Need help! Negligent clonazepam taper/care?

[[ki...]]

Hi everyone!

Hoppng someone has some insight .

sorry it’s a bit long to read , I’ve tried to simplify it as much as poss

I was prescribed one 0.5mg of clonazepam a night . This was for nightmares due to PTSD.

 

I was not given informed consent about physical dependence. I was only aware of addiction.

 

I had some cravings early on to take more , about a month and a half into daily taking it , so I requested to come off it.

 

The sleep consultant /service that prescribed the clonazepam told me to take 0.5mg on alternate days. I reacted extremely badly to this , so they just put me back up to full dose. I wasn’t followed up with and just left on it for the past 3.5 months.

 

I started to notice negative defects sensitivity (instead of feeling awake I’m the morning and well rested as I did when I first started taking it , I now feel druggy and extreme fatigue for hours after waking)

 

I started getting curious and that’s when I found out about proper tapering . That the dose should be reduced gradually 10 percent for weeks and so on.

 

I know my dose is low but I’m trying to find out if this is normal and accepted way to come off of 0.5mg . To take it just alternate days for weeks. For the effects I’ve had and what I’ve read it seemed negligent. Especially as instead of trying something different they just put me back on full dose and left me , even tho I had really bad recurrences of PTSD symptoms , everything  ramped up . Headaches , Nausea . Since then I’ve been getting numbness sensations in my head and arms as well.

 

I tried to make a complaint and raised all my concerns and asked for a consultation . Instead they just wrote a letter giving me this tapering 

alternate 0.5mg to 0.25mg for two weeks . If this is tolerated then continue on 0.25mg daily. With a follow up appointment booked in a month.

 

please please can someone help and advise it all just seems wrong . And especially just saying try this and they will check in after a month !

Thank you so much for any insight 🙏

 

 

 

 

 

 

 

[[Pa...]]

Hello @[ki...], welcome to BenzoBuddies,

You’ve done an amazing job of educating yourself, and you’re correct, a gradual reduction in dose seems to work the best, as well as paying attention to your symptoms to guide you.

Taking it every other day creates a whip lash of symptoms because your blood serum levels are disrupted, slow and steady reductions are best.

Did these other symptoms show up when you attempted that taper or are they new?  Just wondering if you’ve grown tolerant to your current dose.  And by the way, no dose is low when it comes to benzodiazepines, they’re powerful at any dose.  

If you have a steady supply, we can help you figure out a taper plan, its a challenging process but we can recover. 

I probably haven’t addressed all of your concerns so lets keep talking.

Pamster

[[ki...]]

Hello

im so grateful for your compassionate and considered reply thank you for the insight and help.

 

the whiplash effect caused major issues. I also tried to reduce to 0.25 daily for around a week and a half. After a week I felt horrible and it was scary. More numbness which physically felt it was in my brain, extreme fatigue , mood swings, tearful, zero energy . No appetite. Extreme rage during sleep(waking up punching.

 

I think I am definitely becoming tolerant to the dose . I’ve now been on it 5.5 months . I’m not getting the benefit from it . I feel sensitive to it .
 

The only thing it does is get me to sleep so no insomnia. But I now wake up feeling druggy instead of alert. I’m getting headaches . I feel like I could sleep forever in the morning. When I first started taking I was waking up at 9am, fairly well rested for the first time in years. My moods now seem to be lower, Its caused sexual dysfunction too. 

 

“no dose is low when it comes to benzodiazepines, they’re powerful at any dose”

 

^This is what I’ve not realised . Whe I brought up addiction to my consultant and other concerns , I was just told it was low dose, and because It had positively affected my ability to sleep so much she saw no problem of me staying on it longterm

 

 

i have a steady supply , and hopefully switching to a new consultant who will be open to further assisting me into a very slow taper with advice from this wonderful community .I struggle a bit with digesting lots of information because I have adhd, I also suck at maths lol

 

so far I understand you can dry cut , dissolve in lager amounts of water for a very slow taper with syringes or get the liquid clonazepam and slow taper with that by also diluting it

 

I haven’t really fathomed what kind of a time frame this will take . I guess it depends on the method ? But I don’t work , and have a lot of time . So my only concern is doing it safely and slowly so to remain as stable as possible . I have amazing weekly therapy talk therapy so I am supported in this way

Thank  you Pamster 🙏

 

 

13 hours ago, [[P...] said:

 

[[Pa...]]

It does sound like you’ve become tolerant, its weird about the fatigue, I know some members have this symptom, my friend did too but for me, I was so wired it’s difficult for me to imagine feeling that way. 

If you’re going to be seeing a new consultant, you might want to ask them if they’re familiar with this document, its geared towards practitioners and stresses listening to patients.  https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

Yes, you have options you can employ when tapering, dry cut is the easiest and if you have a doctor willing to prescribe the smallest tablet, it can work very well.  Clonazepam now comes in .125 orally disintegrating tablets which can be cut, but yes, there is also dry and liquid titration.  I don’t believe Clonazepam comes in a liquid form in the US but compounding pharmacies can make it. 

[[ki...]]

Thanks for the reply and document super helpful and to know it comes in 0.125

 

im thinking I’m going to have to

start tapering myself and inform my GP as second opinion from my sleep clinic who pre robed is likely to take months and I don’t want to be stuck on it I’ve noticed my memory is definitly  worse so that worrying 

 

 

im not sure where to find details /schedules on how to taper slowly from 0.5  with the different methods of you can point me in the right direction at all

 

 

thank you so much