How to taper when so sick from the drug??

[[An...]]

Hi Everyone, I know there's just no good answer to this question, but I'm just so, so troubled by this. 

My initial symptoms of trouble with the benzo were chalked up to lyme disease and mold illness (I was prescribed the benzo to help with insomnia from these suspected conditions), so the benzo injury went undiagnosed for over a year, when I was already bedridden. It took lots of convincing and showing doctors the timeline of my decline to get one doctor to understand and help by prescribing through a compounding pharmacy. She believes I am benzo injured.

I am soooo debilitated and have been almost completely bedbound for 22 months. Each reduction, although tiny, is very difficult. 

I have no less than 60 symptoms. I feel like I just need to get back on my feet, but can't figure out how to do that with these severe symptoms. 

I know CT or rapid taper isn't the answer, but is there anyway to feel better while slow tapering, or is this just the way things are for now?

Like most people in this situation, this has been a huge challenge for my family who have become my caregivers. My husband is trying to run a busy household with 5 kids and pay attention to my needs when he finds a minute.

I guess I am having a hard time seeing my way out of this and feel pretty trapped. 

I soooo wish we had known the drug was hurting me two and a half years ago when this all started. I feel like major damage has been done. There is such a long way to go. At 0.704 from original dose of 0.75mg. 

Sorry for the long post. Feeling overwhelmed and unsure of what to do. Anna

 

[[de...]]

Anna, I can tell you are trying to figure all this out and are wanting to have some sort of normalcy.    This can be a very difficult journey.   

First, it is great that your doctor understands benzo injury, and it sounds like she is supportive of doing a very slow taper.

I am sure it feels overwhelming when you look down the road at a long taper.   Unfortunately, there is no way around the symptoms that come with the tapering process.   Each time you taper your body has to get used to the changes.    

If I am understanding what you said, you have been bed bound for 22 months because of benzos, but the doctors initially thought it was Lyme disease.  Is that correct?     Can you tell me a little more your history with benzos?  

In order for members to fully understand your story, would it be possible to provide your benzo history under the "About Me" section in your profile?   Of course, if you do not feel up to it, that is fine, but it is so helpful to know all the details of your usage and your taper.   

[[An...]]

Hi Decatur, thank you so much for your response. I do seem to have a case of chronic Lyme (have tested positive through igenix) that is hard to treat because of my sensitivity to meds since being prescribed a benzo back in 2021. 

I really think 90% of my symptoms are related to clonazepam. I have symptoms that are in line with benzo injury moreso than Lyme, and the timeline of decline fits with benzo usage. 

Yes, I will fill out the about me section. 

Thank you for your kind response. 

[[An...]]

Ok. Just update medication history. I hope that helps. 

[[Fa...]]

Hi Anna,

I feel for you…I am I the same space.  I wish there were an easier way, I truly do.

Sending you Much Love and Healing.

Warmly,

F

[[An...]]

Thank you, Faith. I'm so sorry you are in this same situation. It feels like a trap. I just wish there were some way to get a bit on top of the worst of the symptoms so that tapering could be easier and perhaps quicker. 💜

 

[[Fa...]]

It does feel like a trap.  And, for all the searching for resolutions in this that I have done, I keep coming back to where I am.  A slow hyperbolic taper.  I know I cannot withstand a rapid taper.  What I am doing now is my max.  I certainly cannot withstand a CT.  I know myself.  And, I’ve had a taste of it already…how my body reacts.  And, moving through this with AKA makes it very delicate, too.  Any who have additional complications makes it more delicate of a process.

I have been moving through this for it will be two years next month.  Different than your circumstances, but two years of life standing still…and, suffering.  No ‘magic bullet’ as they say.

What are the worst of your symptoms, Anna ?

 

 

[[An...]]

I feel the same, Faith. Could not withstand a rapid taper. Can you remind me where you are at in your taper? I can't seem to figure out how to view a member's med history. Do you know how to do that?

Worst symptoms are severe weakness and shakiness, horrible symptoms after eating, a gravity pulling me down feeling in my whole body. Even my internal organs feel super heavy and pulled down. This makes it hard to move around. Also, super sensitive to stimulation and short and unrefreshing sleep. Brain fog is bad as well.

How about you?

Praying for relief for us all.💜💜

 

 

 

 

[[Fa...]]

Not all have added their med history yet.  If you would like to see how to view, you can click on my profile, click on the 'History' tab, and my med history is there.  Some may have theirs in the 'About Me' tab.

My worst symptom is AKA.  The mental AKA is what is the most tormenting.  I have a lot of symptoms, and more keep cropping up as I taper, but if I could wave a magic wand and get rid of the AKA 'package' of symptoms, that would be my wish.

We are at a similar dose.  I am now at .792mg of Clonazepam.  I started at 1.5mg.

I am dealing with food issues, too.  I have SIBO, and I understand having reactions after eating.  Went through the process of trying to determine what was going on.

We have both dropped a lot weight, too.  I am working hard at trying to put some back on.  As you know, it isn't easy.  Most of mine was lost due to pacing for hours.  Seems as though all I do is eat.  My new job...making sure I put food in me.  Feels like a job, you know?  And, when our bodies don't accept the food well, it's terrible.

In the meantime, tapering is far more difficult for some than others.  I am at the point where I have to keep moving...I, too, am too sick.  So, I have picked-up the pace a bit.  It's still very conservative...and, I was very afraid to do it.  Still am every day.  There is no choice, though.  We have no choice but to move through this, and there is suffering.  Hardest thing we'll ever have to do...in my opinion.

Always praying for healing for us all.  Every night.  There are just too many of us...breaks my heart.

 

 

 

[[An...]]

I'm sorry for the immense suffering, Faith. I know aka is such a horrible symptom. Does it ever completely disappear for awhile? I'm glad you are eating and hopefully putting some weight back on. Have you been able to gain some weight? I am up about 13 pounds from my lowest, thank God. Still about 14 pounds underweight. But not like before.🙏

I am also thinking of speeding up my taper now, otherwise it will be years. Do you do a cut and hold method?

My pharmacist is encouraging me to switch to liquid for a daily taper, but I am worried about switching to a new form. 

Right now it's in a powdered capsule and I reduce by 0.5% at a time. Totally symptom based, so no set time.

I hope you are managing ok. So grateful for your encouragement. 💜

 

[[Fa...]]

No, the AKA never completely leaves, unfortunately.  I have put almost 7lbs back on after losing 40lbs.  I had gained some weight just before all this happened...so, I do not need to gain all that weight back.  Another 15lbs would be suffice.  That would be my comfort zone.  I'm so glad to hear you have been able to put on 13lbs...if you are anything like me, it's not easy to do.  I was very scared when I saw how skinny I had become.  Skin hanging off my body...I'd not been that weight...well, can't remember the last time I had been that weight.  

Yes, I do a cut and hold.  But, I do it in a less-conventional way.  I was doing a DLMT.  I didn't want to change the delivery system...I was too afraid with my symptoms being so severe.  So, I understand you're being concerned about changing.  Instead of using the liquid taper for daily micro-tapering, I just draw out the full amount and that is my 'cut'.  I'm not saying this is the best way...I could go back to micro-tapering...but, I would build in much better holds if I were to do that.  I just feel like I am more in control over things this way...I can follow what my body is doing.  But, it's difficult.  I have been experimenting with what my maximum cut is...so, I've been changing it up.  This last one may test me...I have a feeling.  So, I may do a little less next time, or hold longer.  This has been a big deal for me...I was really afraid, but more afraid of not doing it.  I am open to changing approaches if need be.

I can't do a symptom-based in the sense that I'm always highly symptomatic...so, I go by time for the most part.  However, I will be able to sense, and have been sensing, new things happening.  So, I kind of try to gauge by certain symptoms that crop up after a cut and seem to ease back off again within all my other stuff.  But, it's been tough to really navigate it.  I really don't have the answers...I go by the seat of my pants and a prayer each time.  I wish I could be in a more controlled situation as many can be, but that's just not my 'path' on this.

If you should decide to speed up your taper, I truly hope it goes very smoothly for you.  And, from what I have read over the months...if you should decide to change the delivery system, giving yourself a good couple of weeks to adjust before making a reduction is necessary.  You probably already know that.  Have you read others experience with changing over to a liquid from your current powdered capsule?