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Might I be in "tolerance"?


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Hi BB,

 

I have been successful in the recent past at following Ashton's schedule, crossing from clonazepam to 300 diazepam, and am now at 3.5mg diazepam - it's been very hard, but worthwhile (It's been approximately 1 year since I began the crossover and reduction). I was even getting a few windows here and there.

 

Then I cut to 3.5 (from 4mg). It's been over 6 weeks now. My symptoms increased from a stable place and are not decreasing. What has been decreasing is a sense of making progress. The activities I was beginning to show interest in and even enjoy a little have ceased. I feel stuck- that's my term.

 

I don't know what tolerance is, but my days feel like they did before I started the process - not the actual symptoms themselves but the flow - as if I'm having a groundhog day experience and time is agonizingly slow to me. As if I am treading very murky water.

 

Can someone help me understand if there is a definition or description of tolerance and what types of options are available with a sense of being stuck? Even simply pointing me to where to look on BB might help.

 

Thank you,

Rascal

 

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I know it's hard to determine tolerance as I know many people said their symptoms got worse when they hit the lower numbers. Here are some links discussing tolerance:

 

http://www.benzobuddies.org/forum/index.php?topic=9706.0

 

https://www.benzoinfo.com/tolerance/

 

 

Once you've read through these, can you let us know if you feel you identify with anything being said?

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Hello, rascal4ever.  I’m sorry you’ve hit a rough patch in your taper.

 

Here are definitions for tolerance and withdrawal symptoms from the Alliance for Benzodiazepine Best Practices (citation below):

 

Tolerance

The process of neuroadaptation in which use of a substance over time results in the need to increase the dose of that substance in order to get the same effect as that seen when the substance is first started.

 

Withdrawal Symptoms

The process of neuroadaptation in which use of a substance over time results in a characteristic group of symptoms that occur when that substance is withdrawn.

 

Given that your taper was going well until the last reduction you made, it sounds like you are experiencing increased withdrawal symptoms due to to a ‘too large for you’ reduction in dose.  Your last reduction from 4mg to 3.5mg was a 12.5% reduction. 

 

As jelly baby has noted, it is not uncommon for members to discover they need to make smaller percent reductions in dose when they reach lower doses of diazepam.

 

Citation:

Terminology

The Alliance for Benzodiazepine Best Practices

https://benzoreform.org/terminology/

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Thank you jelly baby and Libertas,

 

I have read the material and do not know which best describes me now. I am confused.

 

I have been trying to get to 3mg and then start a liquid micro taper. That’s in part why I cut to 3.5 (although I don’t like the tablet cutting process). While at 3.5mg, I’ve been working to prepare for and learn the best DLMT for 3.5. It’s been downright baffling, escalating my stress at the least. So many options. I finally landed at dissolving  2 X 2mg (so 4mg)  tablets with vodka, adding 300 ml water, and discarding 37.5ml + 1 daily. (37.5 accounting for the .5 I’ve “withdrawn from). 

 

Creating a spreadsheet to guide me has also been hard.

 

What’s hardest is that I don’t feel “stable” enough to start to liquid taper, IF stable means “ok” or relatively “tolerable”. I was definitely at tolerable and stable at 4mg. Hence- can’t proceed to DLMT.

 

All this is to say I feel stuck at repetitive bad symptoms, plus stuck in my process. And I’m beginning to feel I’m getting even worse.

 

I hope something I’ve mentioned helps you help me- I had been so pleased with the results of my hard work and the help of BB. This week, I’m loosing the light I had begun to see (sorry for dramatics!)

 

Gratefully,

Rascal

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Personally I don't think it's tolerance. When I read through the document from Colin I linked you to, this statement stood out to me:

 

Often, when people have hit a rough patch in their withdrawal taper they are mistakenly advised that they have developed tolerance, and must cut, to resolve the problem.

 

I think it's more likely that your cut was either too big this time or the numbers are just getting low and tough. The fact that you're getting stressed out over your symptoms not abating might be contributing to your situation.

 

I don't think you should be cutting or crossing to liquid in your current state. I think what you need is to give it more time. And I know we all get frustrated when we are "doing nothing" and just waiting it out.

 

You have done a tremendous job on reducing your dose. We have a member here that often says "heal more than you're cutting". I think you just need to do more healing. Please don't get discouraged. You're going to get there!

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Thank you Jelly Baby,

 

Sounds as if staying where I am is the option your suggesting, along with a extra helping of patience and reminding myself how far I’ve come.  Am I hearing you right? 

 

Is there some point at which holding without change becomes unadvisable? I realize we’re all different.

 

Glad to hear from you,

Rascal

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Sorry rascal4ever

 

I know this sucks. I've also felt stuck in my taper before.

 

During my last crash I held for 6 weeks before I felt better, so it makes sense for some it can take longer. If you're able to relax and not stress about this wave, hopefully you'll see some improvement. How about we work on bite size chunks? What about we give it another 2-3 weeks and you make sure you keep a detailed journal of any improvements even if it's just a 30min window? Then we re-evaluate again. I'm not saying resume your taper after this time, I'm saying let's talk about how you've been feeling. I know waiting indefinitely also causes agitation, so this way you know the topic is up for discussion again, but in the meantime, you try and relax.

 

Maybe Libertas will weigh in as well?

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Hello again, rascal4ver.

 

Are your symptoms tolerable?  Are you functional enough to do what you need to get done?

 

If so, then I agree with jelly baby.  Wait another 10-14 days, keep a journal (see note below), and then re-evaluate.

 

If not, then another option to consider is a small updose (perhaps from 3.5 to 3.75) to see if that helps.

 

What strength tablets do you have?  Have you talked to your prescriber about the possibility of using a combination of 2mg tablets and the 5mg/5mL oral solution to complete the last phase of your taper?

 

Note: You might consider rating your symptoms and functionality on a 0-10 scale each day so you can graph the results.  Graphs can sometimes reveal patterns that aren’t apparent from text-only notes.

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Jelly baby and Libertas,

 

My symptoms have been barely tolerable and recently (this week) not tolerable (meaning they are interfering with life greatly)  I concur that my frustration with wanting to move ahead is exacerbating them all. After digesting both your replies, I already feel better at the prospect of waiting, and this morning am feeling relieved.

 

i especially appreciate the notion of healing more than cutting, which I was experiencing at 4mg. The cut was too large.

 

I am meeting with my doctor today and will ask about both more of the 2 mg tablets (what I currently have and have been using- I also have remaining 5 mgs from when I was at higher doses but see no use for them now) and liquid diazepam, hoping that prescribing both will not trigger some sort of "not allowed" from controlled substances regulators. That way, I will have options at my disposal when more ready to proceed.

 

I was indeed very confused and frightened by the quote regarding "must cut to resolve the problem" (when believed to have hit tolerance). I'm dropping that one!

 

What I read about updosing opens up another can of worms either on the forum and/or in my head. If either of you have clarification about such, I'd love to hear it.

 

I am much better at the moment- I'd like to hug you both,

Rascal  :smitten:

 

 

 

 

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Hi, rascal4ever.

 

Thank you for sharing the good news that you are feeling a bit better today.  I agree with you that the most likely culprit for your uptick in withdrawal symptoms was that last  ‘too large for you’ reduction in dose.

 

Re: your comment about not triggering a ‘not allowed’ from controlled substance regulators ...

 

Given the number of members who have used the tablet/oral solution combination over the years, I wouldn’t be overly concerned about this.  Their prescribers were able to write prescriptions for both so odds are yours will be able to as well.

 

PS Thanks for confirming you were not taking 300mg of diazepam.  That number definitely caught my attention. ;)

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I'm glad you're better and I can see you're in a much better headspace! Sometimes it just helps to talk things through.

 

Yes, I figured 300mgs Valiums was probably a typo. But even though you didn't taper down from that number, you've still done an amazing job!

 

Please keep us updated on your doc appointment!

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Thank you, Jelly Baby!

 

I met with doc today- she was fine with prescribing both tablets and liquid but it see my pharmacy has only released the tablets to me 😕 Not sure what to do next, but I’m glad I’m not in a rush. The managing pharmacist is a neighbor/friend- perhaps if I speak with him and explain what I’m up to, he’d release both. Any tips?

 

Interesting : my doc emailed me after the appointment and asked if I would “share what I’ve found online in case she comes across the issue again”. I don’t know whether to feel complemented, furious at doctors ignorance, or both. Not to mention that my telling her of BB won’t teach everything I’ve learned (not that I’m through, either). I told her all about Ashton last year.

 

Ah well- I’m enjoying feeling better and taking more time to find some healing 🥰

 

Your support really helps,

Rascal

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Well, things seem to be going your way and working out for you! I'm so happy to see you in such good spirits.

 

How awesome you know the managing pharmacist. If it were me, I would just explain the situation to him as it seems there's been a mix-up and they misunderstood the prescription. They probably don't get a lot of patients tapering so I guess they were confused by tablets and liquids.

 

I understand your mixed feelings about your doctor and it's justified. For me, I've moved on to "I'll take any opportunity I get to educate a doctor". If a doctor shows interest and wants to learn, you have the potential to save someone else from this nightmare. How amazing is that!

 

You're making so much progress on your healing and on planning your next step. I can't believe it's such a big turnaround in such a short time!  :smitten:

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Thank you for another good news update, rascal4ever.  You are definitely on a roll!

 

I wonder if the pharmacy didn’t have the diazepam oral solution in stock so had to order it before they could ‘release’ it?  Or, it could be they aren’t familiar with this particular dosage form so may want to double-check how to label and dispense it.

 

I agree with jelly baby that we should take any opportunity we get to educate prescribers.  You are indeed fortunate to have a doctor who is interested in learning more! 

 

I’ve included a link below to a document she might find of interest. It is evidence-based, current, and concise. It also has now been endorsed by the two major benzodiazepine advocacy groups in the US — the Benzodiazepine Information Coalition and the Alliance for Benzodiazepine Best Practices.  (Don’t be dismayed by the words ‘Drug Abuse Prevention’ in the names of the primary organizational authors. The document makes it very clear that physiologic dependence is not synonymous with abuse/addiction.)

 

Link:

 

Benzodiazepine Deprescribing Guidance Document (target audience is prescribers)

https://corxconsortium.org/wp-content/uploads/Benzo-Deperscribing.pdf

 

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Libertas-

 

I read the article you sent via a link- thank you. It was personally validating, relieved me of some frustration regarding lack of useful information for doctors, as well as summarized a number of things I have learned this past year (also a couple of things I didn't know such as "tapering strips" from Europe...hmmmmm  :o). I found it to be clear, concise and up to date (as far as I know) as well as potentially helpful to whatever medical providers will read it.  I sent it to my provider (one of them).

 

I noticed it did not mention Benzobuddies.org, however, when speaking of peer support or other online resources. Do you know why? (I briefly looked at The Withdrawal Project (which was mentioned in the article), and it appears it's not online support, but rather a way for people to connect for potential in person engagements. Of course I didn't read a lot, so may not have that right.

 

I mention this because I have let my provider know about Benzobuddies and the assistance I have valued here, yet this article does not speak of it. To me this suggests that doctors utilizing the article wouldn't know of a valuable resource for their patients.

 

I realize BB might be embedded in another source mentioned in the article, or that the article can only tell of research based material (perhaps TWP is more empirically based?). Finally, it might be that there are competing online support communities and the writes did not want to jump into the mix.

 

Any thoughts?

 

thanks again,

Rascal

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Greetings, rascal4ever.

 

Thank you for your thoughtful analysis of the Colorado Deprescribing Guidance document. I agree with you that it has the potential to help prescribers better understand how to work in partnership with patients who wish to discontinue their benzodiazepines.  I’m delighted you shared it with your provider.

 

Your question about why BenzoBuddies is not mentioned as a peer support resource is an interesting one.  One possibility is that BenzoBuddies is already identified as a resource on the websites of BIC, the Alliance, and easing anxiety.

 

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Libertas,

 

That's a good point. Thanks for mentioning this.

 

I also realized the article links to something I didn't read regarding peer support. I will read that.

 

Rascal

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Hi Libertas - I found again the mention of:  “see peer support document” but was not able to locate this in either the article or the reference material. So many mysteries 😝. (I’ll just have to be content that I’ve located BB peer support for myself).

 

Hope you’re doing well,

Rascal

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Hello again, rascal4ever.

 

Your desire to learn more about deprescribing (discontinuing) benzodiazepines is admirable!  I’ve included links below to the Benzodiazepine Peer Support Document as well as the landing page for the workgroup that developed it.

 

Links:

 

Benzodiazepine Peer Support Document

https://corxconsortium.org/wp-content/uploads/Benzo-Peer-Support.pdf

 

Benzodiazepine Action Workgroup

Colorado Consortium for Prescription Drug Abuse Prevention

https://corxconsortium.org/work-groups/benzodiazepine/

 

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