Extinction burst

[cafe_bustelo]

I've been in a flare, or maybe it's better to call it an extinction burst at this point, for the past several days. It is the textbook instance where things were finally starting to actually get better—I was approaching pain free as my baseline!—then suddenly symptoms came back almost more severely than before my recovery began. I'm starting to come out of it again now thankfully but it's still rough.

For this entire time my mind has been set on "figuring out" why this happened of course, which I know isn't productive but sometimes it's hard to rein in your hypervigilant brain and it's taken me a few days this time around to get myself out of any fear around the symptoms. They were strong enough and lasted long enough this time around that they really scared me, even as I've trained myself to not react to them as strongly, I still was kind of taken by surprise.

I've let go of any physical triggers and basically realized that the reason insomuch as there could be a reason was that I'd spent a day or more prior to the return of symptoms completely falling back on my old habits of berating myself as a way to self-motivate, rushing from one thing to the next without taking a moment to appreciate anything, and nervously going from distraction to distraction while avoiding any actual feelings I might have been having—and I sure was having some feelings, as journaling and talking with my partner has revealed. I think it's easy to think, great, I figured out the whole TMS thing, now I can forget about it and go on living exactly as I used to (unsustainably—in emotional terms). Doesn't work that way!

I have basically had this happen before a few times (with varying degrees of symptoms), so I guess that just means it hasn't truly sunk in yet.

 

[Rabscuttle]

I don’t know if the extinction burst thing is still an accepted idea in this space. It just sets people up for disappointment and depression. The nature of TMS recovery is concentric circles. So you’ll have moments of genuine progress, then the brain ups the ante trying to get you to fall back, you handle that well and the brain tries again. Eventually the brain realizes your change is legit and there’s no more tricks it has and no point in generating symptoms. Something can only be an extinction burst in hindsight, when you no longer have symptoms. So it doesn’t really exist. What’s the difference between an extinction burst, or symptom imperative or the final flare? You’re progressing, that’s what’s important. hold that dear to your soul and keep doing what you’re doing
.

 

[Joulegirl]

Recovery is not linear so this is very common to have a flare, get better, then have a flare again. I tried to figure out my flares, but all that really did was distract me. Instead I just went about my life. And sometimes my flares would stay, sometimes go away pretty fast. Just watch your attitude with this latest round. Does it scare you? Do you have fear? Can you find something in your life to enjoy while you are going through it? I used funny shows and movies to laugh and to keep living my life. I connected with a friend or significant other as well.

Also check in with your thoughts. Are you pressuring yourself to heal? Are you giving yourself compassion? Your thoughts can also bring about flares. You mentioned berating yourself to self motivate. You may need to slow yourself down and recognize how far you have come! This is going to take time to learn and stick with it. Most of my life-I was my own worst enemy. Now that I am learning a different narrative and giving myself compassion, I can see this won't be fixed in a day, month, or even a year for me. But each day I practice so this will become my new narrative.

 

[Cactusflower]

I've been in a flare, or maybe it's better to call it an extinction burst at this point, for the past several days. It is the textbook instance where things were finally starting to actually get better—I was approaching pain free as my baseline!—then suddenly symptoms came back almost more severely than before my recovery began. I'm starting to come out of it again now thankfully but it's still rough.

@cafe_bustelo I'm right there with you and have been here for a few weeks. One of the folks that helps me the most is my PT (which I don't recommend for everyone, mine has been focusing a lot on the nervous system as he is learning to better navigate his chronic patients) - he reminded me that even as we are "doing better" our nervous system is quite yet to baseline. So small things can be a trigger. It's navigating these times that helps the true sense of safety within the body. That it is not a failure, that there is nothing at all to solve. That it's OK to dial life back during these times so we can have some stillness and listen to the body, turn to our emotional world and yet at the same time keep going with daily life to keep us with a small distraction from getting too caught up in the mind and "overthink" the crap we tend to overthink.

What can feel like "starting again" might simply be re-setting to a new level of being and to just let it happen.

It is also a great time to slow down and see where TMS can effect you in other ways than the typical symptoms you've been experiencing. Eg. on my recent vacation it was lights, people getting to close to me in an unfriendly way (not violent, just sort of attempting to elbow me out of the way) = invade personal space with the intention of expanding their own, fast movement, or a combination of things: these things all still make my nervous system say "alert" - and when I'm already on slightly high alert they just add to the load.

 

[cafe_bustelo]

Thank you all for the responses here.

@Rabscuttle I wasn't aware that people on here are not so hot on the term "extinction burst" and I can see how it could set you up for disappointment. I did suspect that it was more of a gentle reframing of, yes, the same ups and downs of recovery (flare, symptom imperative, etc) rather than an actual studied phenomenon. The alternative view, I think, in favor of the term is that it's reframing a "flare" which can sound scary as an "extinction" burst, i.e. something that is by its very nature temporary and on its way out, even if you in fact experience many throughout your recovery/life. For me that's a useful mental device even if I know its purpose; I am a person very obsessed with language and I think there's power in the words we use or don't use. One thing I'm learning is that I can scare myself with certain words. There's a reason we all use the word symptoms instead of pain, etc. I know you all get it. I don't know if Alan Gordon and Alon Ziv would say this directly but I suspect that is part of the thinking on their part (and I am not just blindly accepting their book as the bible in terms of recovery, just one of many resources to avail myself of).

Also check in with your thoughts. Are you pressuring yourself to heal? Are you giving yourself compassion? Your thoughts can also bring about flares. You mentioned berating yourself to self motivate. You may need to slow yourself down and recognize how far you have come! This is going to take time to learn and stick with it. Most of my life-I was my own worst enemy. Now that I am learning a different narrative and giving myself compassion, I can see this won't be fixed in a day, month, or even a year for me. But each day I practice so this will become my new narrative.

Thank you. I actually had an extra three paragraphs in my original post about realizing that I was really just not taking care of myself emotionally at all, not having self-compassion, and yes, needing to heal by a certain date (I have a certain event coming up that I'm putting pressure on myself to be better for). But I deleted them because I didn't want to be going on and on.

@cafe_bustelo I'm right there with you and have been here for a few weeks. One of the folks that helps me the most is my PT (which I don't recommend for everyone, mine has been focusing a lot on the nervous system as he is learning to better navigate his chronic patients) - he reminded me that even as we are "doing better" our nervous system is quite yet to baseline. So small things can be a trigger. It's navigating these times that helps the true sense of safety within the body. That it is not a failure, that there is nothing at all to solve. That it's OK to dial life back during these times so we can have some stillness and listen to the body, turn to our emotional world and yet at the same time keep going with daily life to keep us with a small distraction from getting too caught up in the mind and "overthink" the crap we tend to overthink.

What can feel like "starting again" might simply be re-setting to a new level of being and to just let it happen.

I really appreciate this. It does feel like starting again in a way, even though at the same time the quality of my symptoms feels different than previous flares: it's still been intense, but not as widespread in my body and not as all consuming. I'm not at the point yet where I can just not care about it at all, but the fear hasn't had me in its grip the entire time this time around, I've been able to put it aside and do enjoyable things anyway without being intimidated.

 

[Adam Coloretti (coach)]

I've been in a flare, or maybe it's better to call it an extinction burst at this point, for the past several days. It is the textbook instance where things were finally starting to actually get better—I was approaching pain free as my baseline!—then suddenly symptoms came back almost more severely than before my recovery began. I'm starting to come out of it again now thankfully but it's still rough.

For this entire time my mind has been set on "figuring out" why this happened of course, which I know isn't productive but sometimes it's hard to rein in your hypervigilant brain and it's taken me a few days this time around to get myself out of any fear around the symptoms. They were strong enough and lasted long enough this time around that they really scared me, even as I've trained myself to not react to them as strongly, I still was kind of taken by surprise.

I've let go of any physical triggers and basically realized that the reason insomuch as there could be a reason was that I'd spent a day or more prior to the return of symptoms completely falling back on my old habits of berating myself as a way to self-motivate, rushing from one thing to the next without taking a moment to appreciate anything, and nervously going from distraction to distraction while avoiding any actual feelings I might have been having—and I sure was having some feelings, as journaling and talking with my partner has revealed. I think it's easy to think, great, I figured out the whole TMS thing, now I can forget about it and go on living exactly as I used to (unsustainably—in emotional terms). Doesn't work that way!

I have basically had this happen before a few times (with varying degrees of symptoms), so I guess that just means it hasn't truly sunk in yet.

We may have discussed this before but I think both sides of the coin on the "extinction burst" discussion are valid (even though I would lean towards what Rabscuttle said). It probably does depend on the person (it will help some people and hinder others) - and Alan has that view from a huge amount of clinical experience (he is of the opinion to tell people of the possibility of one before it happens) - which I respect.

One of my favourite parts of The Way Out is when they talk about the three stages of relapse. The idea that you can't skip the panic and forcing it steps I think is brilliant and so true (it's also super comforting). I've had two flares in two years, but even with the most recent one, despite my knowledge and experience, I was trying to figure it out and force it. I think it's a completely natural response for the brain to go there (which Alan himself details going through after his main recovery). You can probably reduce the amount of time you are in that phase and learn to accept more, but if you're expecting yourself to be completely indifferent and not go into "fix it" mode at all then I think that is a big ask. We are always works in progress.

All the reflections and lessons you've taken from this experience are perfect. You haven't let the fear grip you as much this time around, and this will just keep improving as you go. You have also learnt from the flare itself (and I think figured it out in this sense as much as you need to) as it's pointed you back towards self-compassion. From when you've started, the fact that now you point towards how you treat yourself as the reason for the flare rather than a body problem is really healing summed up (this shift is a huge reason for a reduction in fear in general). You have successfully received the message of the symptoms - that doesn't mean it will never happen again as we all of much to learn about life and ourselves, but at least now there are some positives to take from flares (even though they are annoying!)