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Is this Kindling?


[mi...]

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If I changed clonazepam generics from Accord to Teva of clonazepam and destabilized, then a month later switched to liquid of a different brand of clonazepam and destabilized further, then a week later changed back to the Teva and got even worse, then finally after a week was able to change back to original Accord pills, all of this in about two months, always roughly same dose and always clonazepam, could this cause kindling or is that only when you try other meds or stop and start. I made a lot of rapid brand changes in a short amount of time. Each change sensitized me further and my system is now totally heightened and I’m borderline disabled. It was like each change brought on new symptoms and further chaos. Do we just say my cns is in need of a break or or this actually called kindling. 

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Hi Mikeyjoed,

I’m following because I’ve been talking off Accord Clonaz for 9 months and my next months script is from Solco brand and the pharmacist said they were again changing to yet another brand! I absolutely hate these people! It seems to bother some of us because we’re so sensitive. I have heard others say it levels out after a week or so, but still, it’s not helpful at all. The measuring alone is enough to send us over the edge. 
 

I don’t think you’re kindling. I believe that happens when you come off a drug completely and then reinstate. The generics can differ in active ingredient +- 20%, which is insane, so that could be causing the issues. Every cut or change is a little (or large depending on magnitude) jolt to our CNS. It makes sense that all of the switching has thrown you off, but I believe things should settle down shortly. I’m curious, where did you find Accord brand? The manufacturer was closed down or stopped and I was told they had no idea when they’d resume. Im going to have to take my chances with Solco and others unless I find A LOT of Accord.

Again, I don’t believe you’re kindling. None of this is fun. I hope you get more input. 
 

CKing

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What you went through is not kindling. Kindling is only when you start and stop the drug. I can see you are struggling immensely and you are desperately trying to figure out what caused this and how to fix it. I hope you are not stressing yourself out over this situation because I know for myself stress only serves to make my symptoms much worse. When you're in the thick of things it doesn't feel like you'll ever see the light, but I'm sure you just need to wait it out and it will get better. :hug:

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@[CK...] I got a six month supply of accord from a local pharmacy. They said they still have four more months they are holding for me so that will get me into next summer. Hopefully there releasing the drug by then. They are not discontinuing it, but they don’t have any idea when it will start, all depends on when they and the FDA can agree on, some changes that need to be made. I’ve been told that could be by the end of this year but that’s no guarantee. 

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@[je...] I am desperate beyond anything you can even imagine. I am so unstable I am having severe akathisia, and the benzo belly is beyond anything I can handle. I feel like I’m coming out of my skin from my core and I cannot stop the intrusive thoughts. I was so stable before all this happened. I have no idea what’s going on. I hold for three weeks, and I had some windows mixed and they were small but noticeable. I panicked last night and cut 2% of my dose after 3 weeks of an indefinite hold because I thought I was having bad side effects from being on the drug because my brain felt weird and now the akathisia is even worse today. I don’t know what to do and I can’t stabilize. It’s been two months and no real improvement that I have been on my original medicine. I wonder if I permanently damaged my receptors by switching to those other drugs and my body cannot switch back to the old one again.

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I'm so sorry @[mi...]. Have you considered updosing to try and gain more stability? I'm always scared to make suggestions as I'm worried it will make the situation worse. But if the cut made symptoms worse, I'm wondering if updosing might have the opposite effect?

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@[je...] UpDosing makes me agitated every time and feels extremely paradoxical unfortunately. I hate this drug but I’m stuck on it for the time being .157mg K. Seems so low but it really isn’t when you’re as sensitive as I am. 

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Well, it's good you know that at least. If it were me, I would just keep holding. It seems your default action is to cut, which I don't think is necessarily the best course of action. I know when we're in a tough spot it feels wrong not to be doing anything. But sometimes it's really just the best to try and give a proper hold a decent chance at success.

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@[je...] I’ve talked to a lot of people and they have all recommended holding. It scares me sitting still. It’s like when things are wrong I feel like I need to change everything. I was even debating going inpatient and having them change me over to another drug to see if that works better even though I know that would destroy me. I was fine holding and then all of a sudden my stomach got really bad over the last three days and I started to feel really depressed and I panicked and blamed it on the klonapin and did a cut. Have you seen people get significant relief over time when they do a long hold? I know I need to hold longer than three weeks to really see benefits. I probably should’ve held for a few months but I panicked.

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Yes, I have seen some people become stable after several months of holding. I can see you are panicking and I think right now you are your own worst enemy (and I don't mean to criticize you). I'm saying that to help you. I think the panic, the stress, the over-analysing and trying to find a solution right now is not working. You sound very much like me - a person who is used to be in control of their lives and decisions. And when you're not in control and you cannot make contingency plans or predict what's going to happen in the future or how long it will take, your entire world is turned upside down. You don't know how to do life if you don't have some level of control. I get that. So you try to take control by making cuts (as that worked before) or if you can't do that and there's no actions left, you exhaust yourself by over-analysing things. That is what makes this so situation so difficult, the not knowing. I can tell you a thousand times that it will likely get better if you stop fiddling and just hold, but your benzo brain and your innate nature to control is really struggling to accept the not knowing part. It's really hard to accept doing nothing when we have to fight against withdrawal and we want relief from our symptoms. 

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@[je...] you just read my mail. Every single thing you just said, every single word is 100% dead accurate. Thank you so much for speaking to my heart. I needed to hear that dearly. My wife and I were just praying a little while ago, we are both deeply people of faith, and I just told God I need to yield control, and it’s the scariest thing in the world for me. Whenever anything goes wrong and I feel horrible symptoms I immediately want to cut because it’s the only thing that gives me control. Or I take hydroxyzine or a beta blocker or other things that I know don’t help me and make me worse but at least it’s doing something I’m not sitting still. I overanalyze everything to the point where I’m about to throw up.  My world is upside down because for the first time in years, I have zero control over how I feel and doing nothing feels terrible. I used to cut every two weeks and it made me feel better and it was a control thing. I’m so scared and I can’t make the stomach go away and it hurts so bad and it’s driving my anxiety to levels I didn’t know I could handle. Thank you again for talking to me like you just did. I needed every word and please keep reminding me.

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In our normal lives control works for us. If we're unhappy with our jobs or if our kids get bullied we do something about it. If we sit and wait for things to get better it probably won't. So we've learned and our personalities have reinforced the behaviour that action in most scenarios is required. It goes against everything in us to just sit and wait for our lives to get better. In fact it might even make us feel worse about ourselves. It can be very difficult to recognise that waiting is an acceptable action step in this process and though we might not be comfortable with it, it is necessary. But you'll get there, you'll see. :smitten:

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@[je...] I hope you’re right. I’m terrified. All I want to do is something. Anything. I paced and walked 12000 steps today around my house I was such a mess. 5 miles. I can’t relax and let go. It’s intolerable. I need a window so bad. Had a few decent days last week but gut blew up to a watermelon again on Thursday and been here since. I can’t relax. Ugg. I guess I start holding again. 

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19 hours ago, [[m...] said:

@[CK...] I got a six month supply of accord from a local pharmacy. They said they still have four more months they are holding for me so that will get me into next summer. Hopefully there releasing the drug by then. They are not discontinuing it, but they don’t have any idea when it will start, all depends on when they and the FDA can agree on, some changes that need to be made. I’ve been told that could be by the end of this year but that’s no guarantee. 

I’m so glad you have enough for the year. You will start to feel better eventually. I know tons who experience the same sxs as you’ve described. Unfortunately, it’s typical. All you can do is eat clean and light and realize that you never really had control over much anyway. We just thought we did because we were so numbed out to everything. I’d suggest going slower, but you don’t seem to want to do that. It works for some, but if you can’t, you can’t. It does get better. Coping skill do actually help. They’re just annoying as hell because we’re not used to dealing with our anxiety. Tons of videos on this stuff on YouTube. Worth a look. 
 

❤️

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@[CK...] tons who experienced same side effects when switching brands or just in general? Also where did you find your info in accord being shut down for now. Did you call the manufacturer and if so when? I called them two months ago and they said they don’t know yet and wouldn’t know till Oct or Nov at the earliest but that they hoped it would be by end of year or beginning of next. 

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On 19/09/2023 at 12:30, [[m...] said:

@[CK...] tons who experienced same side effects when switching brands or just in general? Also where did you find your info in accord being shut down for now. Did you call the manufacturer and if so when? I called them two months ago and they said they don’t know yet and wouldn’t know till Oct or Nov at the earliest but that they hoped it would be by end of year or beginning of next. 

The side effects in general are fairly common and switching brands is sometimes enough of a jolt to the CNS to rev up whatever symptoms one typically experiences in their taper. I did contact the supplier with the same response. I’m going to contact them again. I’d prefer not to switch again and again. 

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@[CK...] how long ago did you contact them? And what did they say. I contacted them about 2-2.5 months ago and they said they’d know more in November or so and had a feeling it would be available end of year or beginning of next. I said could it be like a year and they said no not at all, months at the most. I find it interesting they said that in that they don’t know at all a date yet. Let me know what Accord says. 

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