☼ Train28: CT Abilify 7 years ago, had 3 years with no symptoms - Sudafed triggered new waves?

[Train28]

Hello, everyone!  This will be a long post, but I appreciate any advice, anecdotes, or insight the community can give me. 

I've never posted here, but I used to read everything I could on PP and feel like I know a lot of the people here, even though I've never spoken up/talked to them. Thank you for your stories and strength - they helped me during my worst days of withdrawal, and are helping me again now. 

The TL;DR version: I had three years of withdrawal windows and waves, then nothing for nearly three years after that - I was completely my old self, no symptoms. Then, this past March, I took Sudafed and have since had 4 waves. They're mild (apart from the current one, though it's still much better than my waves were several years ago) but it's still obviously a shock to deal with this again. Full story below. 

 

In late 2011, I was prescribed Abilify (2.5 mg up to 10 mg) for the off-label treatment of trichotillomania/compulsive hair-pulling by my college campus psychiatrist.

I had no prior history of mental illness or anxiety, aside from mis-diagnosis of depression at age 15 (my father had just died - of course I was emotionally depressed, but for a doctor to pin it on a chemical imbalance vs. actual grief was, I now believe, malpractice.  Moving on).

The doctor told me it was safe to cold-turkey the Abilify when I said it wasn't helping. Obviously, I now realize she was very, very wrong - but at the time, not knowing better/being only 21, I trusted her advice and stopped the Abilify.

Within a week, I got an extreme and very sudden depersonalization episode.  It felt like I was watching myself in a dream, just going through the motions, and felt terrified but also numb.  Then, as quickly as it came on, it stopped one night at work, and I was "back to normal." 

 

A few weeks after that, I experienced a long bout of overwhelming anxiety, sadness, sensitivity to stress, "electrical"/burning feelings in my head (that I later learned were brain zaps), nausea and loss of appetite, darkened urine despite stronger thirst, excessive sweating, and fast heart rate.  All of this was worse in the mornings but, most days, would lift/ease up in the evenings, like a switch had been flipped. My "good days" still felt off, like I wasn't myself. I later realized this was the early stages of the waves and windows pattern. 

Four months after cold-turkeying Abilify, I became pregnant.  My pregnancy actually had no real windows or waves, but instead remained at a sort of baseline below my "real normal."  Like, I was sad and anxious, but functional and without "crashes" or dips.  I think my brain put its healing on hold for the health of the baby - because, as soon as she was born, the waves and windows began again, and for the next year established an even clearer pattern. I kept a very detailed log throughout all this, and can clearly see that each year got better, though at the time I felt like it was taking forever.

 

During that year I tried a lot of supplements, 5HTP and Ashwaghanda and the like, that I think delayed my recovery. So, in November 2013, I decided that I would no longer take individual amino acids/precursors, but instead would try a balanced blend with all the amino acids so my body could just pick and choose what it needed, if anything. I guess I was still working off an "imbalance" theory, which I now know isn't accurate, but since my appetite was so low I figured why not try it; it would at least help my nutrition overall.  It was TwinLab Amino Fuel (no longer made), a couple Tbsp a day, with magnesium citrate 2x at morning at night. 

Immediately, I felt better.  My waves lessened in severity overall (though some were just as long/intense at times), and my windows became longer and more normal - I felt more like the "real me."  2014 saw marked improvement, and 2015 was even better.  In May of 2015, I became pregnant again, and had a happy and joyful pregnancy. 

 

In 2016, I experienced a mild wave after giving birth, and another after smoking too many cigarettes at a party (I've vaped at a low mg nicotine almost constantly since 2010 or so; this was my first time smoking a lot of analog cigarettes in years).  

That was my last wave.  I then had almost three years of complete normalcy - no waves, no symptoms at all.  I was completely normal and back to my old self pre-Abilify - but even better, because I appreciated my mental stability more and had learned to accept my trichotillomania.  Because, no matter how much I hate the hair-pulling, it is SO much better to have that than the hell Abilify put me through. 

So...that brings me to now, and why I'm posting. 

In March of this year (2019), I took Sudafed for 4 days for a bad cold.  I'd taken a dose here and there in the past for colds, but never before like this: round-the-clock, every six hours or so (whatever the box advises), for days at a time, because it was a really severe cold and the Sudafed helped. 

On the fifth day, I woke up with panic, racing heart, excessive sweating, and that "the world is ending" feeling that so clearly marked my old waves. 

This lasted for about a week, and in retrospect was incredibly mild; it lifted around midday each day, each day was better than the previous one, and I was functional and pretty happy overall through the entire thing.  Other than being blindsided that I'd had another wave after three whole years without any symptoms, I felt good. 

By that point, I had phased my old regimen out over the previous three years, and was back to my "pre-Abilify" habits of one to two cups of coffee a day, a couple glasses of wine once a week if that, and only taking magnesium on nights I couldn't sleep.  I also hadn't used my DayLight/supplemented with vitamin D the previous winter, which I always used to do to combat seasonal fatigue. But I figured I "felt fine now" and just...didn't worry about it.  My diet probably wasn't great during those three years, either, but wasn't bad - just could have been healthier, I'm sure. Maybe all this played into it, who knows. 

 

Anyway, since my old amino blend was no longer available, I went out and got something called ProSupps Amino 23 and magnesium citrate, and briefly used my regimen again - figuring, "It helped back then, it'll help now."  It did ease the symptoms, and the wave lifted within a week. 

I figured I'd tripped something in my brain, but that it was a one-time thing and that, as long as I never took Sudafed again, I'd be fine.  Stopped my regimen again, aside from occasional magnesium for trouble sleeping. 

In early July, I took a course of nitrofurantoin for a UTI. By the final day, I woke up with another wave feeling - anxiety, sweating, heart racing, etc.  Like before, it was mild overall and lifted within the week, while I again started using my regimen, then again phased it out once the wave had passed. 

Then, in August, we moved out of my in-laws' house, where we'd been living for the last 1.5 years. Moving has been very hard, even though we're just a few minutes away from them - emotionally, I've felt isolated and lonely without other people constantly in the house, since my husband is working more (because now we have to handle more bills and higher rent again), and miss my dog, as well as my daughter's old school; this one is two hours earlier than her old one, and I don't do well waking up that early - she doesn't either.  A lot of changes in a short time, basically. 

I got a fairly mild wave for about 10 days off and on upon moving in, and started my regimen again some time in there. It lifted, and I thought, "Okay, no big deal, don't worry: you just triggered something with that Sudafed thing, and now the stress of moving is triggering a wave because of that - this is a lot to deal with, but you'll be okay." Kept drinking coffee (maybe 10 oz a day or less), had occasional wine with friends, and used Amino 23 and magnesium (1x a day) any days I felt more stressed than usual. Had a couple weeks of feeling totally normal, though emotionally I was still dealing with the move/missing my in-laws' house. 

WHELP.  For the last 5 days, I have been in a very bad wave.  It's much, much better today, and overall the entire wave is still better than a lot I had several years ago - back then, it was a miracle just to care for my daughter, whereas this wave, even on my worst days (when my husband and mom had to keep me company bc I hated the thought of feeing lonely) I can still shower, have a few laughs, go out doing stuff, etc. 

But the weird thing is that, this wave, the feelings aren't lifting completely at night like they usually do, and I've had extreme trouble falling asleep.  Rapidfire random thoughts, none of which are stressful but for some reason jolt me awake; racing heart; restless, have-to-get-up feeling, even though I was exhausted.  It was like my brain just forgot how to let me go to sleep, despite every other cell in my body wanting it more than anything.  I got a few hours the first 3 days and was a wreck, because I don't do well with sleep deprivation anyway; I get very emotional if I go more than a day or two without a full night. 

On the worst day, when I couldn't stop crying and couldn't sleep, my husband suggested CBD oil. I've never smoked or used any marijuana products, so I was nervous - especially because, since Abilify, I've become very vigilant about what I put in my body...Sudafed notwithstanding, apparently. 

But anyway, I tried the CBD, 10mg under the tongue 2x day, and while the results weren't amazing, it did allow me to FINALLY get sleep.  Not because it made me sleepy, or even relaxed me...it just "squashed down" the rapidfire thoughts and restlessness enough to where I could ignore it and drift off.  Still waking up too early, but the last 2 days I've been able to fall back asleep for a few hours.  And I haven't woken up in tears freaking out.  Not sure if it's the CBD and/or the wave on its way out anyway, but I'll be monitoring things closely regardless.  I know CBD is considered safe and doesn't have THC - I would never risk taking that for fear of a reaction - but I'm also being cautious because, had I done that with the Sudafed, I don't think I'd be having waves again. 

(On the other hand, it's also frustrating to still have to watch everything I put in my body...I know Sudafed is strong, and just because a drug is sold doesn't make it safe - I'm just venting my frustration, I guess, that I couldn't even treat a darn cold without my old Abilify BS rearing its head.)

I'm now taking 1 Tbsp of the Amino 23, as well as 200 mg magnesium citrate in the morning and before bed.  Been doing that the last week or so.  It does seem to ease my symptoms considerably and help me function, especially the magnesium.  I might try fish oil again because I know that and magnesium are the only supplements formally recommended here, but I'm nervous with fish oil because for some reason it tends to "key me up."  Maybe it's something I should take only in windows, rather than during waves. 

For anyone who this posts upsets, seeing someone who had total recovery experience another wave so far out - I want to emphasize that even this current wave is MILES above where I was a few years ago. The hardest part is simply dealing with it again when I thought I was in the clear, and lamenting taking Sudafed.  And for my long initial recovery, keep in mind that I had 2 pregnancies, a ton of life changes (graduating, moving a lot, marriage, kids), and supplements like 5htp that all might have very well prolonged that process. Even now, I'm far better than I was four or five years ago, and I have experienced immense healing. Please don't feel triggered or upset, because that's not my intention at all - everyone is different, and this is just my personal recovery timeline.  

Has anyone experienced waves after YEARS without symptoms?  I know this is still related to my Abilify withdrawal, because it feels identical to those waves (just milder than a lot of them), and I know it was triggered by the Sudafed because it was immediately after I stopped using that.  Not saying the move didn't genuinely upset me - just that, had it not been for the Sudafed thing, I probably wouldn't have had a wave because of the move. 

Also important to note, maybe, is that I tried birth control again for a couple months last year, which I hadn't tried since 2013. It made me too moody and emotional, so I quit it.  Maybe that played into things, I don't know. Maybe my gradual slide into not taking as good care of myself created a perfect storm for the Sudafed to trigger a wave?

I remember reading a long time ago about someone who had been symptom-free a while, then got dental work done and the anesthesia triggered a wave. So I know my story probably isn't the only one out there - I'd just love some reassurance and advice about this, and comfort that I will get better again.  I mean, as frustrating as it is to experience symptoms after 3 years without any, I also take solace in knowing those three years did happen - which means I could have three years again, or five, or more...or forever, symptom-free. I'm just in a tough spot right now, worrying and doubting, being paranoid that I set myself back with something as seemingly benign as Sudafed. So any help is really appreciated, even if it's stuff I already know - hearing it again always helps.

Anyway.  Sorry for the long post, but I had to be thorough for my own peace of mind.   

Edited September 17, 2019 by Shep
added new username to title

[brassmonkey]

Welcome Train-- It's interesting that old PPers are still finding us, we had another one just a few months ago.  I'm very sorry to hear that you're having a nasty wave.  I've only skimmed you post, so I need to reread it more carefully. but wanted to give you some reassurance as soon as I could.

 

It has come to light that there are a series of intense waves that follow making the jump to "0" at fairly regular intervals. One of which just happens to be three years.  This is more than likely what is happening.  It can be very frustrating and disheartening to have it happen after feeling so well for so long.  But they follow the pattern of most waves and clear up after several weeks leaving the person in an even better place.

 

We have more information on post "0" waves here:  https://www.survivingantidepressants.org/topic/17909-are-we-there-yet-how-long-is-withdrawal-going-to-take/?tab=comments#comment-354120

 

 

Thank you for filling in a signature block, it makes things a lot easier for us.  Also one last question, is this your real name, if so we need to talk, send me a PM.

 

Brassmonkey

Edited September 17, 2019 by Shep
edited - member has new username

[Train28]

Thank you @brassmonkey - that link was very helpful! I feel reassured to hear that it's not uncommon to have several months (or in my case, years) of recovery, then trigger one's symptoms again with something like alcohol.  I knew the Sudafed started my symptoms again, I just had no idea it would still affect me - but again, maybe I got careless, since the last couple years (thinking WD was far, far behind me) I've had lots of caffeine, poor sleep habits, ignored my vitamin D levels, etc.

I think I did slowly create a "perfect storm" for this current wave to happen - because, while I am genuinely upset by/having trouble adjusting to our move (even though I was initially happy about it, it's been a lot of change very fast), I don't think that move alone would have triggered a wave. I've had lots of stress and change the last three symptom-free years that didn't cause a wave.  So I think the Sudafed just...resensitized my nervous system?  Not completely, of course, because I'm still way better than I was several years ago - but that would make sense. 

[Train28]

Having a tough morning - just ruminating and getting caught in the "what if" thoughts.  Any reassurance appreciated. 

 

I know symptoms can reappear at any time, that our CNS can still be sensitized years out.

 

I know healing happens, because after years of waves and struggling...I had 3 years without any waves at all. The change was and still is noticeable. That couldn't have happened without immense healing, and I've been thanking God every day for that. 

 

But then I think... what if I never was healed? Was I fully healed like i thought, if Sudafed could still trigger this so far out? Why didn't birth control, or Z-paks I took? Coffee or alcohol? 

 

Then again - I couldn't use any of those things without triggering much worse waves back in my early recovery.  So I flip from "it's so unfair to stumble this far out" to "be grateful for how far you've come." 

 

Here's my basic timeline since I cold-turkeyed Abilify in 2012: 

 

-2012: Misery, with long deep waves and "so-so" windows. 

-2013: Misery again. Windows and waves about the same, with a turning point when I began a complete amino acids blend and magnesium in November. 

2014: noticeable improvement, with windows lasting longer and feeling more like myself, while waves lessened in severity (though not length, at least not right away).

2015: even better.  Started to really feel healed and see the finish line. 

2016: had 2 mild waves, the final one in May.  

2017: no symptoms

2018: no symptoms 

2019: no symptoms... until March, when I took that Sudafed. And then 3 mild waves, and now this really tough one that - while still far better than 2012-2013 range, is hitting me hard.  

 

I just.... thought it was all behind me.  Now I'm back to worrying I'll be this way forever. 

[eymen23]

Train28,

 

It seems you have developed some longer term sensitivity as a result of the cold turkey from Abilify. Indeed the Sudafed and a nasty cold appear to be the triggers for a period of heightened sensitivity. 

 

I want to let you know that this kind of sensitivity is not only common amongst those who have withdrawn from psychiatric drugs, but also can be seen in the general population. My research online over the years, shows me it tends to be particularly prevalent amongst those who have a history of anxiety or burnout, whatever the cause. 

 

Self-care is something I believe we should all incorporate into our daily or weekly routines. Vitamin deficiencies, lack of sleep,   medications, infections, emotional stress, excess caffeine etc. can leave their toll on all of us. Sometimes it presents over time, which makes the relationship less clear. 

 

It sounds like you may need to continue with some regular and habitual self-care to give your system a chance to calm down. It’s true that perhaps you will be a little more sensitive or prone to periods like this in the future, but with the right self-care toolkit, I have little doubt that this will remain very much manageable. 

 

Edited September 18, 2019 by eymen23

[Train28]

@eymen23 - Thank you so much for that.  I guess I knew it logically, but high cortisol and anxiety spikes early this morning threw logic out the window for a while, lol. 

 

That makes perfect sense.  I've actually always been very sensitive to certain medications, come to think of it - I'm the person who takes half a dose and feels a difference, or the one who has 2 drinks and is suddenly drunk. And I've been like that since long before Abilify - so the Abilify definitely could have sensitized things even further.  

 

Self-care has been lacking lately...a slow decrease during my 3 symptom-free years, wherein I steadily upped caffeine, ignored nutrition more, and worked more hours. I guess I was just so excited to have my old life back. 

 

But that's something I'm also coming to terms with: this isn't my old life.  I've been through too much to be exactly who I was/do exactly what I did before. I need to remember that caring for myself is critical - and that an ounce of prevention is worth a pound of cure (especially when the only "cure," really, is time). 

 

Thank you again. I feel much more optimistic now and will re-read your words whenever I need reassurance

[brassmonkey]

Hi Train-- Thank you for the year by year summary of your journey.  It is really helpful because we don't get a lot of detailed information looking back on the experience.  It's different that trying to sort through daily posts while it's happening.

 

Your comments show that you have a good understanding of what is going on, but that you need to work on the acceptance of the changes in your life and truly incorporate them.  The idea that ADWD is a life changing event and things will be different from now on is a hard one to get across to people.  Yes life will be different, but it can be a lot better if we work with the lessons and changes we have been through.  We will be stronger, know ourselves better and be more resilient to what life throws at us.

 

We use the term trigger for a reason.  It is the event that releases all the pent up energy, frustration, anxiety etc. that has been building up over a period of time and lets it come flooding out.  It sounds like the past three years have been very eventful for you and that you have been coping as best as possible, but thing have built up in the background and just needed a little push for it to all come out.  After something like this happens I find that I am totally exhausted for several days to a couple of weeks and then move to a better level then I was at before it all happened.  I'm going through something like that right now,  had a very big explosion a few days ago, triggered by innocuous events, but it let out a lot of pent up "stuff" that needed to come out.  It's one of the steps of healing. 

[Train28]

@brassmonkey you're very right - once I took stock of the last few years, I realized that it's brought lots of stress and big changes. I think I assumed that, since I had no waves, that meant I was handling things well and caring for myself as I should. 

 

Looking back, I can see that I did handle some things well, but others were simply ignored. And moving out of my in-laws' house has been a much, much more saddening and stressful event than I expected - I had a literal in-house support system during overwhelming days with my kids, financial crises, or even tiffs with my husband. (Plus, I'm really fortunate to have great in-laws - they're like my own parents to me, and living with them was so much fun. I need to let myself miss them while working to make our new house feel like home.) 

 

This wave forced me to separate the "WD emotions" from the real ones, and admit to myself/ accept just how sad I am to be in this new living situation, and how my work schedule is interfering with caring for myself/ makes me feel like I neglect everything else. It's made me realize I have to work on those real feelings, not just the wave itself.  

 

I'm sorry you had a tough one too recently. That better level afterwards is an invaluable silver lining, though. I hope things are improving - and thank you again for your reply

[Train28]

(Just writing an entry to encourage myself when I start doubting things) 

 

I just read through Aeroman's posts about first recovering from AD withdrawal after years, then from Cipro withdrawal which he described as both different from his AD withdrawal, but also with this sense of "this s--- again?!" 

 

That's how I've been feeling. I was very blessed to not be given any flox antibiotics - they sound absolutely  hellish, and my heart breaks for those affected by them.  

 

I am inspired by the recovery stories, though - especially Aeroman's. Further evidence of the fact God designed our bodies and minds to heal. It just takes time and patience, which feels nearly impossible to have at times.  But we'll get there.  

 

Reading his story/ the responses so far to my post, I do believe Sudafed and the nitrofurantoin I took this year gave me a bad reaction because my CNS is sensitive, and that's why I'm experiencing this "return" of my Abilify withdrawal anxiety.  

 

Is it new anxiety? Is it a return of my WD symptoms, or a result of my WD and heightened sensitivity? Or did Sudafed and/or nitrofurantoin sensitize it again? Rhetorical questions - I know no one can tell me, and tbh I've realized it doesn't really matter why.  The fact remains that I'm sensitive to things now, and - just as with my previous withdrawal and recovery - I have to accept it, wait it out, take care of myself, and pray. 

 

Going forward, I know I will never again take drugs that list any kind of psychiatric things as side effects.  Even "excitability" or "nervousness." 

 

In the worst moments of the anxiety, I get caught in that loop of "I'm back where I started" - but that couldn't be further from the truth. 2012-2013, I felt like I was going crazy.  I had a huge list of physical symptoms I no longer have, thank God.  I couldn't function many days; others, I could hardly care for my baby girl.

 

This wave is tough not because its "just as bad as back then" - far from it.  It's tough because the anxiety and morning adrenaline are just reminding me so much of what I went through before, something I put behind me as much as I could. 

 

Aeroman got through AD withdrawal and Cipro withdrawal; I got through Abilify withdrawal, and I'll get through whatever the Sudafed and nitrofurantoin did to me.  

 

Again, just a note to myself no one has to respond (unless they want to). I just want to remind myself of this when I read over my thread again. 

 

I'm praying for myself - but also everyone on this site ❤ 

[Glosmom]

Great post, Train!  You've go this.  Best Wishes, Glosmom

[Train28]

Thank you, @Glosmom!

[Train28]

Really rough night right now...that deep-down, in-the-bones shivering (despite not being cold) and excessive cortisol, jolting awake the second I do manage to drift off a little...I think I slept 2 hours at best. 

 

I took 20-30mg CBD (no THC) and magnesium before bed, then more CBD after waking at 2 am and not being able to sleep again due to the anxiety, sadness, mind chatter. 

 

I cried to my husband and mother yesterday, admitting utter confusion as to why God has allowed this to happen to me again. I know He hasn't forsaken me, and I know I may never understand why this debilitating anxiety is back, now with insomnia. I had some in my initial stages of Abilify withdrawal... but not like this. It feels relentless, and nothing seems to make significant difference when it's this bad.

 

My body wants to sleep. I want to sleep. But as soon as it starts to happen, my brain feels out of my control and won't let me. 

 

On a positive note, I did have a few much better days last weekend. Still didn't sleep normally, but better than previous days. I had more moments of feeling myself.  In fact, I was certain this "wave" was on its way out. 

 

Then swiftly... things went back downhill. The anxiety is now combined with depression, lasts throughout the day, and lifts enough before bed that I become hopeful again.  

 

Then I try to sleep, and bam - racing random thoughts and anxiety. It's made me scared of sleeping now. 

 

I've been thinking the antibiotic (Macrobid) is far more at play than I first suspected. Sudafed did trigger a mild wave in March, but then nothing for 4 months - until I took the nitrofurantoin. 

 

I'm finding so little information on it... what I have found is that adverse reactions to that antibiotic can mimic "floxing" from Cipro and the like very closely.  

 

I don't know if my CNS was simply still sensitive from my Abilify withdrawal, and that's why I reacted to the Macrobid that way - or if I would've had a reaction regardless.  I'm so scared right now that I'm going to get worse and worse, be stuck like this, etc.  

 

I've heard those who have recovered from benzos are much more prone to adverse Cipro reactions - so it's not at all unlikely that's the case with me from the Abilify and Macrobid. But to not know what that recovery process might look like is so nerve-wracking - at least with my Abilify withdrawal, I knew there was a general pattern of windows and waves.  I've got no idea if this reaction to nitrofurantoin will follow that generally upward trend, suddenly improve or go away, etc.  

 

I really want to stay positive and rely on God - doing so in my Abilify withdrawal was crucial to my recovery.  I'm just in a hard place right now. I know I should stay off the internet, but it feels compulsive - much like when I first had withdrawal syndrome. 

 

I keep searching for answers I know no one can really give me, like why did this happen, how long will it last, what can I do to fix it. But I know all I can go is take care of myself, pray to God, and wait. 

 

@Aeroman said (hope it's okay to tag him) it took God and time, in both his recoveries. I know that to be true from my first one, too. Magnesium and the amino acid blend gave me a huge turning point back then, yes, but even then it took several months to see the full results. 

 

Side note, as of two days ago I'm now taking a probiotic midday. I haven't noticed a difference yet, but I know it's not instant.  

 

If anyone has antibiotic recovery stories to share, whether before, during, or after their withdrawals from psych meds, I'd appreciate them a lot! 

 

Phew.... long post, sorry! Just had to get all that off my chest.  

[Train28]

Just an update so I don't forget...as of yesterday, I'm only taking magnesium citrate 200 mg morning and night (right after waking and right before sleeping), and right now some D-mannose...went to the ER yesterday hoping to get some bloodwork/levels checked, which the doctor refused to do because my vitals were normal, and they discovered a UTI again. She wanted to prescribe Keflex, but obviously I'm very hesitant to take an antibiotic after all this...so I told her I'd wait for the culture and go from there. 

Other than a slightly increased urge to urinate, I had no symptoms for this UTI...usually I get back pain and a fever/sick feeling from UTIs.  Maybe it's early enough that the D-mannose and water will help. If not, I'll try the Keflex I guess. 😕 

Mood-wise, I'm seeing some windows each day; sometimes they're only a few minutes, other times they're for hours with slight lingering symptoms, but enough to make me hopeful.  

The main reason I cut the Amino 23 (I should note, I've  never taken this particular amino supplement consistently/longer than a week-ish until this episode started ~18 days ago), as well as the probiotic (3 days), and CBD (I think 14 days?) was because I noticed a severe decline over the last few days...anxiety actually seemed better, or was overshadowed by new symptoms of depression, OCD and intrusive thoughts that scared the **** out of me and made me question if I was stable/sane. I have no idea if any of my supplements caused it...but since I can't be sure, I decided to back off everything but the magnesium for now (since I've taken that for years, same brand and type/measurement) to see if things improved. Early to tell, but right now I feel better.  If it weren't for the UTI, I wouldn't be taking the D-mannose right now - but I really hope I can get rid of this without another antibiotic.  

I cried really hard to my mom and husband again today, saying I just want to be myself again.  This has brought up so many emotions I left behind when I recovered from Abilify, and yet also feels like an entirely new mountain to climb. 

It's been 18 days, but feels like weeks and one day all rolled into one.  It feels like I've been this way forever and always will (a common "wave" symptom, I keep reminding myself) - and it's challenged my faith in so many ways. 

I cried out to God in a way I haven't done in years, begging Him for help. Today I watched a Joyce Meyer video about how the battle isn't ours; it's God's. While I'm also grappling with the unfairness that I have to be "in" this battle after my Abilify one...I do take comfort in knowing and reminding myself that giving it to God was exactly when I saw my turning point in Abilify withdrawal: I stopped the compulsive research (which is immensely helpful, but we can all agree it can go too far and upset us, too), prayed, and the next time I happened to research - while I was calm - I found out about magnesium and Amino Fuel, which helped me immediately. God led me to the right resources at the right time...and only when I truly gave my battle to Him. 

 

Again, this is more of a note to myself than anything, to read in times I start doubting. 

Some Bible verses I found that help me (maybe they'll help someone else, too, even though this entry is a note to myself!): 

"Return to the stronghold [of security and prosperity], you prisoners of hope; even today do I declare that I will restore double your former prosperity to you."

— Zechariah 9:12

"Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He shall direct your paths." -Proverbs 3:5-6

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11

[Train28]

Also, just a positive note - I was evaluated by a psych doctor there, and explained everything...the Abilify protracted withdrawal, the 3 normal years afterwards, the Sudafed wave, and now this with (I'm assuming) the antibiotic since July.  She agreed with everything, saying, "Absolutely, those medications can cause symptoms like these."

And while she couldn't make suggestions as to what would "fix" it beyond time and some counseling, her validation of my gut instinct was SO reassuring. My mom and I actually cried with relief, because as soon as the ER doc mentioned a psych screening, I assumed I'd get thrown an rX for Xanax or something and dismissed. On the contrary, she listened intently to all my concerns and even shared a few stories of similar instances she'd encountered - like several patients who presented sudden anxiety disorders after smoking marijuana. I guess I should also remember that when I start wondering "why me" and having a pity party: we all react differently to things. Some people can have THC without issue; others can't, as simple as that. Others take Sudafed or Macrobid and are totally fine - but I, apparently, can't. 

She also thought the magnesium and maybe adding vitamin D would be great, and that I might reconsider CBD in the future as long as it's definitely THC-free...my supplement says it is, and my urinalysis after using it said negative for THC, so I believe it). 

Anyway...just wanted to share my positive doctor story.  Of course, the ER doctor said, "None of those drugs you mentioned can affect you this far out." It felt good to tell her the psych doctor said the exact opposite, haha. 

[eymen23]

Train28,

 

It sounds like you’ve been fortunate enough to talk to a very understanding and well read doctor.  

 

An interesting point about Sudafed, is that it’s a drug well known to worsen symptoms of restless leg syndrome. So, there’s certainly the potential for it to trigger a wave in somebody with any kind of central nervous system sensitivity. In all honesty, my experience has shown me that a sensitive nervous system has the ability to react unfavourably to almost anything. Long before I took an antidepressant, I found I had issues taking too high a dose of omega 3 or vitamin d3, despite both being ‘healthy’ and taking what are considered ‘normal’ amounts of both. 

 

I think the best thing would be to introduce anything new very slowly and for the most part, resist the urge to ‘fix’ whatever is happening. 

[Train28]

@eymen23 thank you for the reply! I don't think I knew that about Sudafed - that's an excellent point. I do think my CNS just reacts strongly to certain things. Most of us seem to have that issue during/after protracted withdrawal... And, like you, I've always had a bit of sensitivity to things anyway. 

 

You're so right about needing to let go of the idea that I can "fix" it!  I struggled with that during my Abilify withdrawal too, eventually realizing time and faith were my answers.  Even the supplements that really helped weren't sudden miracles or something. They took time.  

 

Oddly, I had no reactions *while* taking those things, just anxiety and such beginning immediately after 4-5 days of use - so it's frightening to think that virtually any medication could do this, with no warnings or signs I might react poorly until the course is over. So that's been a struggle too - accepting that it can happen out of the blue. Maybe it's a sign I should use medications for shorter durations and at weaker doses, idk. 😕

 

But again, I'm giving it to God.  There's too much I don't know, and as much as I wish I could reverse this/ fix myself, I know I can't.  

 

Thanks again

[Train28]

Update: 

 

Still in this "wave" at ...24 days, I believe.  I've had much better days, recently, and think it's the combination of 1) giving it to God and refreshing my mind of hopeful and healing scriptures, 2) cutting out all the supplements I started when this wave hit, just to give my nervous system a chance to do its thing without too many interruptions too fast.  

 

Also - for some reason this no-sugar-added Detox ginger smoothie at Tropical Smoothie?? I haven't been able to eat much, but those are easy to drink and seem to help a lot. Maybe it's the ginger acting as an anti-inflammatory.  Either way, I've gotten one almost every day for a week and some change 😂 

 

I got my vitamin D and B levels checked, still waiting on results.  Also waiting on a second urine culture since my last was negative but urinalysis still shows sign of infection, though the levels have declined since I've taken the d-mannose. The doctor at the walk-in clinic was very dismissive, but the blood-drawing guy (phlebotomist, I think is the word?) was great and seemed pretty knowledgeable about sensitivities. 

 

I saw a therapist yesterday, and while some things she says are a little out there for me - she wants to try reiki, for example, though admittedly I know very little about that - she was extremely reassuring. 

 

She believes I still have some PTSD from when my father died, but also now PTSD from my Abilify withdrawal.  When she said that, it was like a light bulb as to why this wave, while symptomatically better than my 2012-2014 ones, has been hitting me so hard emotionally.  It's because it took me right back there mentally... right back to that intense fear and loneliness, the utter confusion and anger over what had happened, and the distrust of doctors coupled with the ironic desperation for their help. 

 

I cried a lot. She reassured me that our brains heal - they're designed to. And she said hypersensitivity to Sudafed isn't unusual for anyone, let alone someone who's withdrawn from psych drugs - even she gets panic if she takes it enough.  So she believes Sudafed might have made me sensitive to the nitrofurantoin, which has made me sensitive to many other things right now - but that I will heal, because I've done it before.  

 

All that to say, I felt great after that.  It was a relief getting it all out and being listened to, and realizing more professionals understand this process and its long-term effects than they did when I first encountered protracted withdrawal. 

 

The past few days, as I've said, have been much better.  I'm still waking up early with that panic adrenaline feeling, now with chills requiring multiple blankets - but I can get back to sleep for a few hours if I bundle up and, for some reason, add another pillow so that I'm sitting up some. No idea why that works - I certainly can't fall asleep that way at night! It just helps after that early cortisol spike.  

 

I take my magnesium and sit in bed a while, reading scripture and researching on here... I'm trying to limit the latter, though, because it can quickly go from helpful to upsetting if I dwell too long. I get up to shower and get ready once my heart rate feels normal.   

 

By 11 am to noon, I feel better and go for a long drive with my mom and kids while my husband is at work. Being in the car calms me a lot, and that's been the case throughout this wave. I think it was like that when I was going through Abilify withdrawal too- I remember spending hours in Ikea or aimlessly driving with my baby girl some days, just to get out of the house. 

 

My mom and I get lunch; usually I get a detox smoothie and that's all I want, but sometimes I can later eat real food. Sticking to salmon, grilled chicken, vegetables, salads...healthy stuff without much carbs or sugar. Only water to drink, besides the smoothies and one night with chamomile tea. 

 

Around 4-5 pm, I tend to get a surge of symptoms: depression, agitation, anxiety, restlessness, ruminations - in some combination. This is when we'll go home and I realize I'm very tired, but can't sleep.  I go outside and sit in the sun reading until it passes or lifts an hour or so later. Then I go for a walk with my kids and our family sits outside while they play. 

 

Around 6 or 7pm, I feel much better again - lately it's been like 99 percent myself, with the only "symptom" feeling more like fear that the other symptoms will return.  I watch funny stuff with my family, eat dinner, put my kids to bed, take magnesium, then stay up on Pinterest or watching tv until about 1am so that I'm exhausted enough to fall asleep fast.  Then I wake up anywhere from 6 am to 8am, and repeat. 

 

This is about how I felt 2 weeks ago during what I guess was a sort of window, so I am scared of the wave worsening again... But I'm grateful to have these good days, too. And I'm very grateful for the evening windows, so that I can enjoy my children's bedtime routine.  It's about the only part of their routine, besides my oldest's school day, that has remained unchanged throughout this wave.  But it's wonderful.  

 

I've got another therapy appointment Friday, and hope my lab results can shed more light on things - but no matter what they say, I know this is something with heightened sensitivity overall and that I'll have to be aware of medications doing that to me from now on. 

 

As an aside, my initial sensitivities after Abilify did go away. Back then I couldn't tolerate any cold medicine, many supplements, coffee, alcohol... by about year 3, all of that had gone away. But I did have an issue when I smoked a lot of cigarettes, sometimes with energy drinks, after getting drunk, etc. Even those reactions eventually lessened.  

 

Hell, I was even able to take Sudafed - but that was an occasional dose, versus the triggering event where it was constant dosing for 4 days. 

 

So all that shows that, yes, I'm overly sensitive to some things - but usually in excessive amounts and/or multi-day use. Hopefully I'll get to a point in recovery where even those aspects can't trigger things... not that I'll ever test it, barring serious medical need like surgery.  

 

Hope and prayers for everyone ❤

[Train28]

Thought I would post an update - I've been doing much better the last few weeks! I've only had one day where I woke up anxious, and a handful of random "twinges" where the panic/doom/sadness would hit out of nowhere for a few minutes, then pass just as quickly. Almost every day, I've felt totally normal and don't even think about this stuff. 

 

I think the amino blend I was taking was making things worse - can't say for sure, and I'm not sure why this brand would affect me negatively when the previous one i tried in my Abilify recovery helped (or at least had no negative effects). Maybe there was something else in this new one I can't tolerate.  All I know is that stopping it helped, so into the garbage it went

 

I'm now working off the theory that my antibiotic in July was the main trigger for the return of these symptoms, perhaps "primed" by the Sudafed incident and/or previous rounds of antibiotics - 2018-2019 was the most antibiotics I've taken since childhood, and I'm wondering if it screwed up my microbiome.  So now I'm slowly and gradually changing my diet to improve my gut health, and it seems to be helping a ton. 

 

I've reduced sugar and carbs, added small amounts of new things like kombucha and sourdough, started cooking with veggies and bone broth and olive oil...I now eat salmon once or twice a week, too. Basically just making my diet healthier and walking more. No caffeine or alcohol still (going on 6 weeks). I don't miss wine, but I do miss coffee - but honestly, my energy is so much more stable now, I might keep living the decaf life a while regardless

Still seeing my therapist; she's been great to talk to, and I like her approach of treating my anxiety - she thinks the gut-brain connection is a good lead to follow, and is teaching me how to not feed into the anxiety/sadness when it hits so that I don't spiral and make it worse. 

 

Above all else, I've benefited from daily reminders to myself that this is God's battle. I can't fix whatever has happened, but He can and will (and is!) - so I'm letting go of that need to control everything, praying for guidance on what if anything I should be doing to get things back on track. Control is a big struggle for me - I always feel I should dive in and fix things right away. Working on that via prayer and therapy is new to me, but I'm enjoying the challenge

 

I'll post another update in a few weeks if I can remember. Praying for everyone here ❤

[Aeroman]

Hi Train!  I hope you are doing well!  Hang in there, take it one day at a time.

[Train28]

Hi, @Aeroman!  Wow, is it super weird if I say I kind of feel like I'm talking to a celebrity? 😂 I read so many of your posts on PP and here - there were days in both my Abilify recovery and this recent incident where I just kept telling myself, "Aeroman's okay now, so you're going to be okay."  I can't thank you enough for your posts - they got me through so many dark times.  Your avatar being Superman is extremely appropriate! 

I'm doing great, thank you for asking : ) You reminded me that it's been a while since I updated this thread, actually - so double thank-you! 

I still haven't had any anxiety, depression, insomnia, or the other symptoms since mid- to late-October.  A couple twinges, on days I eat complete junk  (which seems to support the whole antibiotic/microbiome theory I've been working under), but they're mild and last literal seconds.  I think it's happened maybe seven times total, and I forget about them immediately. 😊

I'm back on caffeine, but only a cup or so of coffee and very occasional soda.  A couple glasses of wine once a week has been fine, too.  But I'm still focusing on a probiotic-rich diet - and staying far away from antibiotics and other medications. 

 

I don't trust anything, now.  Not with the same blind faith I did pre-Abilify, and that I was lapsing back into post-recovery.  I know eventually I might need medication or antibiotics again, and there's a very real possibility I'll experience my old symptoms...but now I know to let God fight the battle, listen to what my body's telling me, and resist the urge to "fix" things (since some of the supplements I was taking seemed to worsen things dramatically, but I had no idea until I stopped them). Add things in slowly, and - like Aeroman said - take it one day at a time. 

I pray for everyone on this site all the time.  Thank you all for your support and stories  ❤️

[Armorall]

So great that you came back fully from the cold medicine/ antibiotics! I hope you'll write a success story to add to the collection, it sounds like you are completely healed! It would help everyone out immensely if you did that! 

[Glosmom]

Thanks for sharing, Train!  So happy for you.  All successful survivors of antipsychotics deserve celebrity status!!   

[Aeroman]

12 hours ago, Train28 said:

Hi, @Aeroman!  Wow, is it super weird if I say I kind of feel like I'm talking to a celebrity? 😂 I read so many of your posts on PP and here - there were days in both my Abilify recovery and this recent incident where I just kept telling myself, "Aeroman's okay now, so you're going to be okay."  I can't thank you enough for your posts - they got me through so many dark times.  Your avatar being Superman is extremely appropriate! 

I'm doing great, thank you for asking : ) You reminded me that it's been a while since I updated this thread, actually - so double thank-you! 

I still haven't had any anxiety, depression, insomnia, or the other symptoms since mid- to late-October.  A couple twinges, on days I eat complete junk  (which seems to support the whole antibiotic/microbiome theory I've been working under), but they're mild and last literal seconds.  I think it's happened maybe seven times total, and I forget about them immediately. 😊

I'm back on caffeine, but only a cup or so of coffee and very occasional soda.  A couple glasses of wine once a week has been fine, too.  But I'm still focusing on a probiotic-rich diet - and staying far away from antibiotics and other medications. 

 

I don't trust anything, now.  Not with the same blind faith I did pre-Abilify, and that I was lapsing back into post-recovery.  I know eventually I might need medication or antibiotics again, and there's a very real possibility I'll experience my old symptoms...but now I know to let God fight the battle, listen to what my body's telling me, and resist the urge to "fix" things (since some of the supplements I was taking seemed to worsen things dramatically, but I had no idea until I stopped them). Add things in slowly, and - like Aeroman said - take it one day at a time. 

I pray for everyone on this site all the time.  Thank you all for your support and stories  ❤️

HAHA!  It's all good

 

Yep, I posted so much on PP, drugs dot com, and visited a lot of anxiety websites/forums.  I was so freaked out with the w/d stuff from Lexapro and Cipro.  I too had three individuals that were already recovered that I messaged a lot, asking for reassurance.  Will I get better?  When will this end?  Maybe I am one of those that won't recover, etc.  Glad you are doing well.  Yep, I too get those twinges maybe 1 or 2x per year and even then, it's nothing.  I basically tell them to scram (keeping it PG) and go about my day.  Same here, I am back on caffeine here and there. While in w/d, nooooo way, didn't touch it.  Have a good one.

[Altostrata]

On 11/2/2019 at 11:01 PM, Train28 said:

I think the amino blend I was taking was making things worse - can't say for sure, and I'm not sure why this brand would affect me negatively when the previous one i tried in my Abilify recovery helped (or at least had no negative effects). Maybe there was something else in this new one I can't tolerate.  All I know is that stopping it helped, so into the garbage it went

 

I'm now working off the theory that my antibiotic in July was the main trigger for the return of these symptoms, perhaps "primed" by the Sudafed incident and/or previous rounds of antibiotics - 2018-2019 was the most antibiotics I've taken since childhood, and I'm wondering if it screwed up my microbiome.  So now I'm slowly and gradually changing my diet to improve my gut health, and it seems to be helping a ton. 

 

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[Train28]

Hi, everyone! 

I got an email that made me realize it had been over a year since I posted (on this thread, at least), so I wanted to come back and give an update.

Over the last year, I've had just a few episodes of anxiety, and all were "traceable" to specific sources.  One was a mild week in September when I realized I should start using my DayLight Therapy lamp again, and symptoms cleared up fast. 

Another (summertime) was because I took, of all things, Azo!  It makes me wonder if past episodes that seemed to have no source really did.  If Azo can cause it, who knows what else I've taken that did the same thing. 🤷‍♀️  That one seemed hellish at times but, in retrospect, was mild to moderate.  I was still able to work and have fun with my kids, and that's always the best indicator of how good/bad an episode is. 

Other episodes were so mild I can't even remember them now.  I'd still have clear symptoms (crying, that "doom" feeling, racing heart), but they were pretty easily ignored or went away midday. 

Interestingly, even though they've gotten less severe, the episodes still follow a sort of pattern.  They usually last a week; the panic is worse in the mornings.  I can tell what kind of day the next one will be based on how many "jolts" of panic I feel as I fall asleep. 

Inevitably, there comes a night during the episode when I sleep like a baby.  I wake up with a much milder panic that dissipates quickly, then I go about my day.  This repeats, each day being milder than the one before, until I'm back to normal. 

I've come to the conclusion that I'm just hypersensitive to certain things, and there's little to no rhyme or reason as to what will trigger those episodes.  For every medication that messes me up, there are others that do just fine. 

Drawing this conclusion was like a very slow light-bulb moment - I realized I've had adverse reactions to a lot of random medications throughout my entire life, or stronger-than-average results.  I could get by on children's doses of cold meds, while adult doses made me feel loopy or drunk.  I got hyper-emotional on low-dose birth control brands that my friends swore were the best they'd ever tried.  Hangovers always came with a mopey, depressed feeling.  I can even recall feeling out of control in sixth grade history class after taking Midol - this feeling like I wanted to crawl out of my skin, I was so hyper and uncomfortably energetic. 

 

I still believe the antibiotic messed up my microbiome, too, however.  In fact, I'm thinking a sensitive microbiome might explain all the other reactions.  Maybe it even played a big role in my Abilify PAWS; who knows? 

Anyway, long story short - my life has greatly improved, and I continue to be vigilant about what I do or don't put in my system. For anyone interested in what that entails:

• I drink coffee almost daily, but brewed at half-strength
• Soda and energy drinks only occasionally
• I still vape, but use a low nicotine
• I avoid all medications, even OTC, whenever possible 
• Natural supplements and remedies are preferred, but still used with caution
• Once I've had anxiety in response to something, I don't take it anymore. 
• I've used d-mannose to get rid of several UTIs this year and also take it preventively; I never want antibiotics again unless it's life-saving.
• I rarely drink alcohol (though I've found 1-3 glasses of wine goes over perfectly well, with no hangover).
• 1/2 bottle of kombucha every day/most days (I seem to tolerate it better than probiotic pills) 
• Mostly healthy diet; lots of vegetables and spinach-based smoothies, though I also eat more junk than I should 😬
• I take 200-400mg of magnesium every day
• Drink plenty of water and try to get enough sleep
• I use my therapy lamp all fall and winter, 25 minutes a day
• My job is very sedentary, so I try to exercise 3-7x a week, even if it's just a quick walk outside. 
• I don't take CBD anymore; it made me too sleepy. So I highly recommend it for insomnia 😂

2020 was an absolutely horrible year in so many ways, so I count my blessings that the episodes/twinges I had were so few and mild. I still wish I wasn't hypersensitive to things, of course.  It's frustrating to see old symptoms pop back up, even when they're mild, and it's annoying that I can't "be like everyone else" - people who can take any old med and be fine.

But I'm so glad I know this about myself now. If not for my experiences and the stories on this site and PP, I might be in that revolving door of rX psych drugs, each one an attempt to fix unknown damage the last one caused.  And where I am now, even though it was the much harder road to take, is much, much better.

My prayers go out to everyone on here still struggling. I pray 2021 brings you immense healing, happiness, and peace ❤️ ❤️ ❤️