Trying to understand what's happening (Clonazapam)

[[Aa...]]

Hi Everyone--

I hope you've had a nice and anxiety free holiday.

I'm really struggling right and having a hard time understanding what's going on, how best to handle it. The headline here is "Does what's happening here sound familiar, if so, what's going on, and what's the best way to get past it?" -- the details are below...

 

I'm a 52 M with a long history of anxiety (especially health anxiety). After a couple of serious episodes in my 20s, a Dr. prescribed 1mg of Clonazapam (with 20mg of Paxil). I took that for 15 years and did pretty well. I knew that I should get off of the benzo, but I was afraid to try. Anyway, I eventually did a very slow taper in 2015-2016, and I was really happy to be benzo free. Still, there have been a couple times in the last 7 years where my anxiety got so out of control that a very brief return (1 or 2 nights) to Clonazapam seemed to break the panic cycle and I was able to keep on moving forward.

 

This past summer I decided I should switch from Paxil to a different SSRI (not an easy thing in its own right). And I was able to slowly cross taper from Paxil to Zoloft, which I've been on since mid-summer.

 

In early November, I had a health scare. One eye was getting blurry at a fairly rapid rate. That has now been diagnosed as a cataract, but my the first doc I saw couldn't explain what the cause might be, and I went into a full-blown spiral, panicking about MS/Brain Tumor, etc. I ended up having an MRI done, which pretty much settled that set of worries. I returned to Clonazapam during this period though with the intention of ceasing as quickly as possible. 

This was a bit of a roller coaster. Initially, it helped a good bit, but the obsessive health worries persisted, so I was pretty uncomfortable:

 

 

First weekend (Nov 3)

1mg clonazapam Friday night
1mg sat 
.75 sunday
.50monday
.25 tue 

125 mg zoloft

 

For the next couple of week of so, I was OK without any benzos, but my panic started creeping back in and I was again locked in a total obsessive loop, meaning I couldn't sleep or eat, etc. So, I went back to 1mg of Clonazapam, which again was effective, and which I again try to taper down from immediately:

 

Third weekend (Nov 16)
1mg clonzapam morning and night (Nov 17)
.75 sat 
.5 sun
.25 tue 

Back down to 100mg Zoloft

 

This time the anxiety started creeping back pretty quickly, and I decided "OK, I need to stabilize at 1 mg and then do a proper taper." Again, 1 mg did the trick:

Fourth weekend (Nov 24)

1mg clonazapam sat

150 mg Zoloft

 

I stayed on this dose until Dec 7 and which point I tapered to .75, which was probably too steep a cut, but after a few rocky days, things evened out:

 

Stayed on this does until Dec 7 
— dropped to .75 mg

 

From there I did the following:

 

Dec 11

— dropped to .675

Dec 14 

— dropped to .6

 

Up this point everything seemed fine. I was feeling pretty much OK, but then:

 

Dec 19 

— dropped to .5

Anxiety got increasingly bothersome during week and by the weekend I could tell that it was going to spike (i.e., nausea, insomnia, obsessive thoughts, etc.)

 

So, I went back up to .6 n Dec 23 but Anxiety spiked anyway with sleepless night / nausea.  

I took took .25mg the next morning which really only made me groggy

 

I thought, OK, I need to start the taper over and go really, really slowly. Went up to 1mg on Dec 24, but this time I didn't seem much improvement.

I took another .5mg the next morning but again just felt totally terrible all day. Took 1 mg that night with very slight improvement.

I took 1mg the next morning, felt terrible all day took 1mg last night (plus .25 mg of trazadone) and again saw slight improvement. I was able to sleep somewhat fitfully, woke up a few times with my heart racing and had to calm myself down in order to get back to sleep, but did manage it.

Throughout all of this, I've had low grade nausea/no appetite, which of course makes it hard to eat, and the combination of sleeplessness and lack of food really makes me weak. 

I'm feeling somewhat hopeless. I'm sure there is a path through this, and I know that I've been capable of managing a very slow taper. I just worry that something has changed. That I've somehow really broken things by going on an off as I did over the last few weeks. Obviously, my goal is to get back to zero benzos. But, I'm not sure what the best approach is at this point, and given that psychiatrists tend to take long Christmas holidays, I've not got anything in the way of clinical help.

 

At the moment, I'm planning to try to stay the course here at 1mg at night and hoping that my system will eventually "even out" at that dosage? But I don't know if that's the way it works or not... If that is possible, then I would begin working with a psychiatrist to manage a slow, slow taper (maybe with the addition of lyrica?)

* I need some encouragement / reason to hope that things can get stabilized again 

* any general recommendations?

* any recs for safe things that might stimulate my appetite/settle the nausea?

 

Thanks for taking the time to consider this. I know my anxiety disorder isn't going to go away, and no amount of therapy is going to prevent me from having difficult periods. As pernicious as benzos can be, they really have helped me by interrupting what was otherwise a paralyzing cycle. But, now for the first time, the benzos seem to be pepetuating their own paralyzing cycle

 

 

 

 

 

 

[[Pa...]]

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

I can see how determined you are and this will be in your favor as you learn to navigate this process.  

I’m hopeful your body will stabilize on the 1 mg but please give yourself plenty of time for this to happen, you’ve put your central nervous system and brain through some very chaotic times lately so allowing enough time for this is key.

Once you feel stable, which to us means able to carry out your daily tasks, it rarely means feeling good then it will be time to begin your taper.  We suggest reducing about 5-10% of your dose every couple of weeks, but actually, using your symptoms to guide you is best, this can allow us to function.

When approaching your doctor about a slow taper, it might be helpful to print out this document in case they’re not savvy in this area. https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

I’d like to point out too that we suggest tapering on one mediation at a time, its difficult to know what is causing what so making correct adjustments is tough.  

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

Pamster

[[Aa...]]

Thanks for responding Pamster. I also just reached out to Geraldine on FB.

I am sure I will have some more thoughts and will return with them, but I really appreciate your response.

 

Aaron

[[Aa...]]

@[Pa...] thanks again for your response. It has been helpful as have many other posts here on bb. I have , inevitably, run across the concept of kindling in my reading here. This is a fairly terrifying thing, which I had never heard about before.

I'm making some incremental progress with my symptoms, still hoping that I will get stabilized at 1mg so I can start to taper down (with longish holds).

I wonder if my rounds of going on, tapering quickly, trying to hold, but then going back up sound to you like a case of kindling or more like something a little less dire (e.g., my CNS, as you say, has been through the ringer a bit in the last 2 months and has gotten out of whack). Kindling is still a bit mysterious to me, and like most medical info on the web, what I’ve read about it sounds like it could apply to a really broad set of scenarios. 

I would like to kind of rule it out / stop worrying about it, because worrying about clearly is’nt going to do me any good.

 

Aaron

 

[[Pa...]]

Kindling is scary but even if it happens, a person can still recover, it can just hurt a little more getting there.

 I’m not sure your situation would qualify though, I doubt your body completely cleared the clonazepam since its half life is so long.  I have no way of knowing if this is the case since kindling hasn’t been studied in relation to benzodiazepines extensively but this makes sense to me. 

[[Aa...]]

@[Pa...]

Thanks again. Your willingness to share and help me think about this have been calming and given me a bit of hope when I’ve really needed it. I’m feeling significantly better at this point (though not 100% of course). I’ve spoken with my doc, and I’m going to hold here for a stretch before getting down to a slow slow taper. I know I’ve got a lot of work ahead of me, but today, at least, it feels possible, and that is a tremendous feeling compared to the despair I felt earlier in the week. I expect some setbacks, but I’m trying to buoy acceptance into my thinking about all of this.
 

I imagine I will be continue visiting the site to learn more and to seek community. Your efforts have been a real gift. Thank you.

 

Aaron

 

[[or...]]

Hi @[Aa...], you got the best direction from @[Pa...], she's helped me so much, and I'm 9 months into a slow taper after some bad times early on. I hope you will stick around as BB is my best support of all, so much info here from those that have gone before me, oregonlady

[[Pa...]]

10 hours ago, [[A...] said:

@[Pa...]

Thanks again. Your willingness to share and help me think about this have been calming and given me a bit of hope when I’ve really needed it. I’m feeling significantly better at this point (though not 100% of course). I’ve spoken with my doc, and I’m going to hold here for a stretch before getting down to a slow slow taper. I know I’ve got a lot of work ahead of me, but today, at least, it feels possible, and that is a tremendous feeling compared to the despair I felt earlier in the week. I expect some setbacks, but I’m trying to buoy acceptance into my thinking about all of this.
 

I imagine I will be continue visiting the site to learn more and to seek community. Your efforts have been a real gift. Thank you.

Aaron

I’m glad to hear you’re feeling a little calmer, this process can be brutal and since our recovery isn’t linear, its difficult to really believe we’re making progress, so I hope you’ll observe and record your progress.  Sometimes seeing it in black and white is the only thing we have to show we’re progressing, the drug tends to keep us in a state of despair so we need all they proof we can grab onto. 

[[Aa...]]

Hi again, @[Pa...]. I hope you are doing well. I'm finding myself in another painful spot, and much like the last time, the mysteriousness of it is making it harder.

About a month ago (as noted above), I went through a wave of too quick tapers and then found that going back to my max dose (1 mg Clonazapam) wasn't making me feel much better, which really freaked me out. After about a week at 1mg I started feeling a lot better. And for the last month, basically, I have felt pretty normal. Then completely out of the blue, this saturday, all of the anxiety symptoms came back (plus some new ones): nausea, insomnia, no appetite, intermittent chills, feelings of extreme fatigue that come and go...

My plan had been: get as stable as possible on this dose (1mg) and then start a very slow taper. But now I'm feeling pretty much as bad as I was a month ago. 

I know that every body is different and so every benzo story is different, but I'm just wondering if I have now run into tolerance, or whether this is just another twist in the process of stabilizing. I kind of would have expected tolerance to creep up gradually (as opposed to basically overnight), but I have no idea.

Any thoughts?

 

 

[[Pa...]]

I agree @[Aa...],I doubt its tolerance, it seems more like the mysteries of the drug.  Do you think there was a trigger for these symptoms, have you faced some recent stress, I’ve found this to be the number one reason for increased symptom severity.  What about new medications, or supplements, any changes?  

I would think that whatever this is, it should resolve fairly quickly since you report feeling somewhat stable until now. 

[[Aa...]]

Thanks @[Pa...]. I've wracked my brain about triggers, as you might imagine.

• I am supposed to have cataract surgery in a couple of weeks, which would appear to be a very obvious potential trigger. The initial ambiguity around diagnosing the cataract is what actually kicked off this terrible ride/return to Clonazepam. So, that's a fairly big contender. I haven't been actively worrying about the surgery, or at least not in any kind of obsessive way (which is very much my jam when I am seriously worrying about something). It has just felt like something I needed to get through, and I'm looking forward to being able to see a bit better... but, of course I am not looking forward to the actual surgery part.
• I had been avoiding gluten for the first couple of weeks but then figured I could probably risk eating gluten... so I've been eating lots of gluten, because I love gluten...
• I've been taking Magnesium Glycerinate for the last few weeks, which I know has some gaba receptor involvement. But I wouldn't think it would suddenly kick off a bunch of symptoms out of the blue
• We had several days of heavy rain at the end of the week/weekend, my wife thinks Barometric pressure is to blame
• No medication changes, but I did notice that the manufacturer of my Sertraline has changed (the pills look slightly different). The dosage is supposed to be the same (150mg), but I know that quality can be somewhat variable across manufacturers, etc. But I wouldn't expect small differences in Sertraline to have a dramatic effect?

 

 

[[Pa...]]

I can see you’ve given this a lot of thought, all or none of what you’ve listed could have caused this, its maddening, isn’t it? 

The only thing I can tell you is worrying about this development will prolong it, but how can we not worry when its so painful and frustrating?  I know I’m not much help but at least I can commiserate with you.

I am glad to know your wife is supportive, and think its wonderful she’s looking for clues. 

• What about gluten, why did you avoid it and why have you started eating it again?
•  And surgery is scary, yes, cataract surgery has the benefit of helping us see a little better but my goodness, getting your eye cut on, ugh!  I know its probably in my future too but it would sure make me nervous thinking about the actual procedure.

[[Aa...]]

I read somewhere on BB that eating gluten (maybe) activated glutamate in the brain, which then caused anxiety.

This (along with most things) seems to be a subject of debate. As far as I know, it hasn’t ever given me problems in the past, but I was trying to play it extra safe. Then, I felt like I was in the clear …. 
 

@[Pa...] I know you are right about worrying. I’m doing my best to stay focused on other things, but it can be very hard, as you clearly know.

[[ns...]]

Hi AaronTN, i found out today that gluten free has msg in it. All wheat bread for example has msg as far as I know. This is glutamate! Glutamate is an amino acid that stirs up histamine in the body. If u have allergies the msg will stir allergies. Got some gluten free bread today to see if it made a difference but i had the same reaction I do to everything else. To me I would suspect it has msg in it as it says online. If u don't have a issue with gluten, don't worry about it. If your doing good eating what u normally eat don't stress about it. Be happy!

 

Ns

[[Pa...]]

I didn’t restrict my diet when I was recovering, I know some members have made connections between their diet and symptoms but I don’t think there is a consensus on what causes what.  It’s just like everything else in this process, what works for one doesn’t necessarily work for all.

I hope your symptoms settle soon and I’m sure you’re planning to hold the 1 mg until they do? 

[[Aa...]]

@[Pa...] That has been my plan, but I'm suffering a lot at the moment and have been for the last 72 hours. Mainly, I'm just having so much trouble with digestive issues that eating is pretty miserable. I'm also feeling extremely fatigued, and my sleep is not good (not as bad as some people's but not good). 

When I'm able to focus on work, the distraction helps a little, but the nausea symptoms are very distracting and the fatigue/depression make it very hard to sustain focus.

I've got a call scheduled with my Psych nurse on Thursday, and she will probably recommend I updose. If she does, that will be hard not to do (but also hard to do).

I just so badly want to stabilize...  

 

[[Pa...]]

I’m sorry things are so difficult right now but if you have to go up in dose, it isn’t the end of the world.  Updosing is a tool, just like tapering and holding and sometimes we have to use it.  This could allow you a brief respite to fortify yourself for what comes next.  This isn’t a failure on your part, so please don’t feel that way.