Question about holding

[[El...]]

I have been rapidly tapering since the beginning of March-first because of ignorance (until I found BB!), then because my perscriber is pushing for a very rapid taper.  I have been searching for a new prescriber who will not ask for a such a rapid taper and I am on two waiting lists.  But, I think due to this rapid taper, I have developed some pretty painful symptoms.  Starting the end of May, I began developing tingling and numbness in my lower legs and feet.  This has progressed to pretty severe nerve and joint pain over my whole body.  Any movement has been extremely painful.  My teeth and hair follicles even hurt!

I decided to hold my present dose on August 8.  I am still holding.  The last couple of days, my symptoms have been markedly improving.  Today, I had to help my husband in the garden with a small piece of machinery.  When, I came inside later, I felt so much better!  I have always been an avid swimmer and enjoy long distance hiking.  I have had no exercise for a couple of months now because of the extreme pain.  I really could barely walk.  So, my question is, because I felt so much better after that little exercise I had today, is it safe to stop holding?  Or should I hold longer while trying to gently start exercising again?  And if so, how much longer should I hold, or to what degree should I see a decrease in symptoms before resuming my taper?  I have an appointment with my doctor in 2 weeks.  He is not going to be happy if I have not tapered at all.  As an aside-I find it so very frustrating that doctors do not get this!  I was crying in pain last time I saw him and he said he still expected, at the least, a 10-15% decrease by my next appointment.  Even my pharmacist scolded me (if front of the whole store!) last time I picked up my perscription!

Anyway, any suggestions or comments would be greatly appreciated.

[[or...]]

@[El...] I hear your quandary. You feel better . . . you've been holding for 17 days. Should you start tapering again? Hmm (just ignore that doctor and your pharmacist -- this is YOUR taper and it has to be led by how you feel, not some rigid percentage reduction). I "traded" my psychiatrist and his overly ambitious schedule for an NP and we quickly came to a meeting of the minds. When I got "in the weeds" the first time, I held for a month, with her blessing. I started to feel better (my main w/d s/x was malaise and nausea) after 3 weeks and at her suggestion, I just made it a month. Whew! She was great . . . she made sure I had all the valium I needed, and that extra week was very helpful. So should you resume tapering, or wait a little longer? If it were me, I'd wait a little longer just to be sure. What's the downside of a few more days? Maybe make it 3 weeks? It's a nice round number that you can remember. Yes, our goal is zero, but we need to get there feeling as functional as possible. As my NP used to say "as long as the general direction is down" she'd support me. I had quite a few holds along the way, but I had her support. No "hold-shaming" from her. Now, about that doctor who is not going to be happy. Can you advocate for yourself and make him understand that YOU need to be in charge of your taper? He ought to be delighted that you feel better after your hold. Sheesh. Anyhow, those are my suggestions: listen to your body and take all the time you need to feel better.  I'm delighted that you feel better after your hold. Best wishes.

[[mc...]]

https://www.oregon.gov/oha/HPA/DSI-Pharmacy/MHCAGDocs/Talking-With-Patients-About-Benzodiazepines.pdf
 

state of Oregon deprescribing guidelines. There is a link in the document for more info too. Show this to him and tell him the upcoming federal guidelines will be similar. It’s really none of his business how slow you go. 

[[El...]]

Thanks for your replies.  Unfortunately, l woke in the middle of the night which very agonizing leg, joint, nerve, etc pain.  It feels like hot acid is running through my veins.  Perhaps it was a small window I was having the past few days, as the pain is continuing with a vengenence today.  So, I will continue to hold for as long as it takes-probaby at least 2-3 more weeks.

Thank you for the article from Oregon.  I will definitely have to "gird my loins" before seeing him again.  When I am in a lot of pain, I get very weepy.  I think people, and my doctor in particular, takes advantage of this.

[[de...]]

It sounds like holding for a little while might be a good option for you.    You say your doctor is expecting at 10%-15% decrease at your next appointment.   How many weeks until your next appointment?   Generally, it is recommended to taper 5%-10% every two weeks.   But more importantly, you need to listen to your body and let it guide how and when you make your next reduction.  

 

[[El...]]

Thanks for replying.  Not heeding what my body was "screaming" at me is what got me in this awful place.  My last appointment was on August 15.  I was one week into my hold at that point.  My next appointment is September 12.  I really think I should still be holding or maybe just ending my hold at that time (depending on my symptoms).  So, in that case, I will have not made any reduction.  While disappointing (because, of course, I want off this drug asap) I just really need to feel better so I am ready and willing to take (hold) as long as it takes.  My doctor, I know will expect me to be down at least 10%.  Since I have always met "his" goals, I guess I am not sure how he will react.  I fear, not pleasantly.

I guess I just do not trust doctors who perscribe these types of drugs to act rationally.  By way of history, I was dropped by my last doctor in late March because I could not and would not follow her taper plan of 25% reductions every 2 weeks.  She insisted that was standard protocol and she could not work with me if I was not compliant.  This doctor is somewhat more reasonable, but still pushing me too fast.  It is baffling to me that doctors will perscribe these drugs for years without seemingly blinking an eye.  Then they have a patient who is making a good faith effort to taper and they just hound them. 

Anyway, enough complaining.  I will hold as long as I need to and see what my doctor says...hoping for the best!

[[El...]]

Back again with additional questions.

I am still holding from 8/8.  My tingling and numbness in my feet and calves has largely disappeared.  However, the severe pain in my back, hip and thigh continues.  I thought the pain may be due to lack of exercise.  So I took a short walk a couple of days ago and it really put me in the weeds.  The pain has exponentially increased!  Also, I have developed tittitus in my right ear.  And my previously somewhat controlled nausea and vomiting have returned.  Is this normal during a period of holding?  Should I expect any improvements?  Or should I try a small reduction?

Thanks for any comments or suggestions.

[[Sw...]]

A part of me, though I am not an  expert or veteran, would think you might be experiencing tolerance withdrawal. If you have had some improvements in some places and worsening or new symptoms in other places your brain is trying to rewire itself, that's just what I think personally. I also have tinnitus in my right ear. well both ears but it's just the right ear that bugs me.  But my thought, because I had tolerance withdrawal for 1.5 years and a lot of stuff healed, and a lot didn't, while I was still on the benzo in that 1.5 year period- what your saying just makes me think you're in withdrawal now, and need to try and taper down. Obviously I can't tell you what you need, only you can, I just wanted to offer my thoughts. It WILL get better! I had SO MANY SYMPTOMS and I was symptom free for a good long while after healing, but then I reinstated twice years later and am having withdrawals so I came here for support. 

[[El...]]

Thank you so, so much for replying!  I am so confused about these symptoms.  My gut reaction is that you are correct.  But, I don't really understand tolerance withdrawal.  Would you mind explaining it further?  Would you mind giving me an an example?

I do so appreciate your comments.  And welcome to BenzoBuddies!

[[Pa...]]

On 27/08/2023 at 14:01, [[E...] said:

It is baffling to me that doctors will perscribe these drugs for years without seemingly blinking an eye.  Then they have a patient who is making a good faith effort to taper and they just hound them. 

This baffles me as well, you obviously want to discontinue the drug, I don’t get why some doctors have to make it so much more difficult for us to the point of not being able to function. 

Here is some information about tolerance withdrawal but the problem is, sometimes our situation doesn’t fit every box so we may not be able to find exact answers to explain how we’re feeling.  

https://www.benzoinfo.com/tolerance/#:~:text=The tolerance or “tolerance withdrawal,long-term control of epilepsy.

[[El...]]

Pamster

Thank you for the article.  This article, as well as others I have read, seem to indicate that tolerance withdrawal only occurs when a person are taking their regular dose and the benzo just does not work anymore.  This is point where people often updose, I think.  But I have not found any information on the occurance of tolerance withdrawal while tapering...or while holding.  But, I read about it all over this site.  Some people say that resuming their taper helps to relieve some of their symptoms.  Of course, I know each taper is individual to each person.  So my question is, in your opinion, should I give this a try (resuming my taper slowly) or will it undo all my days of holding?  Each day during the hold, I seem to be worsening and more new symptoms are popping up each day.  Today is almost unbearable.

Anyone else can chime in if they choose.

Thanks.

[[Pa...]]

I hope others will chime in because I don’t have taper experience and as you mentioned, some members report feeling better once they resume their taper.

 My feeling is, what is happening to you now is unsustainable, you’re getting worse the longer you hold and if updosing it out of the question, then resuming may help.  I wish we had definitive answers for you because we understand that not having them means pain, you’re the subject in this nasty experiment.  It’s sad that after 68 years the scientific community still doesn’t know how to get us off of this medication and we’re left to find our own way. 

[[An...]]

On 25/08/2023 at 20:42, [[o...] said:

@[El...] I hear your quandary. You feel better . . . you've been holding for 17 days. Should you start tapering again? Hmm (just ignore that doctor and your pharmacist -- this is YOUR taper and it has to be led by how you feel, not some rigid percentage reduction). I "traded" my psychiatrist and his overly ambitious schedule for an NP and we quickly came to a meeting of the minds. When I got "in the weeds" the first time, I held for a month, with her blessing. I started to feel better (my main w/d s/x was malaise and nausea) after 3 weeks and at her suggestion, I just made it a month. Whew! She was great . . . she made sure I had all the valium I needed, and that extra week was very helpful. So should you resume tapering, or wait a little longer? If it were me, I'd wait a little longer just to be sure. What's the downside of a few more days? Maybe make it 3 weeks? It's a nice round number that you can remember. Yes, our goal is zero, but we need to get there feeling as functional as possible. As my NP used to say "as long as the general direction is down" she'd support me. I had quite a few holds along the way, but I had her support. No "hold-shaming" from her. Now, about that doctor who is not going to be happy. Can you advocate for yourself and make him understand that YOU need to be in charge of your taper? He ought to be delighted that you feel better after your hold. Sheesh. Anyhow, those are my suggestions: listen to your body and take all the time you need to feel better.  I'm delighted that you feel better after your hold. Best wishes.

Ditto to what @[or...] said. You have an excellent NP katz. My PCP is the same. He supports me fully. I now think 3 weeks to one month holds at 5-10 % reductions are better for those of us who are super sensitive.