Benzo Belly

[[mi...]]

Many of you have seen my posts about Teva and Liquid failures on K over the last two months. For the last 2-3 weeks I've dealt with some significant benzo belly, hyperinervated gut with insane anxiety, hard distended belly, sensitivity to most foods, etc. Prior to this past period of generic/brand/liquid changes, I had virtually zero GI issues during my simple and slow taper. I'm at .169mg of K at the moment. I've been back on Accord for 4 days now and the severe cramping has already lessened, but my belly is still bloated and Im afraid to eat most foods. Since I haven't experienced this symptom prior to all these crazy changes that have now reverted back to the original good generic, is it safe to assume this will settle in time and not be a prolonged issue as long as I continue to taper slowly and safely, or is it possible I've awakened the beast and this is now part of my taper. I really hope this goes back to my previous baseline. I thought I had read somewhere that benzo belly was typically from WD or fast tapering. I know it can happen to anyone, just haven't had the problem myself. Interested in others' opinions.

[[Pa...]]

I hope you can go back to baseline but we just don't know if you will, wouldn't a crystal ball be nice about now?  I don't know if benzo belly follows a particular pattern, I didn't suffer with it and I quit cold turkey but it seems like this process attacks us at our weak points.  Have you suffered with gastro issues in the past, before you started to taper? 

The fact that some of your symptoms have lessened is a good sign, please don't fear food, I've seen members restrict their diets to the point of ill effects, keeping your body healthy while going through this demanding process is important. 

[[mi...]]

Yes I have suffered for years with horrible stomach cramps and Ibs like symptoms. But Klonopin seemed to take it all away. But I had no issues with it at all as I and down until I tried liquid. Next day it was like someone fired up every nerve in my GI tract. So frustrating. 

[[Bo...]]

Ya I’ve gotten pretty severe lays week and now same time frame this week. 
 

My compound powder is from PcCA anyone else? It was Fagron before and then they went on bsckorder. 
 

I m having severe time but can’t switch bc at .018mg. So fear a switch 

[[mi...]]

When did your compound powder switch to PCCA? Mine was PCCA I believe and it caused a massive GI reaction in my nerves that has yet to settle down. I had zero GI symptoms even on the horrible Teva switch, and one day after starting PCCA pure powder in Ora Plus i had the most insane reaction ever, nerves burning, tingling, cramping all over gut, like it is alive with a wild animal running around inside. Strange thing is bowel movements are virtually normal, but feel the most intense pressure and gas sensations. It's like normal gut functions feel like they are intense pain. Super super painful and nervy. Afraid to eat, afraid of the pain, when it flares up i sweat like crazy and start to panic. It's like a mind/gut direct link that is instant. I'm back on Accord for 5 days now and am feeling some relief in some areas, but the gut is still trying to sort itself out. I feel like the liquid was a massive hit/injury on my gut. This isn't a whole I need a probiotic thing, I've been down that road, I was eating brisket, nachos, etc, whatever I wanted for months, no issues, one day on liquid and I can't drink water without problems. Lots 10 lbs since then. Trying to stabilze weight loss.

[[Bo...]]

End of March I think but the LOT changed for June when crap started to hit fan for me. Who knows.

Are you doing better back on accord pills? I hope so. 

[[Bo...]]

Yea that is what I have had the last few weeks. I was eating pretty good after a rough last year and then been going downhill last few weeks but ER bad last week bc couldn’t sip water without dry heaving. 
been having the violent shaking too that goes on for hours which hurts everything.

sounds like we are having very similar deals and I’m so sorry you’re experiencing this. I’m glad you see a good change back on accord. Long May it continue.

[[mi...]]

I wonder if we both got a bad batch, I got mine in July, but could be same batch??? That can't be a conincidence!

[[Bo...]]

That’s what I think,,,, if you find out your LOT number by chance I’ll have my mom check with my pharmacist bc she’s been on with them for 20min about all this. 
seems like something is up bc the guy that also uses my same compounder has been struggling mightily as well since May.

@[fe...] how’s your husband? Do you know the LOT number for the K batch when he started having issues?

[[mi...]]

I don't know the lot number actually. The crazy thing is I felt "hit" in my gut in 24 hrs from only a 25% liquid 75% pill dose, so it wasn't like it had time to build up. After 3 days I went to 100% liquid and stayed there for 4 days, so 7 days on liquid, went into acute with horrible sweating and shaking, losing my mind, pain kept getting worse. Now off it all for 12 days and some things are better but stomach is not and I feel toxic as hell. Not sure if it was the batch or just my body went crazy on liquid and hated it. I definitely felt it hit very quickly and pronounced. And the first time i took 25% liquid as well as the first time I did 100% of my dose liquid I felt a strange high within 30 min that I never get with pills. It took away anxiety and stomach pain for a few hours but i felt uncomfortable and not rested. Then the following days I plummetted. It basically thew me into fight or flight, immediately knocked out my libido, which has worked my entire taper, caused me to lose 1-2 lbs a day for a week, totalling 10 lbs, and BP 140/100, Pulse 140. All from liquid. Like how does that even happen with a benzo.

[[Bo...]]

What’s your pharmacy? Isn’t Pharmacy Solutions is it?

[[mi...]]

No, local one where I live. I don't want to give personal details but it's a small one in a local community, but they are PCCA certified. I switched to a different mom and pop once I found a supply of Accord there, same town different pharmacy.

[[Bo...]]

No prob, just strange how many of us started having issues around same time and same kind of issues. 

[[mi...]]

Some people just don't do well on liquid, whether immediately, or after some time from stuff I've read. I heard of one lady who did liquid for 6 months and had to go back on pills to finish her taper. No idea why. I have heard from so many that staying on the same form/brand the entire time is extremely helpful. I switched to liquid because Teva wasn't working, but also because I am at .169mg K and wanted to keep my cuts at a fixed % which I couldn't do with a miligram scale. I've decided I'm going to do pills the whole way down after my liquid scare. I'm going to invest in an expensive $1500 scale which honestly will still be cheaper than years of compounding liquid, and I'm going to take it down as low as I can go with that. Hoping it can be Accord the whole way. But liquid def works for the right person and until now has for you it seems.

[[Bo...]]

I switched from dry microtaper at .16g bc my akathisia was so bad I had to try something. And I had bought sn expensive scale as well. Gotta do what you gotta do.
So liquid compound evened me out after a few months, but I don’t use the Ora Plus. He uses s suspension vehicle from Letco since I am so sensitive. I started doing a lot better below .12mg and then this hit the fan. 
yes the dry taper can work for many, so stick with what you know if it’s working.

[[mi...]]

How big and how frequent were your cuts at .16mg when your akathisia was getting bad.

[[Bo...]]

I was doing 10% over a month by that point but had been up to 12-15%.
I went to 5% a month changing to liquid for first 3 months, Then ditched percents and did .01mg over a month.

[[mi...]]

I did .002mg of pill weight reduction every 14 days which was anywhere from 5-6.3% per month. I started feeling it a little as I got closer to 6.3% as far as sensory stuff but otherwise fine. I think that 5%/No is my sweet spot. So 2.5% every two weeks. I’m so so sensitive to changes that doing 10% or higher per month would send me right over the edge. I think this is why I was able to remain stable going down. Problem is to get lower than 6.3% I have had to switch to .001mg on my scale which is now 1.7% every two weeks or 3.4%/mo which is too slow. Obviously I’m not cutting much at all until I stabilize anyway, but when I start up again if I get a scale that goes to .0001 I can as another tenth to even things out and dial it down. Have you considered your % being too high as a problem and not the liquid. Your last few cuts have been massive. Just curious.

[[Bo...]]

I’ve been tapering for 3 1/2yrs so I just didn’t know how to keep dragging out the end. I was somewhat functional in June and early July and then boom.

I don’t know what the right thing to do is. Prolong by staying on or then others say get off so can heal. This is my huge dilemma right now bc I am barely hanging on and no idea if this can get worse by still tapering. I’m very lost snd after this long is really my worst nightmare.

[[mi...]]

I mean jumping would end the taper but make acute worse. I’ve heard and read over the years that the more stable you are when you jump the better prepared your body is for acute. You are crashing into acute and are destabilized. Some people have to walk all the way down to zero. What’s a brief hold and another 6 months to slow this way down to 5-10% per month and get it down as low as possible and then jump from stable. Cutting from an unstable point is never going to feel good. Surely a hold and slower drop has to beat what you are feeling right now?

[[An...]]

Following this thread. So sorry for what you are both going through. I also use a compound and was seeing steady improvement April, May, June. Then got slammed hard very early July. And have not picked up at all yet. This past week has been horrible. Loads of GI and bad anxiety. Back to bedridden after up and cleaning a bit each day. Could it really be something to do with the powder? How would we figure this out? 

[[Bo...]]

Hi Anna, hate you’re struggling so much too. @[An...]

you can ask your pharmacist if they get their powder from PCCA or if not then who? Fagron was used for mine for almost a year and then got back ordered so they switched to PCCA.

your pharmacist will be able to tell you if they changed LOTs or manufacturers around the time you started feeling worse.

sending so many hugs. 💜

 

[[An...]]

Ok. I'll give a call. Thank you. We will get through. Many hugs and prayers. 💜🙏

[[mi...]]

I've been off the liquid for 12 days and my stomach is still angry. It's constant gas cramps, nervy feelings, hypersensitive to every single thing I put in it. Gives me insane anxiety when I feel the nerves inside it go crazy. I figured being off the liquid would have helped by now but nope. Maybe it was just too many changes in to short a period and the liquid was just the final straw. Who knows. @[Bo...] your cuts have been 20-33% or so, so that could be a legit variable and not the poweder source. @[An...] if you don't mind me asking, what rate are you cutting on liquid and how long have you been at that rate?

[[An...]]

So sorry you're having all the GI stuff. It's just terrible, I understand. Really hoping this starts to improve for you. I'm using the compounded powder in capsules. This will sound totally ridiculous, but I'm only decreasing .5% every two weeks right now. Works out to .003mg every two weeks. I'm going to have to step it up eventually, but it's what I can manage right now.