The Windows and Waves Pattern of Stabilization

[peaceandlove]

On 12/29/2023 at 2:19 AM, TheSaxo said:

Anyone crashed from antibiotics? I was having a mini window at the beginning of December after months of stagnating recovery, but due to an aggressive foot infection I had to take different antibiotics via pills (augmentin and azhytromycin) and once via injection at the ER (ceftriaxone)..

 

This crashed me a lot, I feel like at the beginning of my withdrawal, like 10 months of progress deleted, I feel so hopeless...

i took antibiotics like 3 months ago & it definitely caused a huge wave setback. You’re not alone @TheSaxo

[LouiseL]

On 12/29/2023 at 10:19 AM, TheSaxo said:

Anyone crashed from antibiotics? I was having a mini window at the beginning of December after months of stagnating recovery, but due to an aggressive foot infection I had to take different antibiotics via pills (augmentin and azhytromycin) and once via injection at the ER (ceftriaxone)..

 

This crashed me a lot, I feel like at the beginning of my withdrawal, like 10 months of progress deleted, I feel so hopeless...

Hi @TheSaxo ♥️
 

I’m so sorry to hear that 😕 I’m in a similar situation I’m afraid. But, I’m sure 10 months of progress isn’t lost entirely (/at all!) and that this is a “wave”. Whichever underlying mechanisms that have already slowly recovered in your body, I really don’t think they have just 100% become undone  That’s my understanding of all of this anyway, from having read a lot about antidepressant withdrawal recovery. But I understand you feel terrible ♥️😔😔😔 I dont know if this helps but yeah, sigh, you’re not alone. ♥️
 

I’ve had a lung infection and ended up needing antibiotics a month ago. I took a Malcide class (I think they are called?). First days were not so bad but the longer I took them, ugh 😑— it was like instant hangover from

hell / concussion and I also suddenly have a lot of ehm tinnitus and ehm sleep problem (ok had tinnitus and sleep problems before but its gotten worse). It’s both absolutely crap and also “interesting” to hear that someone else who’s going through withdrawal is also reacting strongly after antibiotics. 
 

Anyway. I just wanted to… yeah let you know you're not alone. ♥️😊 

 

All the best

Louise

 

 

[Rhernan]

I came off Mirtazepine almost 7 months ago and in December I took 3 doses of a migraine medication (ubrevly) and have suffered a massive setback.  I feel like I’m back in total acute WD and it’s horrendous.  My main issues are total insomnia (literally 1-3 hrs of broken sleep) with weird things happening all night to my brain and body.  Hoping I come out of this wave soon as it’s really wreaking havoc on not only myself, but my poor kids and husband.

 

I have never experienced this amount of insomnia.  And it’s not just the inability to sleep, it’s whenever I try to fall asleep I get these rushes all over my body onto my brain that happen over and over and last sometimes all night. I also get severely dizzy, nauseated, and dripping in sweat!  It’s like my body cannot transition to sleep anymore…

[KenA]

2 hours ago, Rhernan said:

I came off Mirtazepine almost 7 months ago and in December I took 3 doses of a migraine medication (ubrevly) and have suffered a massive setback.  I feel like I’m back in total acute WD and it’s horrendous.  My main issues are total insomnia (literally 1-3 hrs of broken sleep) with weird things happening all night to my brain and body.  Hoping I come out of this wave soon as it’s really wreaking havoc on not only myself, but my poor kids and husband.

 

I have never experienced this amount of insomnia.  And it’s not just the inability to sleep, it’s whenever I try to fall asleep I get these rushes all over my body onto my brain that happen over and over and last sometimes all night. I also get severely dizzy, nauseated, and dripping in sweat!  It’s like my body cannot transition to sleep anymore…

Hi @Rhernan. Sounds to me what you are describing are cortisol spikes. I used to get them all the time when I was in WD. They are scary to say the least, but its because you are healing and your hormones and CNS are out of balance and readjusting. They will go away with time. Mine went away and have never returned since. Hang in there, you will be ok.

 

Ken

[Rhernan]

On 2/8/2024 at 10:58 AM, KenA said:

Hi @Rhernan. Sounds to me what you are describing are cortisol spikes. I used to get them all the time when I was in WD. They are scary to say the least, but its because you are healing and your hormones and CNS are out of balance and readjusting. They will go away with time. Mine went away and have never returned since. Hang in there, you will be ok.

 

Ken

Yes, they are defiantly either adrenaline or cortisol for sure, but it’s weird because they happen, at times, all night long when my brain and body are trying to transition to a deep sleep.  They rush through me and I awake with a jerk and gasp!  It’s so strange.  
 

Of course then my mind goes to doom and gloom and tells me I have brain damage and won’t heal…I usually have to calm myself for 45 min and then it’s rinse and repeat.

 

I know we are all different, but how long did it take for your sleep to become even a bit better?  It’s been 2 months of this for me and I can tell I’m in the acute withdrawal phase.

 

Also, are there members whose acute stage didn’t start till a few months after they came off?  I defiantly was having issues the moment I came off, but they increased over each month and by month 5/6 is where acute withdrawal has set in.

 

Thanks for replying!

[KenA]

I would also experience the jolts as I was falling asleep. it was the worst!! Just starting to drift off to sleep, then bam!! Like someone had just shaken and screamed at me. It was sooooo terrible!! The worst of it was probably the first 6-7 months or so. By like month 8 or 9 it started to calm. By about 12 months, the cortisol spike were mostly gone when falling asleep. But I still got them every single morning upon waking for probably another 4-5 months. So, maybe a year and a half before they went away. Slowly by surely wins the race.

[Belajazi]

 

55 minutes ago, KenA said:

I would also experience the jolts as I was falling asleep. it was the worst!! Just starting to drift off to sleep, then bam!! Like someone had just shaken and screamed at me. It was sooooo terrible!! The worst of it was probably the first 6-7 months or so. By like month 8 or 9 it started to calm. By about 12 months, the cortisol spike were mostly gone when falling asleep. But I still got them every single morning upon waking for probably another 4-5 months. So, maybe a year and a half before they went away. Slowly by surely wins the race.

@kenA I also wake up by brutal cortisol spike every morning from previous last month.It will take a year to complete my taper i don't know how long i have to bear it.

[Belajazi]

@LostInCanada @KenA @Emonda 10 days ago i had unbearable muscle and body ache which last for a week then went away but now body ache again start

is it normal in withdrawal??  What should i take for body ache???  

I don't know it is due to kolonopin or part or withdrawal and kindling 

Before Skiping dose process i Had no body and muscle ache 

[LostInCanada]

@Belajazi body aches and flu like symptoms are common in withdrawal. 

This link will take you to a list of common symptoms:

 

I do not take any drugs for pain because of possible reactions. Can you take a warm bath or use ice/heat? I also will self massage. Some on here use Tylenol and aspirin. 

[Belajazi]

7 minutes ago, LostInCanada said:

@Belajazi body aches and flu like symptoms are common in withdrawal. 

This link will take you to a list of common symptoms:

 

I do not take any drugs for pain because of possible reactions. Can you take a warm bath or use ice/heat? I also will self massage. Some on here use Tylenol and aspirin. 

@LostInCanadaThanks alot

I will aslo prefer not to take any painkiller . No i am not using ice/heat but now i will definitely try 

[TheSaxo]

On 2/8/2024 at 2:57 AM, peaceandlove said:

i took antibiotics like 3 months ago & it definitely caused a huge wave setback. You’re not alone @TheSaxo

 

On 2/8/2024 at 12:57 PM, LouiseL said:

Hi @TheSaxo ♥️
 

I’m so sorry to hear that 😕 I’m in a similar situation I’m afraid. But, I’m sure 10 months of progress isn’t lost entirely (/at all!) and that this is a “wave”. Whichever underlying mechanisms that have already slowly recovered in your body, I really don’t think they have just 100% become undone  That’s my understanding of all of this anyway, from having read a lot about antidepressant withdrawal recovery. But I understand you feel terrible ♥️😔😔😔 I dont know if this helps but yeah, sigh, you’re not alone. ♥️
 

I’ve had a lung infection and ended up needing antibiotics a month ago. I took a Malcide class (I think they are called?). First days were not so bad but the longer I took them, ugh 😑— it was like instant hangover from

hell / concussion and I also suddenly have a lot of ehm tinnitus and ehm sleep problem (ok had tinnitus and sleep problems before but its gotten worse). It’s both absolutely crap and also “interesting” to hear that someone else who’s going through withdrawal is also reacting strongly after antibiotics. 
 

Anyway. I just wanted to… yeah let you know you're not alone. ♥️😊 

 

All the best

Louise

 

 

Luckily I recovered from the setback from the antibiotic in around 1 month!

And currently in a partial window, problably the "best" since the withdrawal started almost 1 year ago. 

[6Eggs]

I thought I might add my bit.  Although I have waves and windows, I didn't feel much of a gradual overall improvement except during the actual tapering process.  And for me, WD effects are extremely delayed, min 3 months for them to manifest after "successfully" tapering the quitting.

For me personally, I have only gone down hill from nearly a year ago , and as bad as I was 2 years ago, or about 5-6 months after when I first got into this mess.

As a side observation, it also took years of the drug use to manifest the side effects in the first place and several months to over a year to start "working". So I speculate that my CNS is extremely slow to adapt, both in positive and negative ways and would help explain the delayed side effects and then delayed WD. Originally I thought it was the first drugs super long half life and it's ridiculously strong affinity, but the 2nd drug had an even longer delayed WD this time 4 months out, despite a half life of 2 hours and clearance from the body within 24 hours and quite weak affinity.

I feel I still haven't plateaued in the acute delayed WD yet and still haven't started the upward trend. Really sucks! and to make me feel more bummed about it is my blood works are fantastic!, better than my early 20s and I'm closing up the gap to 40 now. Yet my CNS is completely out of whack and seems like it hasn't finishing hitting rock bottom yet. Very frustrating the least to say.

[missy27]

I find that i come to this thread the most, im so thankful for it. I have been completely off Effexsor since mid October and it is now beginning of March. I find each wave is different. Some are more manageable then others. I also find if i endure alot of stress the wave will hit a couple days laters. Right now im in a bad one. It feels like im right back in that acute phase of withdraw. The funny thing is that i was think i was in a depression wave already and then this horrible, anxiety, dread and panic hit. Its worse in the morning and goes until mid day. Its so paralyzing at moments. You try to push through but not push to hard. The balance is sometimes hard to find. I think i cried 10 times today. Has anyone ever wondered if they have PTSD from the acute WD?

[6Eggs]

17 minutes ago, missy27 said:

I find that i come to this thread the most, im so thankful for it. I have been completely off Effexsor since mid October and it is now beginning of March. I find each wave is different. Some are more manageable then others. I also find if i endure alot of stress the wave will hit a couple days laters. Right now im in a bad one. It feels like im right back in that acute phase of withdraw. The funny thing is that i was think i was in a depression wave already and then this horrible, anxiety, dread and panic hit. Its worse in the morning and goes until mid day. Its so paralyzing at moments. You try to push through but not push to hard. The balance is sometimes hard to find. I think i cried 10 times today. Has anyone ever wondered if they have PTSD from the acute WD?

 

100% PTSD. I have had absolutely horrific experiences with most psych drugs and the people prescribing them.

I'm so cautious of anything that can potentially cross the BBB that I use PPE for things I never used to, but probably should have as I know now that I have hyper sensitivities I never had before and most of them have only become worse. I can no longer take panadol which never gave me an ouch of trouble my whole life, throughout the taper and WD, only once I got off the last drug after carefully tapering that one from the beginning, so best case scenario, soon as I finally got off, can't take panadol any more and I am 90% sure a micro dose of sildenafil triggers severe crashes now too (I have PSSD pretty bad and they drugs weren't even SSRIs in the first place, go figure!).

So scared of stuff that can cross the BBB and I know many household substances that can, have set off crashes and acute neurological symptoms immediately after exposure. There is a true sense of PTSD about the whole health thing.

[missy27]

22 minutes ago, 6Eggs said:

 

100% PTSD. I have had absolutely horrific experiences with most psych drugs and the people prescribing them.

I'm so cautious of anything that can potentially cross the BBB that I use PPE for things I never used to, but probably should have as I know now that I have hyper sensitivities I never had before and most of them have only become worse. I can no longer take panadol which never gave me an ouch of trouble my whole life, throughout the taper and WD, only once I got off the last drug after carefully tapering that one from the beginning, so best case scenario, soon as I finally got off, can't take panadol any more and I am 90% sure a micro dose of sildenafil triggers severe crashes now too (I have PSSD pretty bad and they drugs weren't even SSRIs in the first place, go figure!).

So scared of stuff that can cross the BBB and I know many household substances that can, have set off crashes and acute neurological symptoms immediately after exposure. There is a true sense of PTSD about the whole health thing.

Thank you so much for your input. Im so sorry your having such a horrible time with this as well. The hypersensitivity you mentioned is awful. Im finding i have to even occasional glass of wine because my system cant take it. I love coffee and now im trying to quit because ive gotten sensitive to that too. I know those are healthy improvements but having to cut small enjoyments from a joyless experience feels cruel. 

[6Eggs]

I barely drank before either way, but I stopped entirely for the same reason nearly 2 years now, 1/4 glass of light beer knocks me from my socks and I suffer for days after. I just feel like I've had laughing gas or something and my body aches like a severe flu and my mood initially for the first 5-10 min feels like described (laughing gas) and then my mood crashes straight after and I close down and feel depressed and that effect lasts days.

Oddly, I have always reacted like this with alcohol and never liked it, the aching of the body has always been a thing for me.

During the "treatment" with Rexulti, I actually started to socially enjoy a drink or two and sometimes had a beer to wind down on my own. First time drinking had a pleasurable effect and this is when the Rexulti was helping for over a year before the horrific side effects suddenly came in and eventually ended me here with the WD.

I found these effects unusual and interesting. 

Thankfully, coffee has no negative effect that I have noticed, I had cut back to one, max two a day and none after noon, so this probably helped. I used to drink 6-8 coffees a day before all of this, only because I hate tap water and coffee was a way for me to get fluids in.  I drink soda stream, just the water now haha.  Not something a self diagnosed ASD person would typically do, but tap water sets my gag reflex into a fit.

[mariamisery]

Desperately trying to understand waves. Are waves just feeling horrible. Are they more emotional than physical or a little bit of both.  Those going through can you please help

[missy27]

I find its both physical and emotional. It seems like every wave is different. This last one i just came out of i had horrible cortisol mornings (felt like electricity running through my body and i couldnt sleep) started at 3 am went till about 3 pm. Now it seems like it calmed down and i can sleep a bit better. That went on for about a month. There are waves where i felt like i had a full body flu. One wave was pure depression and dread. From what i understand its a period of time where your brain is trying to find balance in the healing process.

[RayGirl]

Hello. I'm wondering if the windows and waves patterns happen also when you've always been doing strictly hyperbolic tapering, (as opposed when it appears when someone has a fast taper and enters protracted withdrawal).

I'm on a very low dose right now and going down by 2.5% of Receptor Occupancy of venlafaxine every 4-6 weeks (I calculated 10% of the current dose for a long time and then after consultation with Dr H I started calculating by Receptor Occupancy), I will probably end my taper, hopefully, in about a year. I already know my withdrawal taper pattern from each taper (the acute withdrawals I get on each taper that resolve after a week or so), but I've also been noticing that there are sometimes, after that acute phase resolves, that I feel great, full of life, and other times I get this very low feeling, as a deep sadness or like a feeling of alertness as if I was being threatened, and I can't do as much as the other times because I feel slightly paralyzed.

If I look back in time it's like cycles, sometimes my baseline is the perfect full of life feeling and sometimes my baseline is the either alertness or sad mood, and any of those baselines can last for weeks. For example right now I'm going through one of those low mood/anxious alert periods and I get a bit worried because I can't fully find a singular cause, but then I remembered this information and I wondered if this could be it.

 

Is that what the waves and windows pattern is?

 

 

[6Eggs]

3 hours ago, RayGirl said:

Hello. I'm wondering if the windows and waves patterns happen also when you've always been doing strictly hyperbolic tapering, (as opposed when it appears when someone has a fast taper and enters protracted withdrawal).

I'm on a very low dose right now and going down by 2.5% of Receptor Occupancy of venlafaxine every 4-6 weeks (I calculated 10% of the current dose for a long time and then after consultation with Dr H I started calculating by Receptor Occupancy), I will probably end my taper, hopefully, in about a year. I already know my withdrawal taper pattern from each taper (the acute withdrawals I get on each taper that resolve after a week or so), but I've also been noticing that there are sometimes, after that acute phase resolves, that I feel great, full of life, and other times I get this very low feeling, as a deep sadness or like a feeling of alertness as if I was being threatened, and I can't do as much as the other times because I feel slightly paralyzed.

If I look back in time it's like cycles, sometimes my baseline is the perfect full of life feeling and sometimes my baseline is the either alertness or sad mood, and any of those baselines can last for weeks. For example right now I'm going through one of those low mood/anxious alert periods and I get a bit worried because I can't fully find a singular cause, but then I remembered this information and I wondered if this could be it.

 

Is that what the waves and windows pattern is?

 

 

Yes pretty much, I had waves and windows during the entire taper period, but I also was in protracted WD before I reinstated and started the taper properly again. Once my WD were triggered by the first failed attempt to taper and quit (to quickly, over 8 weeks), that was it, the WD symptoms never went away despite reinstating and hyperbolically tapering over nearly 2 years.  But as I reinstated and tapered, the windows and waves were there either way, not just there once I was off the drugs.

The funny thing is, it felt my best at the end of the taper and saw continuously improvement during the whole taper, at least with the first med and most of the 2nd med.  Actually successfully tapering off and finally quitting, the windows waves regressed back to similar levels at the first attempt to quit but it took months for this regression to happen.  So the whole windows waves progression is not something everyone gets, for me it was a lot of false hope and all over the shop with no clear overall trend.

Even though, now I have been about 10 months off the first drug and now over 4 months off the last one, I feel far worse than I was say 18 months ago and both drugs there was multi month delays to the onset of the worse WD symptoms. And each of the 3 times I quit one or the other, it was many months of decent relief from symptoms followed by a sudden and abrupt and severe delayed WD.

So even though I am and have been drug free for a decent amount of time, I don't have any clue what it will look like going forward, have I hit rock bottom yet? Am I slowly improving yet? Is it going to be more stable now or more erratic going forward?  I just don't know, I feel I am still bottoming out and don't expect to feel any better for some time yet. Everyone is different though.

[RayGirl]

11 hours ago, 6Eggs said:

Yes pretty much, I had waves and windows during the entire taper period, but I also was in protracted WD before I reinstated and started the taper properly again. Once my WD were triggered by the first failed attempt to taper and quit (to quickly, over 8 weeks), that was it, the WD symptoms never went away despite reinstating and hyperbolically tapering over nearly 2 years.  But as I reinstated and tapered, the windows and waves were there either way, not just there once I was off the drugs.

The funny thing is, it felt my best at the end of the taper and saw continuously improvement during the whole taper, at least with the first med and most of the 2nd med.  Actually successfully tapering off and finally quitting, the windows waves regressed back to similar levels at the first attempt to quit but it took months for this regression to happen.  So the whole windows waves progression is not something everyone gets, for me it was a lot of false hope and all over the shop with no clear overall trend.

Even though, now I have been about 10 months off the first drug and now over 4 months off the last one, I feel far worse than I was say 18 months ago and both drugs there was multi month delays to the onset of the worse WD symptoms. And each of the 3 times I quit one or the other, it was many months of decent relief from symptoms followed by a sudden and abrupt and severe delayed WD.

So even though I am and have been drug free for a decent amount of time, I don't have any clue what it will look like going forward, have I hit rock bottom yet? Am I slowly improving yet? Is it going to be more stable now or more erratic going forward?  I just don't know, I feel I am still bottoming out and don't expect to feel any better for some time yet. Everyone is different though.

 

I'm so sorry to hear about your distress. From what I read around here the waves and windows are common after a fast taper or once you enter protracted withdrawal. Maybe your waves after quitting was due to a baseline that was affected from that protracted withdrawal?

That was not my case, I didn't quit venlafaxine cold turkey or had to reinstate or anything, I always did either exponential or hyperbolic tapering. (In 2018 I switched from Pristiq to Effexor in order to taper, that was my only jump. And before 2015 I did have a couple of years that a psych put me on and off different drugs but it was already a long time ago and I don't relate what's currently happening to me with that).

But I've been noticing this cycle of several weeks going great and several weeks with the anxiety and sadness baseline, and I was wondering if there can be another explanation or my take on life or circumnstances.

 

And your reply gave me another question: does the waves and windows pattern affect those who have only done the slow taper even after they are off?

 

Thanks!

[missy27]

1 hour ago, RayGirl said:

 

I'm so sorry to hear about your distress. From what I read around here the waves and windows are common after a fast taper or once you enter protracted withdrawal. Maybe your waves after quitting was due to a baseline that was affected from that protracted withdrawal?

That was not my case, I didn't quit venlafaxine cold turkey or had to reinstate or anything, I always did either exponential or hyperbolic tapering. (In 2018 I switched from Pristiq to Effexor in order to taper, that was my only jump. And before 2015 I did have a couple of years that a psych put me on and off different drugs but it was already a long time ago and I don't relate what's currently happening to me with that).

But I've been noticing this cycle of several weeks going great and several weeks with the anxiety and sadness baseline, and I was wondering if there can be another explanation or my take on life or circumnstances.

 

And your reply gave me another question: does the waves and windows pattern affect those who have only done the slow taper even after they are off?

 

Thanks!

I was on effexsor for a long time. I didnt know about tappering and the complexity of WD. I only took a year to tapper and did it on my own with no clue what to do.  When i finally stopped it i went into a horrible acute withdraw a month after i stopped. I ended up going back on it to stableize me, the doctor yo-yo me on the dosage for a month and i ended up with serotonin syndrom and was addmitted in the hospital. It was then i was told i HAD to get off effexsor. So the next day i stopped. That was october 23 of this year, since then ive had crazy waves and few windows. They waves are made up of horrible insomnia, awful depression, fogging, fear of leaving the house and so on.  It is getting better but its slow. I am so greatful for this site because when i get really bad and loose hope i come here and read as much as i can and it sets my brain straight. If i could do it again i would definitely tapper longer and with help. Sounds like you are doing a great job with it.

[Onmyway]

@RayGirl this may be an indication that you are tapering too  fast - your nervous system is struggling with that 2.5% occupancy reduction. Consider slowing down. 

[John]

I have to ask; I understand about hyperbolic tapering, but how do you know the percentage of occupancy?  

[6Eggs]

6 hours ago, RayGirl said:

 

I'm so sorry to hear about your distress. From what I read around here the waves and windows are common after a fast taper or once you enter protracted withdrawal. Maybe your waves after quitting was due to a baseline that was affected from that protracted withdrawal?

That was not my case, I didn't quit venlafaxine cold turkey or had to reinstate or anything, I always did either exponential or hyperbolic tapering. (In 2018 I switched from Pristiq to Effexor in order to taper, that was my only jump. And before 2015 I did have a couple of years that a psych put me on and off different drugs but it was already a long time ago and I don't relate what's currently happening to me with that).

But I've been noticing this cycle of several weeks going great and several weeks with the anxiety and sadness baseline, and I was wondering if there can be another explanation or my take on life or circumnstances.

 

And your reply gave me another question: does the waves and windows pattern affect those who have only done the slow taper even after they are off?

 

Thanks!

I'm assuming you mean baseline as it how I normally was before the meds? If so, not at all, all the symptoms are completely foreign to me and 90% of them are physical/neurological with about 10% of the time psychiatric symptoms, even those are new to me, including true feeling of depression.

I was misdiagnosed multiple times with different things, but I was having very bad work burnout that manifested atypical to depression and was mostly presenting as muscular weakness, sexual dysfunction (very severe, I was normally hypersexual at basline) and overwhelmingly extreme fatigue (sleeping days at a time) but I never felt truly depressed or even suicidal, actually the later I never understood how anyone could become suicidal. And after having WDs, the self harm ideas became something I experienced for the first time in my life, that's how I knew WD and what these meds have done to me are not at all related to my original condition. In fact, I don't feel any of what was the original illness and haven't for years except for the intermittent muscle tenderness and tightness around my shoulder blades, but apparently this is a common stress respond, my partner gets exactly the same symptom as of late due to her going though burnout herself late last year and still in the recovery process as well as long covid on top of it all.

At lot of my pre drug issues and some of them I still struggle with, not at all related to meds or WD is I am likely on the ASD and I am looking for an adult diagnosis in the near future.

Also, a bit of an observation, this is had been true for all these meds I have become dependant on and also stuff like coffee.  Once WD is triggered, reinstating right away doesn't and never will stop my WD.

If I had lots of coffee for a long time and didn't have my regular morning one, within a few hours the most horrific caffeine WD would trigger, severe throbbing headache that even pain killers wouldn't tame. I tried to have a coffee ASAP to make the WD go away, well it did absolutely zero in helping, so once it happens there is no stopping it, reinstating or not.  My severe headaches despite trying to go back to the normal routine would continue for the entire duration of the WD, So with caffeine WD, it was best to just stay CT once it happened and ride it out, usually took about a week every time this happened and it was usually by accident. Trying to continue drinking coffee during this caffeine WD usually made me feel worse, so I just learned that if I accidentally forgot to have it and the WD kicked in, I just stayed off until the symptoms cleared after a week.

This seemed to be the same case with the meds too, once WD were triggered, re-instating. tapering etc... I personally think it didn't help that much and in hind sight may have prolonged the WD but maybe at a lesser intensity and CT and riding through the worse of it could have been the better thing in my case, but and a BIG but, this is not typical from what I have read on this forum and other's experiences and the general guidelines, so I would not recommend just CT.

And to add to that, even my symptoms are every atypical.  There is no one on here that had the presentation and patters of symptoms I had, yes individual symptoms I have seen lots of people have most of mine, but def not the combinations and the PSSD side of things are extremely atypical as well.  Even the drug and alcohol clinics who are the most familiar with PAWD (post acute withdrawal syndrome, same as protracted) say that PAWS is always acute and physical symptoms at the started and when the protracted stage is in affect, then it's psychiatric/mental/cognitive symptoms. 

I was totally the opposite, I had the acute stage as psychiatric, that cleared up after a few weeks, then symptom free for a few to many months, then this delayed severe physical and neological symptoms hit like a ton of bricks out of no where.   Again, very atypical.

All this said, everyone is different and some don't fit the mould of WD wave/window patterns and can even have this during the safest and slowest tapering as well and I am living proof that this can def happen despite the best efforts to mitigate them.

 

[LostInCanada]

1 hour ago, John said:

how do you know the percentage of occupancy?  

Mark Horowitz has put the percentages in his book The Maudsley Guide. You can also look at some of his SERT graphs for your particular drug and figure them out roughly.

[Onmyway]

1 hour ago, John said:

I have to ask; I understand about hyperbolic tapering, but how do you know the percentage of occupancy?  

It's been calculated for some drugs but the issue with it is that it has been done on a very small sample of people and so variation among people could be huge. You can check out the paper by Dr Horowitz 

https://markhorowitz.org/academic-paper/tapering-of-ssri-treatment-to-mitigate-withdrawal-symptoms/

He cites a paper by Meyer et. al. that does the measurements for citalopram. I haven't read his new book but it is supposed to have those curves for many more drugs. 

 

OMW

[6Eggs]

9 minutes ago, LostInCanada said:

Mark Horowitz has put the percentages in his book The Maudsley Guide. You can also look at some of his SERT graphs for your particular drug and figure them out roughly.

You can find some rough graphs for most drugs via google search, but I found very detailed tapering and occupancy data sheets in PDF form on the taperingstrips website. I highly recommend looking there and you can literally order the tapering strips of your drug on there and order a schedule to suit or make a custom one. Of course you need your doc to fill out and submit the prescription form. I believe they ship globally.

I wish I knew at the time as I would have gone that route instead of having custom doses compounded and lots of expense and doctor visits in the process.

The best bit of the data on their PDFs is you could get an idea of tapering duration and drug dependency looking at the schedules and recommendations as well as the stopping and dosage steps per reduction.

Some of the drugs like antipsychotics and antidepressants like effexor are super potent and need to be tapered over a year to a few years and down to stupidly low doses in the single to 10s of microgram range.

That is all guilds for typical person's response, it's not always the case for the outliers like myself.

I found the ultra potent antipsych Rexulti I was on was far easier to taper and get off than the very weak MOAI Moclobemide I was on and the data was the contrary to that. Even though at the beginning of the taper, it was the other way around. Rexulti was hard at the start but got easier as I tapered, Moclobemide was easy at the start and even made me feel better having reduced the dose a fair amount, towards the end of each, Rexulti was almost symptom free and the Moclobemide was horrific. So your mileage will vary, a lot in some cases.

Once I actually CT each for good, Rexulti was very acute and horrible immediately but has got better over time, Moclobemide was immediate relief and felt heaps better after CT, but 4 months later the severe WD finally kicked in abruptly.

[HugHK]

On 3/16/2024 at 10:21 AM, 6Eggs said:

Yes pretty much, I had waves and windows during the entire taper period, but I also was in protracted WD before I reinstated and started the taper properly again. Once my WD were triggered by the first failed attempt to taper and quit (to quickly, over 8 weeks), that was it, the WD symptoms never went away despite reinstating and hyperbolically tapering over nearly 2 years.  But as I reinstated and tapered, the windows and waves were there either way, not just there once I was off the drugs.

The funny thing is, it felt my best at the end of the taper and saw continuously improvement during the whole taper, at least with the first med and most of the 2nd med.  Actually successfully tapering off and finally quitting, the windows waves regressed back to similar levels at the first attempt to quit but it took months for this regression to happen.  So the whole windows waves progression is not something everyone gets, for me it was a lot of false hope and all over the shop with no clear overall trend.

Even though, now I have been about 10 months off the first drug and now over 4 months off the last one, I feel far worse than I was say 18 months ago and both drugs there was multi month delays to the onset of the worse WD symptoms. And each of the 3 times I quit one or the other, it was many months of decent relief from symptoms followed by a sudden and abrupt and severe delayed WD.

So even though I am and have been drug free for a decent amount of time, I don't have any clue what it will look like going forward, have I hit rock bottom yet? Am I slowly improving yet? Is it going to be more stable now or more erratic going forward?  I just don't know, I feel I am still bottoming out and don't expect to feel any better for some time yet. Everyone is different though.

 

Interesting, this is very similar to me. 

 

One of my largest waves, still ongoing, started 13 months after I last cut the medication dosage. 

 

Do you feel like something in particular started your recent waves (after you've been fully off), or do you feel like they came on naturally / there was nothing you could have done to stop them from hitting?

 

For me I am pretty sure that B12 supplements caused it. But generally I have developed new hypersensitivities over the last two years (last cut in dose was in April 2022).

[6Eggs]

No, nothing in particular triggered it, but each time I stopped, first time a failed attempt and the other 2 times for the two drugs were successful, but all 3 times had delayed major kind of WD/crash. Although the antipsych on the successful 2nd attempt was less pronounced as this big delayed event, but I certainly did have one or two events like this long after the more normal WD.

What I do notice is really odd mostly autonomic type "flashes" (several seconds of duration max) of various symptoms and they all were frightful in some way, like heart stopping for a few sec and blacking out mid doing something, hairs on my head, back and legs standing up and feeling of fright, seeing things in the corner of my eye that weren't there, sudden loss of hearing (very common one), room appears far away or going "up hill" disjointed faces, apparently this is very rare and only 7 documented cases globally and I had this as a side effect of the AP drug during use and it only lasts mere microseconds but is very jarring and disconcerting, sudden hot chilli burning sensation starting in my esophagus and spreading to my legs, unable to breathe and dissociation type of feeling that comes with it and severe sluggishness and incoordination, difficulty talking or undersanding (brain stem seizure?).

This sort of flashing are mostly just weird but otherwise I was mostly ok, then the big delayed WD crash like event happens months after and it's all just constant pure misery with little windows of relief.

This is the only somewhat of a pattern I have noticed and it has happened twice, first CT of the AP and now this 2nd time after CT of the AD, all many months.  Didn't really happen like this the 2nd time with the AP after tapering off that one, but there were delayed crashes lasting weeks/ more than a month I think 3 months after and then again around 5 months. But I got though them ok.

I know a lot of people report long lasting crashes from other substances and supplement, I took have had negative effects from lots of stuff due to this super sensitivity but they always settle quick.

For example, I get tremors bad from using many paint or hydrocarbon solvents/chemicals even when using extreme precautions, even full chemical respirator, a microscopic leak around my nose I got a whiff of the smell for less than a sec, so basically the tiniest exposure possible, within minutes I felt weak and had tremors, this was all while spraying a PCB with conformal coating outside at work with the breeze downstream of my body and face.  But after 30min I was back to my WD baseline.

This sort of feeling ill and having nervous system toxicity reactions to everyday products goes away quickly and never triggers a crash any longer than the trace substance being in my body.

Vitamins and other supplement have triggered reactions, but again, short lived and back baseline after it's metabolised.  Examples, magnesium (has a Valium like effect and knocks me out)  B3 in a high dose makes me feel very odd but goes away after a few hours, but it doesn't always happen. 

My best guess to why I get this delayed WD that is then protracted is, perhaps my brain can compensate for the lack of drug for quite sometimes but it eventually depletes it's "reserve" of whatever mechanism that allows it to compensate, then the long term remodelling needs to happen and begins the symptoms of WD.
 

[Onmyway]

I have been at this for 5 years now, slowly it still surprises me how suddenly and unexpectedly things turn. The last few weeks have been quite awful for me with spiraling thoughts/ruminations/obsessions/anger. Yesterday I walked and walked to get rid of the agitation and nothing fixed it. Nothing. I was so miserable. And today I woke up calm. It is like magic. I am not sure if and how long this will last but the fact that the change was so sudden and without any outside interventions/happenings boggles the mind. 5 years of this f*ing nightmare and no idea when this will relent. I still have 0.3mg to go and have stopped tapering for now. 

[LostInCanada]

@Onmyway I am in another wave again myself. This too will pass. You are such an asset on here. Wanted to know you are appreciated. ❤️

[Onmyway]

Thank you so much for your kind words @LostInCanada. I am so sorry you are in a wave. I would like to know a rhyme or reason for the sudden turns. It is hard to not have any control over these. I hope that you are managing the ups and downs. Please take care of yourself. The things that I don't always remember when I am in wave is that this is not you. This is not your fault and this is will end. Was it Churchill who said: "If you are in hell, keep walking."

[missy27]

@Onmyway im so sorry to hear this. It really does knock the wind out of you, esp frusterating when it comes out of no where. Sending positive vibes your way. 

[PortugueseSea]

On 3/29/2024 at 6:44 AM, missy27 said:

im so sorry to hear this. It really does knock the wind out of you, esp frusterating when it comes out of no where. Sending positive vibes your way.

I am on a wave too, it is like we are synched lol. Indeed, to be honest, I have stopped looking for reasons for waves beyond the obvious. Like, on Friday I drank a little bit of tea, it could have been that but who knows.

I just practice acceptance and surrender.

Keep walking guys! Happy Easter!

[jon1]

I agree. I was lucky enough to have a 'stress free' period for 3 months at the end of last year, and it made absolutely no difference to the cycle of waves.

 

So while there are things that can trigger a wave, or make us feel worse, they'll happen anyway, without any cause other than the brain healing itself.