Benzo taper, tough times@!

[[Ri...]]

I am 18 months into my benzo taper. Familiar story, was put on .5 mg klonopin 2x a day in my twenties for anxiety/depression. Had a few issues over the years but for the most part have been stable. Fast forward im now 68. Psychiatrist retired. New NP insists I get off of these. .125 tapers every two months until where I'm at which is .225mg 1x a day. The klonopin is being compounded into a liquid. Not going well. Depression, anxiety, insomnia, agitated and feelings of hopelessness. Very afraid I won't get through this. A few short waves where I felt normal for a day or two but the rest are tough. Is there another side to this? I'm beginning to wonder. I'm not sure why we are forced to do this when we are stable and doing fine. 

[[Co...]]

Hello @[Ri...]. Welcome to BenzoBuddies.

Why is your NP insisting that you quit Klonopin? It happens a lot now, but I am interested in learning the explanation/rationale used by the NP.

The good news is that taper schedule is generally sensible. Too often, we see people on similar doses to you forced to taper a dose such as yours in matter of weeks. Have you been liquid and tapering off at the rate from the beginning of your taper?

Having said this, there is great variability too in what is a manageable taper rate for the individual. Ideally, you would be able to make new reductions as when you feel able. Having a goal is great (a plan), but flexibility is very welcome too (at least for most going through withdrawal of benzodiazepines).

Have you discussed the possibility of slowing your taper rate with your NP?

[[Ri...]]

We have slowed the taper to 10%, I have been holding for 2.5 months. Symptoms are getting worse not better. NP believes everyone will feel better when they are off the benzos. Not much negotiating there. Also on mirtazapine 30mg 1x a day. She would like me to start vilazodone 10mg 1x a day as a bridge med. I'm afraid to start it. 

[[Ri...]]

She also gave me the standard, higher risk of dementia, higher risk of tripping and falling etc.

[[Ri...]]

Also terrible dizziness, spacy feeling in my head. Most or all of my symptoms leave during shor windows. And they are short. Sometimes less than a day.

[[Co...]]

@[Ri...]

I am all for a discussion about continuing or tapering off benzodiazepines after extended use. They are regularly prescribed indefinitely rather than temporarily (which should be the practice in most cases). However, it has become increasingly common for patients to be forced off after extended use. I don't feel this is right. There is very often a failure to appreciate that there are (potential) problems arising from withdrawal, and this too should be factored into the equation.

Having said all that, there are many potential benefits to quitting too. So it would be best to concentrate upon those. And at least your NP is amenable to adjusting the taper rate - many doctors are not.

I've not taken mirtazepine or vilazodone (or medicines like them) - some other members would be better to comment on those.

[[On...]]

I think you are doing well, and it will be worth it. It is no life relying on depressant/sedatives for anxiety, it's affect on gaba receptors is insane.

No quick fix for mental health issues. It's amazing how your brain and body can heal, and hope is the best antidote. 

Yes longterm prevents memory problems, risk of dementia, more resilience and the ability to feel more may be pretty harsh at times now, but in the future being present will be a gift. 

I hope your symptoms and mental health is managed effectively, and your life can really begin without these blockers. 

[[Cr...]]

10 hours ago, [[R...] said:

She also gave me the standard, higher risk of dementia, higher risk of tripping and falling etc.

I feel like she should have let you assess the risks of coming off vs staying on and left the decision up to you. Most particularly since you have been on klonopin for around 40 years and I assume have not had any major noticeable issues.

However, as stated by @[Co...], there are potential benefits to coming off of benzodiazepines. It may take awhile to come off and fully recover from the withdrawal effects, so try to always keep that in mind whenever you find yourself worrying about certain symptoms you are having further down the line and questioning why you still feel quite ill.

Awareness of the potential risks that benzos pose in terms of suffering has greatly increased within the new millennium. While this change is much needed in regards to preventing future patients from getting dependent, it is also coming at the cost of long-term benzo users (especially the elderly) being forced off their benzos against their will and often at taper rates that are too fast.

As the older generation of doctors retire, and the newer generation takes hold, I imagine situations like yours will become exponentially more numerous.

[[Pl...]]

.25 is so close to freedom, I'm at .9 right now and would kill to be back down there 

[[Ri...]]

I realize my .225mg is close to freedom but I'm miserable. Hoping for better days.

[[Co...]]

8 hours ago, [[R...] said:

I realize my .225mg is close to freedom but I'm miserable. Hoping for better days.

It'll be worth it. I hope you gain some relief soon.

[[Ri...]]

Saw a new doctor today. I am switching. We are going to reverse taper and slowly increase until I stabilize then hold indefinitely. He agreed that making elderly patients miserable when they are stable should be the patients choice. We are talking quality of life here and I already have given up a year and a half of my sunset years to this withdrawal. I may taper again in the future and hope to stabilize at one half of my original dose. .5 mg per day. That is a big win in and of itself.

[[Li...]]

@[Ri...]

I’m sorry the NP forced you to taper, but glad you’ve found a new prescriber who values patient voice and shared decision making. 

I read in another one of your posts that you think the liquid compound you are using is the cause of your current distress.  An alternative explanation is that your taper rate exceeded your personal speed limit and you ‘crashed and burned’.

Your first reduction from 1 to 0.875mg was a 12.5% decrease (which is a bit higher than our ballpark guideline of 5-10% but still reasonable).  However, your reduction from 0.375mg to 0.25mg was a whopping 33.33% reduction.  Ouch! 

I share this with you in hope it will give you hope that you still may be able to discontinue the clonazepam at some future point if you so desire  — you’ll just need to be careful to find a taper rate that is tolerable and can be adjusted as needed. 

 

[[Ma...]]

2 hours ago, [[R...] said:

Saw a new doctor today. I am switching. We are going to reverse taper and slowly increase until I stabilize then hold indefinitely. He agreed that making elderly patients miserable when they are stable should be the patients choice. We are talking quality of life here and I already have given up a year and a half of my sunset years to this withdrawal. I may taper again in the future and hope to stabilize at one half of my original dose. .5 mg per day. That is a big win in and of itself.

I think you are doing the right thing. I am 62 and on a big hold of a taper off tranxene (milder than valium) that I started a year ago. Even though I was going really slow I found myself afraid of flying again (something I had got over a long time ago) among other nasty symptoms. Then I decided I would hold until I felt quite strong again, but I may not try again and stay at 10 mg indefinitely. I don’t know really, but what I do know is that the older you are the older your cells in your body are, of course, and any changes are more difficult, take longer and make you feel worse. One may feel young at heart but there is no magic in biology. After all these years of taking benzos and ADs  and feeling fine on them it is not such a big deal to go on. Life must be enjoyable and we haven’t got a lot of time before getting really old, if we are lucky enough to live to that point. Good luck and take care.

 

[[Ri...]]

Thank you so much. It was a hard decision, I hate going backwards but the withdrawal symptoms were just getting too hard. I was battle weary. I may try again after a long stable hold.

[[Ri...]]

2 hours ago, [[L...] said:

@[Ri...]

I’m sorry the NP forced you to taper, but glad you’ve found a new prescriber who values patient voice and shared decision making. 

I read in another one of your posts that you think the liquid compound you are using is the cause of your current distress.  An alternative explanation is that your taper rate exceeded your personal speed limit and you ‘crashed and burned’.

Your first reduction from 1 to 0.875mg was a 12.5% decrease (which is a bit higher than our ballpark guideline of 5-10% but still reasonable).  However, your reduction from 0.375mg to 0.25mg was a whopping 33.33% reduction.  Ouch! 

I share this with you in hope it will give you hope that you still may be able to discontinue the clonazepam at some future point if you so desire  — you’ll just need to be careful to find a taper rate that is tolerable and can be adjusted as needed. 

Thanks so much.

[[Li...]]

You’re most welcome, @[Ri...].  There are many advantages to using a liquid to taper high potency benzodiazepines like clonazepam/Klonopin, especially at lower doses.  I didn’t want you to ‘throw out the baby with the bathwater’ by attributing your problems solely to the liquid when it’s possible (perhaps even likely) that your issues were due to the fact that your taper rate had increased over time to an intolerable level.  

If you do decide to taper at some future point, I strongly encourage you to consider making proportional rather than linear reductions in dose.  Proportional means that each reduction is calculated as a percentage of your most recent dose, not your original dose.  Consequently, reductions get smaller as the total daily dose gets lower.

The approach your NP used was a linear taper.  She reduced your dose by a fixed amount (0.125mg) so your taper rate increased as your dose got lower.

Edited July 11 by [Li...]
Clarification

[[Ma...]]

10 hours ago, [[R...] said:

Thank you so much. It was a hard decision, I hate going backwards but the withdrawal symptoms were just getting too hard. I was battle weary. I may try again after a long stable hold.

I’m sure you will stabilize, sooner or later. Patience and distraction are your best allies and not worrying about time and number of miligrams is also fundamental. Once you feel fine again there is always time to try a very slow rate taper based on symptoms and without a rigid schedule. My taper so far has been quite bearable, the only thing is that I can put up with a lot of things but panic and agoraphobia, so, although most of withdrawal symptoms are a thing in the past by now, I feel reluctant to go on with my taper until I am able to feel ‘normal’ on a plane, this is my ‘red line’. On the other hand,it feels great to have lowered my benzo dose, and, although I might have sounded a bit pesimistic in my first post, I am an optimistic person and I really think I may be able to reduce my dose even further. Don’t forget to get us informed of your progress.