On Valium over 10 Years. GP Cut Dose in Half Without Warning or Discussion. Now What?

[[do...]]

I have been on Valium 5mg “1/2 to 1 up to twice daily (i.e. 10mg) per day” for well over a decade. I have never abused this medication. I have never asked for extra pills or to up my dose. I did find that over at least the past 5 years I have needed the full prescribed dose. Two weeks ago my GP advised me through her secretary or nurse over the phone that she wanted me to come off this medication since tolerance could develop and there can be bad side effects and the medication had been prescribed as needed and not “every day.” So, she wanted to go in a new direction and start me on an SNRI. When I told the person on the that I would need a taper dose from the doctor, she reluctantly said, “I will tell her.” When I went to pick up my prescription that weekend, I discovered the dose had been changed to 5mg once daily at bedtime. I have had some calm times without most symptoms but mostly having a really hard time with this 50% reduction. Does anybody have any experience or advice on how to approach this? I don’t know if this is a safe cut to make and question whether my doctor has been trained in this regard. Given that the dose was always relatively low compared to the range of how it is typically prescribed, I wonder if this is the way it’s done and I need to just deal with it. If it’s not, I need guidance on how to handle this situation with my GP. I am mainly concerned about my long term health, but I have also been experiencing some very uncomfortable side effects. Tense muscles dancing around twitching, insomnia. panic and confusion/memory problems have been most concerning. Any suggestions would be ever so greatly appreciated. 

[[Bu...]]

Hi @[do...],

I'm sorry you're dealing with such miserable withdrawal symptoms.  Unfortunately  many doctors, including the ones doing the prescribing, are not very knowledgeable on how to safely discontinue a benzo.  A 50% cut is pretty high.  Usually we suggest cutting your dose by 5-10% every 2-3 weeks and adjusting this as needed based on how you feel.  

Have you had a chance to tell your doctor about how you are feeling on this current dose?  And do you think that she is open to discussing a slower taper with you?  If she is, there are a couple of resources that are particularly useful:  The Maudsley Desprescribing  Guidelines, which just came out, has up-to-date information about discontinuing safely and there is the Ashton Manuel, which was a pioneering work in benzo discontinuation and withdrawal.

I know most doctors don't respond well to being "told" what to do, so maybe if you approached it as a "I agree that getting off of this is a good ideas so I did some reading and came across some ideas about how to make this a little easier and I would really like to try this.."  Or something along those lines.  Sort of a gentle, sideways approach, if that makes sense.

[[do...]]

@[Bu...] Thank you so much. Oh my goodness. I appreciate this so much. That is a great frame for talking with my GP. So far, I’ve been afraid to talk with her because the girl on the phone sort of implied that I was the one who made a mistake by taking the pills every day vs as needed. And I feel I didn’t make a mistake.because nobody told me  I wasn’t allowed to need the maximum prescribed dose every day. And nobody questioned it when I needed that dose for all these years. But I need to do something to advocate for myself bc I feel like she is going to do this prescription for two months and then after that tell me to just jump off to zero. and I can barely stand what is happening now.
 

On cut rate. I was thinking the dose cut I saw in the Ashton Manual for Valium 10mg was by 1mg every 1-2 weeks. Is that the same as 10%? And is the new guideline resource a bit more conservative in terms of the number of weeks (2-3 vs 1-2)? Also, I always got confused before when I tried to cut on my own. Is it 5-10% of the original dose or 5-10% of the remaining dose. But I think looking at the manual this time, it’s from the original dose. Correct? Also, does it say in the new guideline book anything about patients who are on relatively low dose like 10mg for long periods? And do you you recommend I buy the book on Amazon and wait for it to come in the mail to bring to her? Or can I get it on kindle and bring in on my tablet? Again, thank you so much for your response. You are the first person I’ve made contact with who has given me any information outside of YouTube videos which I’ve watched but not commented on. 

[[or...]]

29 minutes ago, [[d...] said:

@[Bu...] Thank you so much. Oh my goodness. I appreciate this so much. That is a great frame for talking with my GP. So far, I’ve been afraid to talk with her because the girl on the phone sort of implied that I was the one who made a mistake by taking the pills every day vs as needed. And I feel I didn’t make a mistake.because nobody told me  I wasn’t allowed to need the maximum prescribed dose every day. And nobody questioned it when I needed that dose for all these years. But I need to do something to advocate for myself bc I feel like she is going to do this prescription for two months and then after that tell me to just jump off to zero. and I can barely stand what is happening now.
 

On cut rate. I was thinking the dose cut I saw in the Ashton Manual for Valium 10mg was by 1mg every 1-2 weeks. Is that the same as 10%? And is the new guideline resource a bit more conservative in terms of the number of weeks (2-3 vs 1-2)? Also, I always got confused before when I tried to cut on my own. Is it 5-10% of the original dose or 5-10% of the remaining dose. But I think looking at the manual this time, it’s from the original dose. Correct? Also, does it say in the new guideline book anything about patients who are on relatively low dose like 10mg for long periods? And do you you recommend I buy the book on Amazon and wait for it to come in the mail to bring to her? Or can I get it on kindle and bring in on my tablet? Again, thank you so much for your response. You are the first person I’ve made contact with who has given me any information outside of YouTube videos which I’ve watched but not commented on. 

I don't know anything about the Maudsley info, but I've used the Ashton Manual, free-online I'll put link below where you can download PDF file onto your phone/computer.  I agree with all @[Bu...] has to say.  I had to approach my MD carefully because I already knew he was cutting me off too fast, and luckily I had found BB and by them, the Ashton Manual.  I'll also add a video by Dr. Heather Ashton below, oregonlady,

Ashton Manual

Dr. Heather Ashton, just 3-4 minute video ;)

[[Ct...]]

1 hour ago, [[d...] said:

@[Bu...] Thank you so much. Oh my goodness. I appreciate this so much. That is a great frame for talking with my GP. So far, I’ve been afraid to talk with her because the girl on the phone sort of implied that I was the one who made a mistake by taking the pills every day vs as needed. And I feel I didn’t make a mistake.because nobody told me  I wasn’t allowed to need the maximum prescribed dose every day. And nobody questioned it when I needed that dose for all these years. But I need to do something to advocate for myself bc I feel like she is going to do this prescription for two months and then after that tell me to just jump off to zero. and I can barely stand what is happening now.
 

On cut rate. I was thinking the dose cut I saw in the Ashton Manual for Valium 10mg was by 1mg every 1-2 weeks. Is that the same as 10%? And is the new guideline resource a bit more conservative in terms of the number of weeks (2-3 vs 1-2)? Also, I always got confused before when I tried to cut on my own. Is it 5-10% of the original dose or 5-10% of the remaining dose. But I think looking at the manual this time, it’s from the original dose. Correct? Also, does it say in the new guideline book anything about patients who are on relatively low dose like 10mg for long periods? And do you you recommend I buy the book on Amazon and wait for it to come in the mail to bring to her? Or can I get it on kindle and bring in on my tablet? Again, thank you so much for your response. You are the first person I’ve made contact with who has given me any information outside of YouTube videos which I’ve watched but not commented on. 

@[do...] The Ashton Manual recommends cutting 5 to 10 percent of your current dose (not the original dose). I am cutting less than that. So are many others.

[[do...]]

@[or...] Thank you so much for sharing. I just watched the video and although I have been aware of the Ashton Manual —I tried to taper on my own using a scale to measure my cut percentages on my own a few years ago— @[Ct...] I don’t recall if I was smart enough to realize that about the amount being the current dose amount vs the original dose. So thank you for that clarification. Oregon lady, envious you knew before you talked to your GP that you were about to be cut  off. I haven’t had time to gather my thoughts on a decent night’s sleep or before I got so emotional about it all. Do you have any tips on things you said to your GP to get him on board? I’ve worried she may not take the Ashton Manual or the other one I just bought on kindle brought to my awareness by @[Bu...] above and have been skimming for detailed info on my specific case of being on a relatively low dose (10mg Valium) over a relatively long time (10+ years). I need to be organized, yet I am finding it difficult without my regular medication to gather info calmly, organized. 

[[do...]]

Oops

Edited June 19 by [do...]
Duplicated post by accident

[[or...]]

59 minutes ago, [[d...] said:

@[or...] Thank you so much for sharing. I just watched the video and although I have been aware of the Ashton Manual —I tried to taper on my own using a scale to measure my cut percentages on my own a few years ago— @[Ct...] I don’t recall if I was smart enough to realize that about the amount being the current dose amount vs the original dose. So thank you for that clarification. Oregon lady, envious you knew before you talked to your GP that you were about to be cut  off. I haven’t had time to gather my thoughts on a decent night’s sleep or before I got so emotional about it all. Do you have any tips on things you said to your GP to get him on board? I’ve worried she may not take the Ashton Manual or the other one I just bought on kindle brought to my awareness by @[Bu...] above and have been skimming for detailed info on my specific case of being on a relatively low dose (10mg Valium) over a relatively long time (10+ years). I need to be organized, yet I am finding it difficult without my regular medication to gather info calmly, organized. 

I'd been with him for about 6 years so he knew me pretty well.  Neither of us knew much about tapering, and he agreed that .25 (quarter tablet just broken with a pill-cutter) was a good idea.  That didn't work out for me though, it was way too much, and I had the whole, left side of my body go numb for 3 days.

My doc never would say if he thought the taper did it, but he was very willing to put me back on full dose.  Then I found BB and heard about a slow, micro taper which I went ahead and started doing it without telling my MD.  I am not saying I was right to do that, but I did it, all the while still getting my 30 pills a month at 1 mg.  I kept exact notes on my progress, and finally, when I knew I was good-to-go on with the taper, I told him and also a new NP.  I requested the NP so I could see him in person visits.

Long story, but my MD has Multiple Sclerosis and could no longer see patients in person, only video.  Too hard to understand all he said as time went on.  New NP knew the Ashton Manual, and the right way to taper was left up to me.  I also saved the rest of what I "shaved" off because of the horror stories I heard.  I wasn't going to be left to a CT.  So that's just me, and I'm not recommending it, but I'm 71 and wasn't going to risk another episode like the "body numbness" thing, oregonlady,

PS I've been very fortunate but the main tip I would give, is let you MD know you are determined to get off, but you need a very, slow taper.  Show him/her notes you keep so they can see that you are taking responsibility for your own health, with their help of course

[[Bu...]]

Hi again @[do...],

There is some great advice here from @[or...] and @[Ct...].  

And don't worry, I hadn't found this site until after I had finished a very rocky taper and was off.  A lot of us here wish we had been here first, but it's ok, you're here now.  

Regarding folks on low doses for a long time,  usually we benefit from a slow, symptom guided taper.  I took a low to average dose of Clonazepam for 20 years and tapered off too quickly.  I did some very large cuts: 25-50% and really felt it (and still do).  

3 hours ago, [[o...] said:

is let you MD know you are determined to get off, but you need a very, slow taper.  Show him/her notes you keep so they can see that you are taking responsibility for your own health, with their help of course

I think this is a great approach from @[or...].  I have found that many doctors are fine with us setting the schedule as long as we have a progressive plan (and give them some credit for it 😉).  If I were in your spot, I would make an in-person appointment and explain the current symptoms.  I would let the doctor know what I would like to try (bring a prepared taper plan).  I think I would wait and see how she reacts to this approach before sharing the Ashton Manual or Maudsley guidilnes with her.  Sometimes those resources are just better for us to have to come up with a good plan. 

If you need help with figuring out the specifics of a taper, we can certainly help you with that, too.  

And for the record, I don't think you made any mistakes with the way you took the meds.  You took it according to the directions on the bottle.  I'm sorry about the girl on the phone.  Unfortunately, I've run into that too. A person at the doctor's office, not even involved in direct care,  offensively blaming a patient for a situation that really, there is nothing to blame anyone for.

[[do...]]

@[or...] thank you so much for sharing your approach and some of the reasons why you chose that path. I am very disappointed in myself as I had the opportunity to come down on my own terms for years and have tried, but always caved and went back to full prescription strength. That is terrifying about being half numb for three days. Omg. That Mishra have been so incredibly scary! The experience of the past couple weeks have certainly made me more determined than ever before  to get free of this medicine.

 @[Bu...]thank you for your comments and suggestions. I called my GP and made an appointment for tomorrow morning at 9:45am central standard time. I won’t bring up either of the manuals. I’ve been trying to work out what a sensible taper plan might be for me. In times past when I did it on my own, I think I always felt the cuts and caved maybe because as @[Ct...] said, I was doing the wrong percentage cut. I was doing 10% of the original dose and not 10% of the current dose. I was also doing one to two week steps.

 

@[Bu...] I definitely need help with the specifics of the taper. I was taking with my therapist about it today and we just said maybe I would propose that I come back to baseline for two weeks just to get me to where I can sleep again and sort of calm down the other bothersome symptoms I’ve been experiencing. Then, start in with 10% reductions every 2 weeks keeping in mind that I may need to go slower than that even from the start and definitely as we get closer to the end of the taper …  there may be weeks when I need to hold on a particular cut for longer than 2 weeks based on symptoms. Does that sound like a good plan to you? And should I just ask her to write an as needed prescription for 5mg to supplement the rest of this month and next month? Maybe ask for two 15 day supplies so it’s easier for her? I picked up the latest prescription on Saturday June 8th, even though it was written on June 7th. And then after that, ask her if we can meet again to check my progress and switch the prescription back to its original wording (1/2 to 1 pill up to twice daily as needed for panic) until I finish the taper. I’m not sure how many month increments she wants to write for or how long I should say I believe this will take. Do I just ask her to trust me on the process and let me have some autonomy (the way the video @[or...] was so kind to share from Dr Ashton)?  Would sure appreciate input on  how to approach this.
 

Thank you for saying what you did about me not misusing the prescription. I have felt so ashamed and embarrassed and angry and offended and sad about that conversation. Hopefully tomorrow will go much better when I’m speaking with my actual doctor. We have a long history by now and a very good report. Before this dust up, I considered her (and her staff) a core member of my support network.  

[[do...]]

@[or...] thank you so much for the suggestion about what to say and bringing in the notes. I will try to say that exact thing. I don’t have notes yet. But maybe I can ask to see her back in a month to status my progress? Is that something you did?

[[Bu...]]

@[do...], I think you have a good plan here: 

30 minutes ago, [[d...] said:

I would propose that I come back to baseline for two weeks just to get me to where I can sleep again and sort of calm down the other bothersome symptoms I’ve been experiencing. Then, start in with 10% reductions every 2 weeks keeping in mind that I may need to go slower than that even from the start and definitely as we get closer to the end of the taper …  there may be weeks when I need to hold on a particular cut for longer than 2 weeks based on symptoms.

Also, keep in mind a couple of things.  It may take longer that two weeks to stabilize and that's ok.  Stable doesn't necessarily mean that you'll feel 100% great (you might) but it usually means that you feel like things are manageable.  And if 10% is still too much of a cut you can also try less, some people do well with 5% cuts.  There is no rush here.  The goal is to discontinue as safely and as comfortably as possible.

And I assume that you are also going to go back to the original twice a day dosing?  That will probably help quite a bit too.

As for what prescription to ask for, that gets a little tricky for me as I was on clonazepam, which is very different dosages.  I think that I would ask for her to write your original script for from now through whenever she wants to see you next at least, so that you have some wiggle room with how you move forward.  And as @[or...] suggested, I would keep the pieces of pills.  When you resume your taper and eventually move to smaller doses, then you can ask her about prescribing the 2mg pills, just because it will be easier to work with, but that's down the road a bit.

 

[[Bu...]]

Since you have a good relationship with your doctor, then I think that I would approach it as telling her that you appreciate her concerns for you with this medication and that you would like to work together on this using a slow taper.

Your therapist sounds like a great support.  Would he/she be willing to speak on your behalf to your doctor (if necessary) about the benefits of a slow taper?

 

[[do...]]

@[Bu...] Ok. I can do that. Yes. My therapist said today that she would be happy to speak with her and she can explain how I’ve tried doing this on my own and had difficulty due to life stress and limited resources to lean on for support. But she sees I’ve been really trying to work on my self care and make more time to prioritize my mental and physical well being. It’s just hard.  

[[do...]]

And in her opinion, a slow taper is the only way I will be able to come off this medication.

[[Bu...]]

@[do...], This sounds good.  Having the support of a good therapist is priceless.   You also have the support of all of us here. ❤

It's getting pretty late here for me, so I'm going to sign off for tonight.   Best wishes for you appointment tomorrow and let us know how it goes and how else we can help.

Blessings and have a good night.

[[do...]]

Thank you @[Bu...]  I really appreciate you taking the time to give your input. You didn’t say how long ago you had your last bit of benzo, but I’d imagine a while since you are able to offer advice now. I am so sorry your taper is still impacting your life. We suspect my mom was injured by the one you were on. And I suspect it was some to do with how she was instructed to taper. We will never know, but this is my concern for her. FYI, she has PCA (posterior cortical atrophy) and I am her primary caregiver. So anyway, thanks again and I will report my findings. 
 

Blessings to you in return and good evening. 

[[or...]]

I didn't read all of the latest replies DZ but I am on 1 mg of Clonazepam so I cut very small, and I took it many years.  But Valium is a bit different for one thing, half-life etc., but I'm not sure.  I can't help much today as this is my actual moving day. Couldn't sleep lastnight, so kind of dingy just worrying about everything working out.

I did want to mention that I have heard many times, the larger dosage we've been on, the more we can taper, supposedly, everyone is different as you know.  I would just think hard about leaving yourself some "wiggle room" in case any percent you try is too much.  But if you do great on it, then sometimes like me, I've tapered a little more.  It's sort of trial and error, but the notes you keep your doctor will see you are being diligent. 

I love what @[Bu...] says about how to leave the manuals/texts out of your conversations.  I think that is very wise, but just show him/her that you are determined and really want the two of you to work together.  It sounds very good so far with you talking freely to your therapist and already they are willing to let you work this all out, I will check in once I'm into my apartment and can find all my computer stuff.  Maybe I better find my groceries first, but it's a toss up, OL

[[or...]]

4 hours ago, [[d...] said:

@[Bu...] Ok. I can do that. Yes. My therapist said today that she would be happy to speak with her and she can explain how I’ve tried doing this on my own and had difficulty due to life stress and limited resources to lean on for support. But she sees I’ve been really trying to work on my self care and make more time to prioritize my mental and physical well being. It’s just hard.  

Excellent!!  Prayer, hope and yes, blessings to for you DZ!  You've got lots of support here, I don't know what I'd done with out BB OL

[[do...]]

Thank you @[or...]! Best wishes on your move day! See you on here after you have had a chance to get settled in a bit. 

[[do...]]

9 hours ago, [[B...] said:

@[do...], I think you have a good plan here: 

Also, keep in mind a couple of things.  It may take longer that two weeks to stabilize and that's ok.  Stable doesn't necessarily mean that you'll feel 100% great (you might) but it usually means that you feel like things are manageable.  And if 10% is still too much of a cut you can also try less, some people do well with 5% cuts.  There is no rush here.  The goal is to discontinue as safely and as comfortably as possible.

And I assume that you are also going to go back to the original twice a day dosing?  That will probably help quite a bit too.

As for what prescription to ask for, that gets a little tricky for me as I was on clonazepam, which is very different dosages.  I think that I would ask for her to write your original script for from now through whenever she wants to see you next at least, so that you have some wiggle room with how you move forward.  And as @[or...] suggested, I would keep the pieces of pills.  When you resume your taper and eventually move to smaller doses, then you can ask her about prescribing the 2mg pills, just because it will be easier to work with, but that's down the road a bit.

@[Bu...] Can you say more about how you’d go about moving to a twice daily dose? Ive primary been on this 10mg at night to help with sleep for a very long time. It never occurred to me to ask for more pills to compensate but I have wondered if I was having inter-dose withdrawal by doing that.

And now, having so much trouble sleeping with the half dose … and knowing that my GP (or at least the girl who called on her behalf) has expressed concern about me driving under the influence of this medication, I just don’t even know what I should propose as a plan for achieving this. Meeting with her in a little under 1.5 hours from now and no clue.   

[[Bu...]]

@[do...],  Good Morning!  

Well, I imagine that you are in your appointment by now.  I really hope it is going well.  

I think I misunderstood about how many times a day you were taking your meds originally.  I thought you were taking it 2 times a day.  If it was always just at bed time, then you might just want to stick with that.  At least until you stabilize some. 

This whole process is a "see how it goes and make small changes one at a time" kind of thing.  If I were in your spot, I think I would see if going back to the original schedule helps.  If inter-dose withdrawal is suspected, then I think I would deal with it after that.  Too many changes at once can be overwhelming for our brains and central nervous systems.  And it makes it difficult to figure out what is causing what problem.

If you decide later to switch to twice daily, many people divide their one dose into smaller amounts and spread them out.  You wouldn't need more pills for that.  We don't want you have to be on any more than necessary.   If you decide later to try this, then I would suggest starting a new thread asking for other people's help/experiences who have done that.

I'm a little confused about why your doctor would be worried about you driving while on this med.  You've been taking it for years.  So why is she worried now?  Ya, know?  Just something to ask her, maybe.

 

 

[[Bu...]]

@[do...],

I also wanted to say how sorry I am about your mom.  That's awful.  And while I imagine it's incredibly difficult for you being her caregiver, especially with everything that you're dealing with, I'm glad she has someone who loves her so much.  Again, it's great that you have such a supportive therapist, especially when dealing with the stress of care-giving.

And I forgot to mention, it will be 10 months tomorrow since I've been off.  

[[do...]]

@[Bu...] Thank you so much for responding today. I really appreciate you taking time to address my concerns over all of this. And congratulations on hitting your 10 month mark! That’s fantastic. Wow. Good for you! And yes. The situation with my mom is very sad as well as challenging. She is facing so much with such fierce determination. We are enjoying our time together as much as possible. She is a real trooper for sure.

So I spoke with my GP and it went very well. I told the nurse, who is the best and has been there as long as I’ve been a patient, that I wasn’t tolerating the reduction in dosage at all. I explained my symptoms. When the dr came in, she had been briefed on the situation so we got right into it and It turns out the new nurse who’d handled the call when my dose was reduced told the dr I’d been taking my dose separately and full strength. When I told her I’d been taking both doses primarily sf night to help me sleep, she immediately changed my prescription to 10mg once daily at night. She said she would like for us to get my brain chemistry balanced using another drum before taking me off Valium gradually. She prescribed Abilify and said she’d like to see me back in two months.
 

So it went as well as I could have hoped and I didn’t really have to go too far into anything. Hopefully I will sleep well tonight and things will start to feel better as I can do that more. 
Not sure what to do about the Abilify. She said to go ahead and get it filled and think on it while I get back to baseline with the Valium.  So that’s what I’ve been doing. I’ve also been reading as much as I have had time to about the new drug and what Dr Ashton thought about antidepressants as a way to cope with getting off Valium. She doesn’t mention mood stabilizers so far as I could find. But I like the idea of having more motivation and focus. So we’ll see. I am doing as she asked. Thinking. 
 

Anyway, just wanted to say thank you again before I turn in. What an eye opening experience (no pun intended) this has been.

[[...]]

I got a new doctor, got plenty of pills ,and quit anyway.

Doctors are white coat pill clerks. Your gp finally heard how dangerous benzos are but couldn't be bothered to read about BIND or tapering.