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Tayloraine28

Tayloraine28: PAWS symptoms return after a year?

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Tayloraine28

Hello, everyone. I'm new here, but was a long-time reader over at Paxil Progress before it shut down. I actually thought a couple weeks ago how far I'd come and thought, "I should post a success story!" because I hadn't felt PAWS symptoms in an entire year by that point.

Well. Today and yesterday, I've hit a rough spot.

Let me start with that necessary evil, backstory. In late 2011 I was prescribed Abilify for the off-label treatment of trichotillomania, or compulsive hair-pulling. I did not have depression, anxiety, or any psychiatric disorder; my doctor prescribed this solely for the pulling.

When I decided it wasn't working, my doctor told me I could just stop. No taper - cold-turkey. So I did.

A week after stopping, I experienced the scariest few days of my life. I was sobbing on the floor of my dorm bathroom, having panic attacks in the middle of class - when I managed to make it to class, that is - and felt eerily detached from myself, like I was living a dream and going through the motions, but couldn't feel anything...and yet was constantly about to fall to pieces in a hysterical mass of tears and panic.

Then, about four days later, it ended. Boom, just like that - I was at work one evening, and suddenly felt like myself again.
 

I had no idea that this was my brain's first reaction to quitting the Abilify, and that many more were to come.

I experienced this again, in varying intensity (but always very intense and life-disrupting) several times over the next months.  When I became pregnant with my first child, I felt myself "stick at a baseline" below my normal, as though my brain delayed healing because it knew I needed to focus on the pregnancy more.  But I wasn't normal, or myself, or happy.  I was ...some other person entirely, the whole 9 months.  Then, as soon as I gave birth, the PAWS returned with a vengeance.

 

A year later, I began a regimen of Amino Fuel, l-glutamine, and magnesium.  I immediately saw marked improvement: my windows became longer, and I felt more and more like myself during them; the waves grew shorter and less intense.  By 2014, I had two or three days of feeling bummed out every 7 weeks or so, and felt like me most of the time now, even in my waves. My improvements were so good that by summer of that year, I could even feel safe drinking coffee again, enjoying wine, etc., which I hadn't been able to do without triggering waves until then.

In spring 2015, I became pregnant again.  I had a couple days of feeling bummed out as my hormones leveled out, but no PAWS symptoms for the entire pregnancy. I felt like me. I was happy, ecstatic even, to have another child (whereas the first time, I was so depressed it tainted the entire experience).

Upon giving birth, I did have a few days of severe baby blues, including a panic attack - I think it was the combination of epidural drugs and hormonal crash with perhaps a still slightly sensitive nervous system?  I had my placenta encapsulated, so I took that and magnesium for a few weeks; within four days, I felt 99% better, then back to myself a week or so postpartum.

 

Two nights ago, I chainsmoked a ton of cigarettes (and I haven't smoked cigarettes in over a year, just vaping low nicotine on an ecig) and drank a good amount of hard liquor (which I also haven't done in over a year).  The next morning, I woke up feeling like my early days of PAWS: pounding heart, sweat, too much adrenaline/panic, the world is falling apart, etc.

I calmed down after thirty minutes or less, but since then I've felt like I'm in a wave again - bummed out, random crying, lack of appetite, and more than anything this...relentless panic that I've done damage to my brain again, ruined my progress...or - the BIG worry, and hopefully the most ridiculous? Please weigh in - that I was never better at all. That because of my 2nd pregnancy, I just delayed symptoms and now my PAWS is back to stay. I realize logically that doesn't make much sense, because I have gotten immensely better over the years, hence this pregnancy was so much better than my first.

Anyway. I realize *technically* I haven't been symptom-free for a year, since I had a panic attack (or perhaps a combo of a wave and postpartum crash or baby blues) this past February. But still, that didn't feel much like a wave the way this does.  And it's been a while since I've had one like this - since 2014, most of my waves were "morning-only" where for a couple days I'd have symptoms in the morning, and they'd end very suddenly by noon. This one's been going on all day for the last two days, ever since the cigarettes and hard liquor I had at a wedding.

 

I'm sorry for such a long post. My brain is going a mile a minute with worry. I guess I want reassurance that I won't be this way forever...that my progress isn't all gone because of one stupid night of excess (which I definitely will not be repeating).

Also, just looking for opinions on how long my recovery's been - 4 and half years. That's a long time, especially since I only took Abilify three months. Is it possible it's taking so long because of my pregnancies, during which no waves or windows occurred (so I'm guessing, no healing for 18 months total during these last few years)?

Thank you for your help. I just hate feeling this way again after SO LONG feeling like myself, no symptoms, and would love reassurance.

Taylor

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scallywag

Just a note for myself and other acronym-challenged readers: PAWS = post-acute withdrawal syndrome

 

Two nights ago, I chainsmoked a ton of cigarettes (and I haven't smoked cigarettes in over a year, just vaping low nicotine on an ecig) and drank a good amount of hard liquor (which I also haven't done in over a year).  The next morning, I woke up feeling like my early days of PAWS: pounding heart, sweat, too much adrenaline/panic, the world is falling apart, etc.

I calmed down after thirty minutes or less, but since then I've felt like I'm in a wave again - bummed out, random crying, lack of appetite, and more than anything this...relentless panic that I've done damage to my brain again, ruined my progress...or - the BIG worry, and hopefully the most ridiculous? Please weigh in - that I was never better at all. That because of my 2nd pregnancy, I just delayed symptoms and now my PAWS is back to stay. I realize logically that doesn't make much sense, because I have gotten immensely better over the years, hence this pregnancy was so much better than my first.

Anyway. I realize *technically* I haven't been symptom-free for a year, since I had a panic attack (or perhaps a combo of a wave and postpartum crash or baby blues) this past February. But still, that didn't feel much like a wave the way this does.  And it's been a while since I've had one like this - since 2014, most of my waves were "morning-only" where for a couple days I'd have symptoms in the morning, and they'd end very suddenly by noon. This one's been going on all day for the last two days, ever since the cigarettes and hard liquor I had at a wedding.

 

Hi Taylor, welcome to SA.  Even though your exposure to abilify (which isn't the best treatment for trich anyway -- argggh) was brief, your doc recommended cold-turkey discontinuation.  That was unnecessarily brutal and has probably sensitized your central nervous system. 

 

As you know, both nicotine and alcohol are powerful actors in the brain. You consumed large amounts of nicotine and ethanol relative to your consumption over the last year.  It's either that sudden dramatic change, or a sensitized CNS responding, or both.  Also, as we get older our ability to tolerate decreases and the elimination process can slow down. 

 

You'll recover from this speed-bump, though maybe not as fast as you'd like or as fast as you once did. Hope you're feeling like yourself in a day or 2.

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Petunia

Welcome Taylor,

I moved your post from the symptoms forum to start your introduction topic. You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

 

I'm sorry you have had this set back in your recovery, it sounds like you were doing very well. After recovery, when withdrawal symptoms no longer occur, the nervous system can remain fragile for a few more years and so increased stress or excess alcohol, or other psychotropic substances can cause a wave of symptoms. But this is usually temporary, so don't worry, you just need to be careful for a while longer.

 

Do stay in touch and let us know how you are.

 

Petunia.

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Tayloraine28

Just a note for myself and other acronym-challenged readers: PAWS = post-acute withdrawal syndrome

 

Two nights ago, I chainsmoked a ton of cigarettes (and I haven't smoked cigarettes in over a year, just vaping low nicotine on an ecig) and drank a good amount of hard liquor (which I also haven't done in over a year).  The next morning, I woke up feeling like my early days of PAWS: pounding heart, sweat, too much adrenaline/panic, the world is falling apart, etc.

I calmed down after thirty minutes or less, but since then I've felt like I'm in a wave again - bummed out, random crying, lack of appetite, and more than anything this...relentless panic that I've done damage to my brain again, ruined my progress...or - the BIG worry, and hopefully the most ridiculous? Please weigh in - that I was never better at all. That because of my 2nd pregnancy, I just delayed symptoms and now my PAWS is back to stay. I realize logically that doesn't make much sense, because I have gotten immensely better over the years, hence this pregnancy was so much better than my first.

 

Anyway. I realize *technically* I haven't been symptom-free for a year, since I had a panic attack (or perhaps a combo of a wave and postpartum crash or baby blues) this past February. But still, that didn't feel much like a wave the way this does.  And it's been a while since I've had one like this - since 2014, most of my waves were "morning-only" where for a couple days I'd have symptoms in the morning, and they'd end very suddenly by noon. This one's been going on all day for the last two days, ever since the cigarettes and hard liquor I had at a wedding.

 

Hi Taylor, welcome to SA.  Even though your exposure to abilify (which isn't the best treatment for trich anyway -- argggh) was brief, your doc recommended cold-turkey discontinuation.  That was unnecessarily brutal and has probably sensitized your central nervous system. 

 

As you know, both nicotine and alcohol are powerful actors in the brain. You consumed large amounts of nicotine and ethanol relative to your consumption over the last year.  It's either that sudden dramatic change, or a sensitized CNS responding, or both.  Also, as we get older our ability to tolerate decreases and the elimination process can slow down. 

 

You'll recover from this speed-bump, though maybe not as fast as you'd like or as fast as you once did. Hope you're feeling like yourself in a day or 2.

 

Thank you, scallywag! You were right - in a couple days I felt back to my old normal self! Thank God. It wasn't even a terrible wave, but the fact I'd had one at all after so long without that scared me.  

 

You also make an excellent point about age; I'm 26, which according to most of my family was the age they started having to cut back liquor, give up partying, etc.  So I do think besides my cns being a little wonky still, I'm just...getting older, haha. I suppose I wasn't ready to admit that to myself ;)  C'est la vie, though. No need to go on smoking anyway, even "just at parties."

And yes, I can't believe my then-doctor put me on Abilify for hair-pulling. My case is pretty bad, and I was so desperate to stop, I would've tried anything she said would work. Of course, I should've read up on it myself before blindly agreeing. One giant silver lining of my PAWS experience the last few years is that I've learned how important it is to be your own advocate! 

 

Thank you again!

 

Welcome Taylor,

I moved your post from the symptoms forum to start your introduction topic. You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

 

I'm sorry you have had this set back in your recovery, it sounds like you were doing very well. After recovery, when withdrawal symptoms no longer occur, the nervous system can remain fragile for a few more years and so increased stress or excess alcohol, or other psychotropic substances can cause a wave of symptoms. But this is usually temporary, so don't worry, you just need to be careful for a while longer.

 

Do stay in touch and let us know how you are.

 

Petunia.

Petunia, 

 

Thank you, my apologies for sticking it in the wrong place, haha. 

 

And thank you so much for your encouragement, it means a lot to hear someone remind me, "Yes this was alcohol/nicotine, you're still healed/healing, and it'll most likely be temporary" - the whole situation, not just that particular wave - because when you're in the throes of it, that can just be so hard (if not downright impossible) to remember. Even though I'm feeling fine again, it's good to get reassurance. :) Sometimes it's hard to remember how far we've come, and having things like that to look back on really helps.

 

------

 

PS: For anyone who comes across this and is interested, I temporarily reinstated my old regimen of Amino Fuel, l-glutamine and 2 magnesium for the three days this wave happened, and I think it helped a lot (plus eating well, no caffeine, no cigarettes, no alcohol...). I'm a little gun shy to even drink my usual every-other-night couple glasses of wine just yet, but I think I'll be back to my old routines soon and will drop the aminos again (no reason other than expense, really) and the extra mag, to just my usual one at bedtime. They definitely helped during the wave, though.

 

Thank you guys again for your help! I'm feeling so much better now, not just because the wave is over, but about my recovery as a whole. It was disheartening to see a slip after such a long window, but it was good to be reminded it was just, as scallywag put it, a "speed-bump," not a roadblock or "back to square one" kinda thing. 

 

I'll try to update this with my progress in a few months, maybe post my success story after another year of no symptoms :) 

 

...only this time I won't mess it up by partying like I'm still 17, haha.

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scallywag

That's great news Taylor.  I'm glad it was temporary -- a good sign that you've healed enough that you recovered in a few days.

 

 

And yes, I can't believe my then-doctor put me on Abilify for hair-pulling. My case is pretty bad, and I was so desperate to stop, I would've tried anything she said would work. Of course, I should've read up on it myself before blindly agreeing. One giant silver lining of my PAWS experience the last few years is that I've learned how important it is to be your own advocate!

I've been dealing with trich for several decades now.  One thing that's helped me find some peace is to remember that it's something that I do, it's NOT WHO I AM!  Are you in remission now, or pf (pull-free) as trichsters call it? If not and you want information and support, a good resource is the TLC foundation (formerly Trichotillomania Learning Centre. It's founded by a woman who stopped pulling in her 30s (I think??).  They've expanded their mandate to include other disorders and now brand themselves as for "Body-focused Repetitive Behaviors."

Their website -- http://www.bfrb.org

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Tayloraine28

That's great news Taylor.  I'm glad it was temporary -- a good sign that you've healed enough that you recovered in a few days.

 

 

And yes, I can't believe my then-doctor put me on Abilify for hair-pulling. My case is pretty bad, and I was so desperate to stop, I would've tried anything she said would work. Of course, I should've read up on it myself before blindly agreeing. One giant silver lining of my PAWS experience the last few years is that I've learned how important it is to be your own advocate!

I've been dealing with trich for several decades now.  One thing that's helped me find some peace is to remember that it's something that I do, it's NOT WHO I AM!  Are you in remission now, or pf (pull-free) as trichsters call it? If not and you want information and support, a good resource is the TLC foundation (formerly Trichotillomania Learning Centre. It's founded by a woman who stopped pulling in her 30s (I think??).  They've expanded their mandate to include other disorders and now brand themselves as for "Body-focused Repetitive Behaviors."

Their website -- http://www.bfrb.org

I meant to ask if you pull too, I've only recently realized how common it actually is! I'm not pull-free and haven't been since I started at age 6, unfortunately, although it waxes/wanes overall. Right now I have no eyebrows/eyelashes and use makeup, but have gotten a really good handle on my scalp pulling - only one bald spot left to grow in. :) 

 

I pull in my sleep as well as when I'm bored, grooming, etc., so even though things like cognitive behavioral therapy helped, they didn't give me as much improvement as I would've liked. To be fair, though, I haven't done CBT in 8 years and i think I'd benefit from trying again.

 

Thank you for the info, I used to go to tlc.org all the time and actually just learned of their change to encompass all BFRB disorders a few weeks ago. My brother and parents have dermatillomania/skin-picking, so i'm guessing it's in my genes, haha. I worry about my daughter inheriting anything like that, but I know research and therapies are so much better than when i was a kid, so if she got it *knock on wood* I hope I could catch it early and help her in a way my mom just didn't know how.

 

You're so right - I spent my childhood and teen years thinking trich was a big ugly part of ME, but it's just...something i do. Accepting that and knowing my life could still be wonderful even if I never stopped was a huge step. Can I ask what your pulling is like, to what degree, what you've tried, etc.? Feel free not to share, if you don't want to

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scallywag

I've pulled from my scalp since I was 15. I started when I was bored during a study hall period in high school. Yep -- that far back when schools had study hall instead of free-ranging the students. There was a brief period where my eyelashes were a temptation and I gave in; like many with trich there were certain ones for very specific reasons that HAD. TO. GO. 

 

I've tried aversion therapy (elastic band on my wrist), 10 or so sessions of CBT, wearing a hat, wearing gloves, knitting (to occupy my hands and focus & stimulate my mind). The most successful for me has been CBT. The most enjoyable and productive has been knitting. I've made some great gifts for people and cool stuff for myself.

 

I've had a few periods of remission.  I intentionally stopped with willpower for the first one. I had really weird high nervous energy early on that time.  That's led me to a hypothesis: that the pulling itself changes nervous system response (a set of calming electrical/chemical reactions) and that when I/we stop the system has to adjust/settle down.

 

I'm still pulling and have a large patch on the crown of my head. I'm not putting any attention or energy on that right now.  In time I might try again, or I might just go with very short hair that is difficult and unappealing to grab. 

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