Tapering - 5mg original (long term) dose

[[Bi...]]

Hello 

Today I am quite emotional, and at my wits end. I hesitated in writing this post because I am having a day where my cognition is highly affected. 

A bit of my story for context prior to taper questions: 

I was prescribed 5mg diazepam for anxiety 8 years ago. I have been taking the same dose for that duration. 
 

At the beginning of this year I had decided that it was time to stop. Realistically, I had the thought last year, but as it is such a usual part of my life, I didn’t act straight away. 
 

In April this year, under the illusion that “5mg is a small dose therefore little impact”, I didn’t bother with weighing or measuring, and started to quarter my 5mg tablet. I was haphazard for about six weeks when at the end of May I had my first even episode of vertigo. I thought I was dying. That vertigo turned into 4.5 months of excruciating withdrawal symptoms. I could not function at all. I had referrals for a neurologist, ENT, and cardiologist. I underwent extensive cardiology investigation whilst waiting for the specialist, along with regular vestibular audiology testing/measurement. I was at approximately 3mg or just under. It was during this time that I was able to at least do some research. It became obvious that I was in intense withdrawal. I also realised I had been in some level of withdrawal for many years. 
 

My GP retired, and new GP along with each specialist individually prescribed a new drug in order to cover the symptoms. I knew better at this stage and have not taken anything further. Not one specialist acknowledged the withdrawal. I was looked at like I am mad. One of the single most isolating experiences I know we feel. To feel our absolute worst. And not be heard and therefore feel as though there is no hope or help. 

I looked into the Maudsley deprescribing guidelines and reached out to some helpful people I had found. I held for two months at 2.75mg. I bought a scale and weigh my tablets (to obtain an average) and do the appropriate calculations. I do not have questions on the method or calculations. It is more the tapering schedule itself.
 

I went to 2.70mg and stayed for 17 days. I felt ok, so thought I would jump to 2.65 then 2.60 within 10 days. Big mistake. I became bedridden and non functional. It seems I can move the dial only at 0.05mg (about 1.9%), and hold, for at least 17 days. 
 

I am still finding it a challenge to accept that this will take me quite some time to stop. I have found I am obsessing over decisions relating to the taper. Ideally I would like first to get to 2.5mg. I have read the Ashton manual and have also become quite fixed on “I cannot heal until this is out of my body”…couple that with the 12month ish possible journey and the hope starts to fade. It doesn’t help when there are many days of non function. 
 

back to the taper. Has anyone tapered from 5mg long term use? I would love to hear your experience and any suggestions around developing some sort of schedule. I do have the ability to do 0.03mg drops every 7 days, and wondered if that might be smoother, given my inability to take larger leaps. 
 

Thank you. 🙏 

 

[[El...]]

@[Bi...] So sorry you are having a difficult time.  But I completely understand your struggles!

I also am needing to proceed at a much slower pace and come to terms with the reality that this taper will take me another 10-12 months.  But the fact that I have made several attempts to speed up the process, all resulting in severe (but not as severe as you havd outlined for yourself) withdrawal is making me come to terms with what I, personally, am able to handle in terms of pace/withdrawal.

I am not on diazepam...rather Ativan.  I was switched to 3 mg Ativan (roughly equivalent to 30 mg diazepam) after 35 years on Xanax.  I have now tapered to 0.332 mg.  Early in my taper I found I could not even handle a 2% reduction "in one go".  I have gone through several variations, but currently I reduce approximately 0.001 mg per day for 10-14 days sequential days.  Then I hold for a few days to allow my system to "catch up".  This allows me to reduce at a rate of 2-2.5% per week.  I will need to reduce that number of sequential days soon to not exceed that percent.

I am not sure any of this information is helpful...but just a brief description of my journey to the realization that it is going "to take as long as it takes".

[[Bi...]]

Thank you @[El...] it is very helpful to know. 
I have been quite self berating about my inability to taper beyond (approx 1.8%) at a time. I had a chat with a coach last night and was reminded there are no comparisons (which has led to my negative self talk/frustrations), and that everyone’s journey is unique to them.

that is amazing. Have you started to feel better during the process? With some brighter days? 
 

I read though my journal last night. It seems fairly consistent that around D17 post cut that I’m starting to feel ready for another cut. I referred back to the Ashton manual and it was interesting to read that Valium half life is approx 200 hours (8.3 days). That seems to indicate that my body feels “ready” once the full life of that cut has cleared. 
 

Have you done holds during your taper? I did find it effective, especially after such a horrendous few months of not being able to function much. I feel I am hanging on the mountain to get to 2.5mg! It is my first goal.

i had wondered last night if the sensible thing would be to do 3 lots of 0.05 cuts (which is what I can presently tolerate), over 17 days each. I will then reach (all going ok) 2.5mg mid/end Jan. 

The 2-2.5% - I have heard of this also. I know some folks do it weekly for 4 weeks then hold. When were you able to shift the dial a bit more from early on when the 2% was too much? That is the stage I am at currently.

thank you 🙏

[[Ma...]]

Just wanted to come here to say you can do this.  It does at times seem like it’s never going to end and the taper can become a source of incredible frustration.  I’m jumping today after a 17 month taper that has been awful and completely debilitating at times.  I was on the equivalent of about 20 mg of diazepam for 10 years.  So you CAN do this.  You are already close to 2.5 which is a great accomplishment.  Try not to think about the time it’s going to take.  Your body will let you know when it is ready to cut your dose again.  

[[El...]]

@[Bi...] Good morning!

I know how easy it is to fall into the trap of "I'll just go a tiny bit faster...it will be OK".  So, I completely understand. 

A bit more of my history.  I was tapering fairly haphazardly (in the range of 2% to 3% every week or two by the cut and hold method) from the beginning of my taper in late April 2023 to about mid-August.  I became quite ill, so I ended up holding for 6 -7 weeks.  At that point I started my microtaper, never exceeding 2.5% until.....a period from late February through the end of March last year when I tried to bump my weekly percentage up to 2.6% to 3%%.  By the beginning of April, I was doing...let's just say "not great".  I reduced my percentage to 1.8% for 2 weeks, but I still felt unwell.  I ended up having to hold for a few weeks to restabilize.  Since then, with the exception of my hold when transitioning to liquid Ativan, a hold during cataract surgery, and a couple of very short holds while transitioning to using a micropipette, I have been steadily keeping my percentage no greater then 2.5% (and I actually feel much better at 2%).  I just know that I cannot exceed 2.5%.  I have a suspicion that I will soon reach a time that I cannot exceed 2%.  I still always include "mini" holds every 10-14 days.

I guess I write this hoping you know that each time you reduce 0.05 mg, your percentage reduction increases from 1.92%...to 1.96%...to 2%. These might be insignificant.  But just a note you can make for future reductions.

Hope you are feeling well today!

[[Bi...]]

7 hours ago, [[M...] said:

Just wanted to come here to say you can do this.  It does at times seem like it’s never going to end and the taper can become a source of incredible frustration.  I’m jumping today after a 17 month taper that has been awful and completely debilitating at times.  I was on the equivalent of about 20 mg of diazepam for 10 years.  So you CAN do this.  You are already close to 2.5 which is a great accomplishment.  Try not to think about the time it’s going to take.  Your body will let you know when it is ready to cut your dose again.  

@[Ma...] thank you!! It is such a fine balance of many things isn’t it. Managing our new threshold of patience we must have, symptoms that come without rhyme or reason and whack us behind our knees, and then holding the hope - while trying to live some semblance of life in the mix of it all. 
it occurred to me that my brain never really got the time post stroke / ischaemic optic neuropathy to heal. 18 months later I started the Valium journey. Whilst I made a physical recovery (other than partial peripheral blindness in one eye), I just know my nervous system changed then. 
I have also been on other meds previously, which I’m sure contribute to my physiology.

how are you feeling? Have you had better days as you reduced and now ready to jump? 
 

thank you very much for your words. It means a great deal. 

[[Bi...]]

7 hours ago, [[E...] said:

I know how easy it is to fall into the trap of "I'll just go a tiny bit faster...it will be OK".  So, I completely understand. 

@[El...] yes!! Or, a day might go well and the brain assume “we’ve got this. We can push this now”. 🙄

I reasonate very much with your story. My haphazard this year was how I ended up having to fly interstate for three different medical specialists. I was a very very unwell person. And then angry. That this can happen, and is happening to so many, yet still not recognised by the prescribing profession. 
 

Yes, on the 0.05, I have considered the hyperbolic tapering. I worked out it is quite the shift once I get to 2mg. I am also aware (per the Maudsley guideline) that smaller doses generally have greater effect on the brain. There is a great diagram I will need to find and share. Part of desperately wanting to get to 2.5mg is that I can just split one pill in half over two days! It gives a break from the weighing and cutting. Also, as you’ve mentioned with the holds, I am likely to hold there for a month or two and see how I feel and if I can shift the dial in the tapering. 
 

in terms of how I’m feeling, this week I’ve experienced my first bout of intense emotion. Like an exploding volcano out of nowhere! I am also struggling with capacity. I am grateful I can use my brain a couple to a few (up to 3) hours a day at times, but I do pay for it. Extreme fatigue in the afternoon, poor cognition, and very often memory loss. I am trying to listen to my body. Yesterday I was able to do quite a few things, so I kept going. By evening it was like I was a dialled up energiser bunny - nervous system on edge, pupils dilated. It was actually a good lesson! My nervous system cannot take on so much. So it’s small steps of activities. After these types of days, I find it most difficult the next day. It is as though my senses are dialled into hyperdrive and opening my eyes in the morning, looking around and taking in my surroundings overwhelms my body. I can feel quite nauseas on these days and very dizzy. 
 
how are you feeling day to day? And with the reductions, at 2-2.5%, has that helped you stay fairly steady? 

Edited December 12, 2024 by [Bi...]

[[Bi...]]

7 hours ago, [[M...] said:

Your body will let you know when it is ready to cut your dose again.

@[Ma...] and also this part is quite important isn’t it. 

[[Ma...]]

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

how are you feeling? Have you had better days as you reduced and now ready to jump? 

I have.  I jump today and can honestly say I feel pretty good.  I’ve still had little blips of anxiety and not great sleep but nothing like when I was in the thick of my taper.  

[[Bi...]]

@[Ma...] congratulations! Do you post in a particular feed on your progress? I would be keen to follow. 

[[Ma...]]

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

@[Ma...] congratulations! Do you post in a particular feed on your progress? I would be keen to follow. 

I’ll hopefully do a success story at some point.  Want to get a couple weeks under my belt first.  Most of the stuff I’ve posted has been in the tapering feed but I won’t be doing that anymore most likely unless giving advice to someone.  I plan on sticking around but probably won’t be on as much as I have been.  I think it’s important for my recovery to take little breaks from BB.  

[[Tr...]]

 

Hi @[Bi...], I really feel for you! 

 Hereby the inspiring story of another buddy, who tapered Valium. I hope that it will help you and reassure you to listen to your intuition and body and finish successfully your taper. 

Wishing you a smooth and uneventful last part of your taper! 

 

[[Bi...]]

@[Tr...] thank you so very much for finding this and sharing it with me. It means a great deal. You are very kind. ❤️