very bad place. (Son has been sick for 8 months with no clear diagnosis and is on high dose steroids for suspected Crohn's disease but is barely responding). I wish I knew if going up another .25 or even .5 (which would double my dose) would help for sure. I am quickly getting to the point where I will be unable to work and I cannot for many reasons not work. My psychiatrist, recently fired therapist, and primary care physician as well as several family members are telling me I should go up. Just not sure what to do.

[[Ma...]]

Mary,

 

It's especially hard to make a choice with excessive fear mongering about up-dosing. If I had followed the advice of too many people promoting tapering/cessation, there is no doubt in my mind that I would either be dead or wishing that I was.

 

For me, for several of my real life friends and from the posts from far too many others I've witnessed on this board the most damaging symptoms and consequences seem to occur at very low doses or after complete cessation.

 

I fail to understand why some people on this board persist in persuading others to continue tapering when they are quite obviously suffering devastating health effects from their w/d efforts. Mary, can you please explain to me why some people do that and why this board does not discourage that type of aberrant behavior?

 

I appreciate your post. I am sitting today at work nearly crying and completely nauseous. I have been sick almost constantly since trying to taper almost three years ago. I updosed in September and am holding but think I need more. I have been slammed with personal issues that are leaving me in a very bad place. (Son has been sick for 8 months with no clear diagnosis and is on high dose steroids for suspected Crohn's disease but is barely responding). I wish I knew if going up another .25 or even .5 (which would double my dose) would help for sure. I am quickly getting to the point where I will be unable to work and I cannot for many reasons not work. My psychiatrist, recently fired therapist, and primary care physician as well as several family members are telling me I should go up. Just not sure what to do.

 

Oh NJ, it's such a hard decision I know. 

This is something I have read on the threads I thought was interesting

 

Go higher and if you respond really well, ease back down some, and see if you are ok there.  That way you don't add more back than you need to feel okay.  You do it pretty quickly too, so you aren't at that higher dose any longer than you have to be.  Did I explain that okay?  It always sounded like it made a lot of sense to me.  Let me know what you think?  Here with you , Mary 💜

[[NJ...]]

Mary,

 

It's especially hard to make a choice with excessive fear mongering about up-dosing. If I had followed the advice of too many people promoting tapering/cessation, there is no doubt in my mind that I would either be dead or wishing that I was.

 

For me, for several of my real life friends and from the posts from far too many others I've witnessed on this board the most damaging symptoms and consequences seem to occur at very low doses or after complete cessation.

 

I fail to understand why some people on this board persist in persuading others to continue tapering when they are quite obviously suffering devastating health effects from their w/d efforts. Mary, can you please explain to me why some people do that and why this board does not discourage that type of aberrant behavior?

 

I appreciate your post. I am sitting today at work nearly crying and completely nauseous. I have been sick almost constantly since trying to taper almost three years ago. I updosed in September and am holding but think I need more. I have been slammed with personal issues that are leaving me in a very bad place. (Son has been sick for 8 months with no clear diagnosis and is on high dose steroids for suspected Crohn's disease but is barely responding). I wish I knew if going up another .25 or even .5 (which would double my dose) would help for sure. I am quickly getting to the point where I will be unable to work and I cannot for many reasons not work. My psychiatrist, recently fired therapist, and primary care physician as well as several family members are telling me I should go up. Just not sure what to do.

 

Oh NJ, it's such a hard decision I know. 

This is something I have read on the threads I thought was interesting

 

Go higher and if you respond really well, ease back down some, and see if you are ok there.  That way you don't add more back than you need to feel okay.  You do it pretty quickly too, so you aren't at that higher dose any longer than you have to be.  Did I explain that okay?  It always sounded like it made a lot of sense to me.  Let me know what you think?  Here with you , Mary 💜

 

This is actually what my psychiatrist said to do. I really think I need to try something. It's just not holding me enough with the chronic health issues with my son, and now my questionable mammogram, I don't go back until a week from Friday for the rescreening, I am totally losing it. Did just make a call to see if I can get in with a new therapist. The one I had been seeing for years I fired last week, she totally was not helping me deal with my son's issues. She basically thought I was over-reacting; as you know, he has been sick since September and we have gone through so many tests and doctors and we still aren't sure what is going on and he is on a really scary high dose of steroids which we thought would be the magic bullet and it is barely helping him, and we need to start weaning him off soon with no plan of what to do if he doesn't do well.

 

And I barely get anything done at work as I am just so unfocused.

 

Sorry, totally venting here. I think I need to try .75 of K; I'd hate to go back up to 1 mg but at this point it's not about being drug free it is about being able to get to the next day.

[[Ma...]]

NJ, you are going through so much..  anyone can understand you wanting to find an easier way.  Let me know what you decide.  Love you, Mary.  Hope you find it is a way to give you some relief, you so deserve it 💜💜💜💜💜

[[Hn...]]

Hi everyone

 

I am hoping for some help and advice.

 

I was taking klonopin at 2mg a night for  1 year and then went down to 1.5 mg a night for 55nights from September to end of November 2018. In December 2018 I lost track of my intake and started taking the klonopin sporadically every night from December - mid February 2019, ranging from 1.5mg -0.5mg.  My PDoc said this yo- yo dosing was ok, but clearly it wasn’t.  About 2 weeks ago I had the horror shock that it had been the medication causing all my horrible symptoms and that I have basically been in withdrawal since December 2018.  So I started taking 1mg every night for the last 2 weeks trying to stabilize. I don’t know if I should go to 1.5mg since that is the last dose I remember  not feeling strange back at the end of November 2018.  I have taken 1.5mg since then but sporadically as I mentioned above.

 

Do you think I will stabilize and these crazy feeling will go away on 1mg?  Please help!

 

I need some advice because it’s been almost two weeks that I have been stable on 1mg on klonopin and even though my head symptoms seem to have improved a little bit they are not good and I have internal tremors, Gi issues,  emotional issues and other issues.  The last time I remember feeling normal was when I was taking 1.5mg in November 2018.  My father wants to send me for testing and I am almost ready to cave in. Because I am not sure what to do.  I don’t know if I should go to the 1.5mg and if that will help, and how long it will tale for me to know. My original dose was 2mg, but I am just so scared and unsure because I think some of this might be what some people call derealization but I’m not entirely sure.  Everyday feels hard to get through, but I don’t know if I can heal and stabilize if I just stay at the 1mg. I desperately need advice....