Benzos Benzo kindling and diarrhea

[thisismylife]

I just got out of an inpatient rehab on Friday after almost four weeks of hell, and now I know what was going on after reading the other thread about kindling. I really went to this facility for anxiety, but their policy is no benzos while there because it will dull your emotions, getting in the way of the therapeutic work, so they immediately switched me from Xanax to Librium the first day I was there. The prior two weeks to admitting, I kept track of every Xanax I took, because it varied every day. My average was 1.25 mg/day, with .5 of that coming at bedtime. The medical provider (supposedly an addictions doctor; I had passive suicidal ideation and was followed by a behavioral tech around the clock for at least the first week) at the facility told me they were actually starting me with a higher equivalent of Librium, but then did a taper every 3-4 days, so I was off of all benzos within 2.5 weeks. Yea, now I know... too fast. During this time, I was barely able to participate in any of the program, either. Cognitive functioning sucked and I developed diarrhea a week into the taper. One night it was so bad, I had to go to an ER to get rehydrated; all my electrolytes were off, too, so they had to supplement with potassium, but then they sent me back to the rehab facility (which technically is considered a hospital but they aren't equipped to deal with dehydration other than give me Gatorade). After almost three weeks of trying to participate in the program and spending 90% of every day absolutely miserable (nerves throughout my body felt electrified, I felt like I was walking during an earthquake, etc.), and they weren't too anxious to get at the root of the diarrhea, I called my H to come pick me up. He gave me a .5mg. Xanax immediately on Friday afternoon, then I took another .5 mg pill Saturday afternoon. Interestingly, yesterday morning I had my first solid stool in three weeks and my anxiety was very, very tolerable, so I didn't take any Xanax. I woke up this morning, immediately having to go to the bathroom and the loose stools are back, three of them already this morning, and back to the feeling my nerves are electrified like they felt when I discharged on Friday. I took .5mg of Xanax and am waiting for it to kick in. I have put a call into my GI doc and she will be able to see me this week. All the stool cultures and blood work I had done came back negative. But the diarrhea was so bad that, the night I came back from the ER, and the following night, I soiled myself in my sleep. And because I had no abdominal cramping, I had little notice of when I'd have to go to the bathroom, and I had several mild instances of bowel incontinence during the day. I was horrified. All they did was provide me with some Depends.

This is the humility part. I never knew what kindling was until I read about it here late last night. Three times in my life I was on Xanax for extended periods of time, meaning six months or more, but taking it mostly PRN. The first time, back over 20 years ago, when the crisis that instigated the Xanax use went away, on my own, I just started feeling better, and within a few weeks, was free of Xanax, with no withdrawal symptoms. I know in hindsight that was probably very odd compared to most people's detox. Then back in 2012, I went to another inpatient rehab facility and they weaned me off of Xanax, but it was a bit less difficult; I definitely had symptoms, but nothing like this time around, and I don't remember any diarrhea. Less than a year later, though, I was back on Xanax, again, never taking more than 1.5 mg. per day of the extended release. I ended up going inpatient on a psych ward at a teaching hospital because I was also having passive suicidal ideation. I had 12 sessions of ECT, the depression lifted, and within a few weeks, just like the first time I was on Xanax long-term, I just slowly came off it when, each day, I'd wake up and realize it was an hour or so later that my anxiety was ramping up than the day before, so I cut back over a few weeks and had no physical issues coming off it. It was incredibly easy and intuitive. However, while in the hospital, they attempted to ramp up my Zoloft use really quickly to help address the depression, and evidently doing so can cause microscopic colitis (they did a colonoscopy to confirm). As soon as they backed off the Zoloft, the loose stools went away.

I suspect this time was worse because they were NOT giving me the Librium equivalent of Xanax, despite telling me they were giving more. H and I googled it on Saturday, and the Librium equivalent to an average of 1.25mg Xanax was 60 mg. and they started me at either 30mg or 45mg (am waiting to get my medical records), then tapered every 3-4 days. The first week was an absolute blur and horror; I remember very little. The second week I'd have an occasional few hours in the day that was tolerable, but most of the time I'd have to spend it in my room with my eyeshades on, and and iPod, listening to nature sounds. I could never sleep during the day, although I was physically depleted beyond exhaustion. And of course, I could never really get anything out of the program that I went there for... PTSD. They did try to mitigate some of my symptoms with Trazadone to sleep and Inderal (a beta blocker)... 10 mg. twice a day. But when I talked to my internist, he said 20 mgs. a day of Inderal is nothing. He said when they start someone on it to control high blood pressure, the starting does is around 80 mg./day. And yes, days I was there, my BP was really, really high.

I was so disheartened to wake up today to more loose stools and massive anxiety. The inpatient facility wanted to start me on Entocort, but it wasn't delivered until Friday when I left, so I brought it home with me. I called my internist on Saturday to tell him everything that had happened. He was furious that this facility did not consult him or my psychiatrist at home about me or my Xanax use, and he said he'd never put anyone on Entocort without some sort of imaging that showed evidence of some sort of colitis. He thinks it was unethical for them to complete the Librium taper in 2.5 weeks, that it was too fast. My H, who has worked as a scientist in major pharma until retiring a month ago, did some more googling and discovered the Ashton manual. This did NOTHING like that... it was way too fast, and now I'm afraid I'm being punished for it. I emailed with my psychiatrist on Saturday and she told me to take whatever Xanax I needed (she knows I will never take any more than is needed to relieve my anxiety) until I see her this week.

The other outstanding complication is that we are in the process of relocating from the midwest to the LA area. H was already in LA when I asked him to pick me up. But we are going back to the midwest tomorrow so I can see all my providers; then we will drive my car back here; right now, the only car we have is H's and he needs it to get to work. I don't have a psychiatrist here yet, but we are working on that. One of H's co-workers has a connection with someone high up in the psychiatry department at the UCLA medical center and is willing to make a referral for us.

So for those who have tapered, did you have GI issues like this?

 

[Prescottdave]

A 2.5 week long taper is extremely good for an inpatient treatment facility. 5-12 days is the norm. I have a friend who has a permanent sezuire disorder from being weaned off of 4 mg alprazolam per day in 3 days at Four Winds a local IP facility. Dealing with a real BNZ dependency and subsequent tapering should not take place in any rehabs period.

First thing you should do is stop messing around with alprazolam. Get your doc to prescribe an equivalent amount of Librium or diazepam then try and taper at home. This would be much closer to anything you would read in the Ashton Manuel. Getting off of benzo's is going to be hard. Prepare to not be functional during the end of your taper and for about a month afterward. You had it pretty good with a basic taper. I have never had serious GI problems from stopping benzo's but it is a common physical WD reaction listed on Wikipedia or in studies conducted by the NIH. GI problems to the point of dehydration is a sighn that you are being weaned to quickly especially if it only occurs during times that the medication is at low levels in your system.

Most places detox you quick and the good places do not take in people on benzo's in the first place. Maybe some Imodium and gabapentin would help with the physical aspect. Being on a short acting BNZ is counter productive towards your end goal. Per the Ashton Manuel diazepam is most commonly used though I find Librium actually has a longer mode of action. Last time I stopped after being on high doses of clonazolam for a year ranging from 1-2 mg per day I did a ten day Librium taper and stopped for 9 months. It was a hard nine months but not impossible.

 

[thisismylife]

Maybe some Imodium and gabapentin would help with the physical aspect.

I was taking Imodium. The day I ended up in the ER dehydrated I had taken the max dosage of two after first loose stool, and one after every subsequent loose stool, so I had taken 7 Imodium throughout the day, and was still going to the bathroom every 15-20 minutes. There's another diarrhea prescription called Lamodel, but they were reluctant to prescribe it to me because it has some narcotic in it.

I also failed to mention above that many times throughout the day I would sense myself starting to disassociate; it was so incredibly frightening; I couldn't stand to be in the dining hall with 60+ other patients and staff because the noise was too much. I had no appetite, but would force myself to eat something at every meal. I don't know how someone does this safely at home. I remember very little of the almost four weeks I was there. We are supposed to fly back home tomorrow, I'll see my psychiatrist on Thursday, along with my therapist Thursday and Saturday, and hopefully my H's and my marriage counselor at least once. Then we have a three-day drive back to the west coast, hopefully leaving Sunday I really can't be experiencing the kind of symptoms I have been again this morning. If I get back to anywhere I was at my worst while in this rehab, I can easily see I'd start having passive (if not active) suicidal ideation. I had absolutely nothing to live for. I was out in the middle of nowhere, and their medical providers were just so casual about what I was going through. The one time I was inpatient on a psych ward and had diarrhea despite taking max doses of Imodium, they had me consulting with a GI doc within a week and a colonoscopy scheduled within a few days. This diarrhea went on for 2.5 weeks before they even considered calling a GI doc for me. I wasn't even going to get in to see him until tomorrow.

I hear your suggestion of getting on a different benzo, but if there are any detox symptoms, I can't do this on the road during a 2000 mile drive. Of my anxieties, health anxieties are at the top of my list, for various good reasons; I have a lot of chronic health problems.

BTW... are you saying a benzo taper should only take place in a hospital setting? Also, I've only been off the Librium eleven days, and yes, I know it was a setback to return to the Xanax, but they wouldn't discharge me with Librium, and Xanax was all I had.

 

[thisismylife]

So I just had a phone call with my psychiatrist, and she is telling me if I have no options about having to come back to IL for a few days so we can drive my car back to the west coast, then I will need to take whatever amount of Xanax I need to keep the anxiety as tolerable as possible.

One other thing I forgot to add, and I'm sure others have addressed this on other forums, but when I was inpatient, I did do the GeneSigh Psychotropic cheek swab. Something that was interesting was that with Xanax, I have a moderate gene-drug interaction, which means serum level may be too high, so lower doses may be required. Both librium and valium also come back with that designation, but it also says use of those drugs may increase risk of side effects (so it falls in the 'red category, where the two other categories are green - safe, and yellow - use with caution). Could explain why I had such a difficult time with a Librium taper. The only anxiolytic that comes back as 'use as directed' for me was Restoril. Even Inderal came back as serum level may be too low, so higher doses may be required.

As an aside, one of the 'real' psychiatrists I saw at the inpatient facility (my assigned psych there was a psychiatric nurse practitioner) on my first day said that Inderal is such a great drug at reducing anxiety that in many countries it is seen as a banned substance in professional athletes. But the amount they were giving me was incredibly low, so I doubt it had any effect on reducing anxiety symptoms.

 

[Prescottdave]

Tapering in an outpatient setting is generally the norm for people following any protocols designed in the Ashton Manual. I don't know of a single in patient treatment center that is willing to do a 3-6 month long taper. Tapering using a short acting benzo is much harder in general. This is your taper but if you want to follow the common protocol to detox people off alcohol and benzos a long acting BNZ is what should be used due to the dangers of having a seizure. Tapering off Xanax is hell. Tapering off a benzo with a long half life is much easier thus why diazepam is used in the manuel you want to be basing your taper off of.

The first thing you can try and do is let go of your xanax for a BNZ that is going to lower your likelihood of having a seizure and still be in your system 3-7 days after dosing. You might even find that your GI problems may be less at an equivalent dose. Most meds they throw at you will do little to reduce the physical symptoms. I found gabapentin and valerian root worked much better than all the SSRI's and beta blockers they tried to get me to take. So you have hopped online asked some questions and got a response.

Really all this should be taken up with your PCP or mian doctor. I can tell you there is a reason they used librium though they obviously failed to look at a dosage equivalency chart as you should have been started on 25 mg 3-4 times per day. This is the first reason why something like this should not be attempted at a facility in which they can't even get an equivalent dosage correct to literally protect you from possibly dying. People get off benzos all the time in outpatient settings under the care of doctors who specialize in this type of thing. Most people do not have the money for some type of long term care in an in patient setting.

 

[thisismylife]

What I find so interesting about all (now four) of my benzo tapers. The two that I allowed to happen in my own time, when the impending crisis was over, went as smooth as silk. The two I had the hardest time with were the two initiated by inpatient rehab facilities. I seriously had not one symptom when I tapered myself, listening to my own body.

I'm not saying I'm not willing to give another benzo a try, but I don't think it should happen in the middle of a stressful trip. I have been making phone calls today to find a new psychiatrist for when we get back to the west coast. And hopefully my GI doc can squeeze me in this week because I really would like to know what's going on with that.

 

[Prescottdave]

What I find so interesting about all (now four) of my benzo tapers. The two that I allowed to happen in my own time, when the impending crisis was over, went as smooth as silk. The two I had the hardest time with were the two initiated by inpatient rehab facilities. I seriously had not one symptom when I tapered myself, listening to my own body.

I'm not saying I'm not willing to give another benzo a try, but I don't think it should happen in the middle of a stressful trip. I have been making phone calls today to find a new psychiatrist for when we get back to the west coast. And hopefully my GI doc can squeeze me in this week because I really would like to know what's going on with that.

Right on. Sounds like a plan. I think it only makes sense to be able to attend to your own physical needs while initiating a benzo taper. Being under the care and control of an inpatient facility can be dangerous, costly and hectic. Honestly it helped me to have a loved one dispense the last few weeks of meds as I has problems with self control. The thing is I rather slip up at home then risk a seizure from being quickly detoxed in some weird setting disconnected from your community, medical providers and loved ones.

Benzo dependency is some serious shit that takes time to deal with. The rehab system is not about taking you down slowly. Most of the rehabs around my area as per a few years ago do not even allow you to enter if you have benzos in your system. They even deal with alcoholics but refuse to admit benzo addicts. This is probably because people got sick of dying or contracting health problems from quick tapers. The main mental health provider in my area has started switching most clients to diazepam from Alprazolam because of some of the reasons discussed above. Rehab is not out of the question but you would want to taper for a number of months before entering. It really is not my place to tell you what meds to switch to but I can tell you what is the common protocol used in hospital settings. Xanax tapers are not one of them.

 

[thisismylife]

Rehab is not out of the question but you would want to taper for a number of months before entering.

Honestly, I've done so much therapy in my life, I wasn't really learning anything new about myself or my co-dependency that I didn't already know. Of the lectures, groups, and 12-step meetings I attended, I never really heard anything I hadn't heard before. At some point I'd like to try some EMDR and Somatic Experiencing, but within the last 6-7 weeks, I had a bout of vertigo that leaves me skeptical about doing EMDR right now; my eyes still tire easily, so I could see EMDR aggravating that for right now. The stuff I want to do, I can do outpatient, but I need to be in a place of physical comfort to engage and participate, which was my biggest gripe about where I was at. I was paying an ungodly amount of money a day to have access to all their programming, and I could never get to anything more than 50-60% of what I was supposed to get to.

Then they tried to discharge me AMA; we raised a huge ruckus with the clinical director, who finally admitted, after we told him to look at my medical record online, that he had been led to believe I'd had more contact with medical providers than I had. So he changed the status of AMA. It was a miserable final conversation to have with someone at that place. I think he only listened to us because my H was there at that point, and was cognitively able to better point out the discrepancy. It was such a nightmare.

 

[thisismylife]

So another question... if I'm going to take Xanax for at least the next week, until we get back here (flying out this morning), would it make more sense to take the extended release form? Then I wouldn't be taking it so often and wouldn't have the same amount of highs and lows. My psychiatrist sort of recommended I do that (take an ER form), but I didn't think about why until this morning.

 

[thisismylife]

Bumping this up with another question...

Thoughts on tapering while in an IOP or PHP? I just got off of the phone with an intake counselor at a highly recommended IOP/PHP and told her what happened at my previous stay. She said this new program (which is supposedly the only outpatient center in the country to deal with trauma and offers many of the modalities my previous inpatient program did) is structured to help people taper from benzos in whatever time frame their bodies can handle it, i.e., if I develop diarrhea or become so cognitively impaired, they realize they're tapering too quickly. My biggest gripe with the other program was I was not able to get anything out of the program because they tapered me so quickly, and in fact despite telling me they switched to a higher equivalency of another benzo, using some online calculations, they weren't giving me a full equivalency, much less more. Online calculators we used (3 of them) showed if I was on average taking 1.25 mg. of Xanax a day (.5mg at bedtime included), my Librium starting point should have been 62.5mg. They started me at either 45mg. or 30 mg. All I remember is it was the same pill three times a day. I can handle a little anxiety as I taper; I can't handle not being able to function and in fact, be so physically spent from little nutrition. Also, this program says from day one they consult with your primary psychiatrist and therapist. At my previous program, they never called my psychiatrist and didn't reach out to my therapist until the end of the third week.

 

[Prescottdave]

Bumping this up with another question...

Thoughts on tapering while in an IOP or PHP? I just got off of the phone with an intake counselor at a highly recommended IOP/PHP and told her what happened at my previous stay. She said this new program (which is supposedly the only outpatient center in the country to deal with trauma and offers many of the modalities my previous inpatient program did) is structured to help people taper from benzos in whatever time frame their bodies can handle it, i.e., if I develop diarrhea or become so cognitively impaired, they realize they're tapering too quickly. My biggest gripe with the other program was I was not able to get anything out of the program because they tapered me so quickly, and in fact despite telling me they switched to a higher equivalency of another benzo, using some online calculations, they weren't giving me a full equivalency, much less more. Online calculators we used (3 of them) showed if I was on average taking 1.25 mg. of Xanax a day (.5mg at bedtime included), my Librium starting point should have been 62.5mg. They started me at either 45mg. or 30 mg. All I remember is it was the same pill three times a day. I can handle a little anxiety as I taper; I can't handle not being able to function and in fact, be so physically spent from little nutrition. Also, this program says from day one they consult with your primary psychiatrist and therapist. At my previous program, they never called my psychiatrist and didn't reach out to my therapist until the end of the third week.

Sounds good. Get all policies and promises in writing especially concerning your taper schedule. You may want to do a walk through and tour the facility. Plenty of places can make all types of wild claims and still will not follow through. This is especially true if the place is private pay.

This would be the time to research the place in depth. This includes seeing if they have any concerning inspections/violations or even pending lawsuit's. Ask to talk with someone who went through the program and had to taper benzos. See how the place is regulated. Are they JCAHO accredited? what type of medical oversight do they have?

I think the FTC has a good guide to follow for teens and residential treatment given the amount of fraud and malpractice that has popped up in the addiction treatment field. The guide can be used for adults as well. Don't just talk to the company get independent and verified info on these places from trusted sources. Treat it as you would any other serious disease. It sounds like you may be especially susceptible to a severe discontinuation syndrome which warrants caution though you may find that in the end the sedatives made it worse. You can get through this but it takes a lot more then listening to some admissions coordinator.
https://www.consumer.ftc.gov/articles/0185-residential-treatment-programs-teens

 

[thisismylife]

Thanks for the insight. After talking with both my therapist and psychiatrist this week, they don't feel this is the time to start digging deep into more trauma work as I am trying to make the adjustment with our move, and this IOP/PHP bills itself as the kind of place that is going to do that. The analogy someone mentioned was... it's like planning a nice dinner party, then the day before starting a kitchen renovation project. I also saw my GI doctor yesterday, and it's the first time it's been confirmed I've had a 10 lb. weight loss since mid-June (the rehab facility I was at never did another weight check after the first day I arrived, despite knowing about the diarrhea, and the dietician saying she was going to order weekly weight checks). The very first time I ever ended up on a benzo long term (6+ months of a low dose, although I realize the dosage doesn't necessarily matter for some people) over 25 years ago, my anxiety was so bad and a subsequent manifestation was that I lost my appetite. At 5'5", my weight dropped to 100 lbs. (it was an almost 30 lb. weight loss). Thankfully once the crisis past (I was being followed and monitored for possible thyroid cancer), and surgery took place, within six weeks, my anxiety started to go away with no medication changes, and I easily tapered off the Xanax completely with no symptoms. But 100 lbs. on my frame is waaaaaaay too low. Of course I put the weight back on, and over the years, then some. But the weight loss I've had since last summer when I started to develop PTSD is now reaching the 20+ lbs. mark; I'm at 126. So yes I have room to lose more if the anxiety continues, but my docs are very concerned about it and want me stabilized, whatever that takes before we attempt another benzo taper. And the timing right now is about as bad as it could get with the relocation. I also made some headway this week into getting referrals for a new therapist and new psychiatrist at our new location; I can take in the results of my GeneSight testing and we can work from that.

While I'm still willing to follow through with my assessment for the PHP/IOP program, my therapist reminded me that these admissions counselors can make all kinds of promises, and yes, I would need to get everything in writing. He is skeptical of many programs, and honestly, my experience has been that they are designed for people who are new to seeking psychotherapeutic help after they've had a hospitalization. I am not new to psychotherapy and even at the facility I was at, found so much of the material to be repetitive, which I guess was good since I was in no place to remember much in the way of specifics. So for now, I will keep taking .5mg ER Xanax until I can get in with a new psychiatrist and work on some of my other anti-depressant meds before starting a benzo taper.

 

[Prescottdave]

Have you tried CBD or even cannabis? Otherwise it sounds like your problems should be taken up with a specialist. The GI problems are not something to get diagnosed on BL. I found long acting benzos help stabilize a person suffering from benzo dependency similar to how long acting opioids like methadone and suboxone are used for opiate dependency. Your mileage may very.

 

[thisismylife]

I have not tried CBD or cannbis yet, although both are now legal in our new home state, and I am about at the point where I might consider it. However, I'm on several other medications for chronic conditions, and it scares me a bit to try something that is not being overseen by a physician. In my high school and college days, I did do my share fair of week, but haven't done that in 35+ years. I know it has changed.

I wasn't really looking for a diagnosis. The inpatient facility I was at kept trying to convince me the diarrhea was from the detox and/or anxiety itself. And I kept telling them I wanted to see a GI doc, which by the time they finally got around to getting an appt. for me, it was silly to stay there because I wasn't getting anything out of the program, and I only had two weeks left. They had a whole lot of questions they'd ask every day at my assessment, but they'd never ask me about GI issues; I'd always have to bring it up. In fact, even when I was so severely dehydrated and at the ER with my electrolytes off, I didn't have a headache. But they asked me about headaches every day. I was just wondering if anyone else had had persistent diarrhea while trying to detox from a benzo.

Actually, my GI doc I saw yesterday that's known me for almost 15 years thinks it might have been a viral infection since one of my lab results (monocytes) was abnormally high, indicating an infection. Of course, I might have just been susceptible to an infection because my immune system was so overwhelmed, but the GI system is not completely back to where it was prior to my admission to this facility. It's 90% better, but not 100%. Typically in the past when I've had GI issues related to stress, it's been a huge increase in GERD symptoms, so this was somewhat new to me.