Benzo taper No docs willing to assist

[[Ha...]]

Apologies if I'm not formatting this right, its my first post, my brain is screaming and hands shake.

Been on  benzos off and on about 50 years, started for showing teen symptoms of a ( I'm omitting a possible trigger) age 3-18 'home'. Was repeatedly pulled on & off Valium ( 4 mg/ day in 120# teen female), later Librium, Clonazepam etc. 

Got a diagnosis of a slow but ( eventually) terminal blood cancer 14+ years ago. After a month of specialty personalization on various ways to cope, got put on a non varying med regimen: Clonazepam 1 mg qid, and opioid qid( name omitted to avoid possible triggger). 

With exactly that ( no varying, taken as prescribed ) I completed a total 20 year ( 6 year pre cancer diagnosis) healthcare career.  I did very well until COVID, when my deteriorating immune function meant I took disability.

I did from home volunteer stuff and enjoyed art. Last year an ear infection ( eustachian tube) infection took over my throat then lungs then body. I stopped breathing three times in a month ( saved by family+ EMT), with multi-day hypoxic critical care stays, diagnosed " metabolic encephalopathy secondary to severe sepsis ( wbc 29.2 was one  I recall), multifocal pneumonia and multi organ failure". I lived and have slowly gotten better. 

Then my doc abruptly announced she was stopping the benzos because of a complaint from a ( not treating me) doc from the first admission.

When my doc announced her superspeed taper, I had a family member advocate, and later a union attorney RN advocate. I also had a supportive of me oncologist, and one of my states only pain med use specialist supervisor MDs who manages my steady state pain meds. However, in our tightly knit community, neither my oncologist nor my pain treatment doctor was willing/ professionally in a viable position to take over the benzo taper or prescription. 

I've contacted the resources on site here as of about a month ago, and been told they don't " do that." I think its likely because from the start purely pain relief meds came from my specialist, and the benzos came from my family doc. Despite the unvarying 14 year history of thriving on that regimen, no one is willing to taper the benzos slowly. Witt- Doerring doesn't practice in this state and my multi year ( post COVID start) disability has stretched $ too far for me to move.

I've watched videos on how to work with  our doctors, how to negotiate, etc. My family doc absolutely will not vary her schedule despite my new symptoms including akesthesia. I'm not suicidal. I do easily see how if things got worse ( now I'm at 10 mg once daily, with non variable every 3 week 1 mg drops and  an expectation I'll CT at 3 ng/ day) then I could understand the losses of akesthesia sufferers.

Mostly I feel deeply depressed, as I have since at the start my fam doc " exchanged" Clonazepam for Valium. It didn't match Ashton and she was then cutting weekly when she even remembered to fill ( yes, I left messages ) I've gone weeks without any sleep ( maybe 10 minutes a day). I saw a neurologist who dismissed me " I'm sure you are sleeping". A sleep test showed I woke 60 times an hour. The constant Cortisol flood has so depleted the system that an endocrinologist tells me 3 tests show a dangerously low Cortisol (2.1). Which means if I get COVID or any major infection, my body won't be able to regulate the cytokine storm and that will kill me before infection itself. And so on. My lifespan is estimated at 1-3 years so 10 years healing after these-plus of torture isn't helpful. The state college - with- med center wont take me as its not an " internal referral."

**Any suggestions for a slow  pr guided taper for a Pacific North West resident?**

Also ...... This " death by torture" seems real unfair. I can't have the IVIG my oncologist wants for me because of the constant SNS cascade, so I do have an expiration date, short of a miracle.

Ive done healthcare of others all my working life. But, My fam doc literally told me when I did say its unfair " you ARE getting old." Yet * her* expressed plan is to " die in comfort" (when her time comes).

I've never let a patient suffer in my life if I had any ability to change things. Born to ( trigger omitted) death by torture after a life helping the ill? I get life isn't fair.  Its just ...  

[[Co...]]

Hello @[Ha...]. Welcome to BenzoBuddies. I wish it was under a less extreme situation.

Are you familiar with The Maudsley Deprescribing Guidelines? I ask, just in case, this might shift the view of your doctor.

https://www.wiley.com/en-in/The+Maudsley+Deprescribing+Guidelines%3A+Antidepressants%2C+Benzodiazepines%2C+Gabapentinoids+and+Z+drugs-p-9781119823025

Have to tried finding another GP who is willing to continue your medication?

The problem is that no one here can help devise a better taper plan when your prescription taper dose is so limited. Maybe another member will have some suggestions for you. Do you mind sharing in which state you are located?

[[Li...]]

Hello @[Ha...].  I’m so sorry this is happening to you.

 

You’ve indicated you do not live in one of the states where Witt-Doerring is licensed.  So that takes California, New York, and Texas off the table.  Do you live in one of these states — Colorado, Florida, South Carolina, Michigan, Virginia, Arizona?

Have you tried contacting Psychiatric Nurse Practitioners in your area? 

Would your current prescriber be willing to consult with Dr. Mark Horowitz, one of the co-authors of The Maudsley Deprescribing Guidelines (Horowitz & Taylor, 2024) @[Co...] referenced?  (Note: There would be a charge.  Also, he’s very busy.)

Have you shared the FDA boxed warning with your prescriber?  It states:

“Abrupt discontinuation or rapid dosage reduction of diazepam tablets after continued use may precipitate acute withdrawal reactions, which can be life-threatening. To reduce the risk of withdrawal reactions, use a gradual taper to discontinue diazepam tablets or reduce the dosage.”

You could then point to The Maudsley Deprescribing Guidelines as current best practice for implementing a ‘gradual taper.’

 

[[Ca...]]

I believe Josef is also working with patients from NJ, PA and GA.