intothewoods: help converting Provigil / modafinil to liquid for slow taper

October 24, 2019

On 10/24/2019 at 11:19 AM, Rhiannon said:

thinking of you today. I hope you're still feeling contented and happy in your little bungalow on the hill. How's it going?

Hi Rhi,

It's going quite swell, thank you. It's a delight to see you and @Guilietta in town (on my thread) as you guys (including super-cool @Erell and @ShiningLight) are too fun. Imagine: Fun in withdrawal!!

I apologize for not being up to speed on what's happening with everyone the past few weeks yet this gives me a chance to update my taper journey. Was it five weeks ago that I committed to a taper of two meds every two weeks at four percent? 🙄 And then you kindly suggested I might reconsider that, ahem!...it might be a bit too....aggressive? Then I said....

On 9/18/2019 at 12:14 PM, intothewoods said:

that I'd just do two at the time for now - - two with opposite effects, like the stimulating Provigil and sedating Elavil - and do a Brassmonkey Slide to be safe. I'm acutely aware that things can snap out of hand in a second and, as you say, even before our bodies realize it. I'm not looking for speed but stability. I'm grateful for the 4% start, but not every two weeks.

No and not every month. In fact, after the four percent drop, I got hit 10 days in with intense WD symptoms for five days. No insomnia, which is a first with taper attempts. Yet, it made me step back and realize that for three years, I not only have unstoppable akathisia but the every-morning odyssey where you wake on cue being shot out of a cannon while your brain negotiates whether you're in a coma or are under nuclear attack, and your veins are flooded with red-hot terror. It's not a small thing but lasts well into early afternoon for me, every single day.

It made me wonder if some of us really should taper -- as I was assuming-- while we're kindled and destabilized or if we can stabilize without harm, even if takes a year or 18 months. But, how long do we wait before we say no more holding? I held seven months but made changes in the beginning as I target-shot my Provigil dose after converting to liquid and also the Elavil to liquid and tapering too fast 10 months ago. We all have situations like this where every false move counts toward the future and must be considered.

Also to be considered is the harm the current meds are doing. Elavil is causing dystonia now and, some of my friends would tell you, early dementia 😂. So a week ago, I dropped the Elavil alone by 2 percent. Within three days, I had vicious WD symptoms. Reinstated last Sunday night and on Monday -- had the only real, lasting window of human life in five years. I told no one, just danced around the wood floors and walked in the gardens and nailed artwork to the walls like it was nothing. Normally, it would be a HUGE ordeal, any of those things.

By Monday night, the window was closing and I felt I was in the movie "Awakenings" with Robin Williams, a patient snapping out of stupefying Alzheimer's to splash in the waves only to have it all snapped away again. These are our waves, and windows.

On 10/24/2019 at 12:32 PM, Guilietta said:

It sounds like you are in a corner or paradise and picking away at your book.

Yes, G! Picking away and sometimes bounding, as the brain reclaims whole sections. Thank you for the cheers and wise words, which I see each day.

Again, apologies for not getting current with your thread and my other pals but I will and I look forward to it 😊.

Hugs to you all,

Catherine

October 25, 2019

I feel your dilemma Catherine . It’s such a hard judgement to call. Very much a trial and error . I think we can only go with our gut and instinct on it.

October 25, 2019

23 minutes ago, India said:

I feel your dilemma Catherine . It’s such a hard judgement to call. Very much a trial and error . I think we can only go with our gut and instinct on it

True words, @India. Trial and error, with the wellspring of experience and knowledge on this site. Still huge gaps in discovery as more people with more complex med "treatments" flood in. Time and listening to the body, as you say, are key. We are privileged to make history.

October 25, 2019

Hi @intothewoods, you have a very calm and measured way of describing this process and also the larger injustices surrounding ADWD. I wish you well in the process of writing your book. I too, feel a conviction to get my story down on paper and educate the public and health professionals at large.

@Erell what a loving thought, that you wish to provide this information to the French-speaking world. I’m sure you are already doing so in small and large ways. How lucky we are to speak English and be able to find this information relatively easily.

I’ve outlined a book that mostly tells my personal story and then points to some of the science behind withdrawal as well as the 10% taper. Have yet to write anything substantial, though I do want to draft an op-ed as a way to get the juices flowing (and engage in some quicker action than a book that naturally takes time). I would echo your thoughts that yes, I’ve found my story to be quite profound in terms of the sequence of events and insights gained about myself and the world. Our eyes are opened in a big way and there is much to be done. I’m currently in grad school so not finding much time to really sit down and get writing, but perhaps you would be interested in some peer feedback and accountability from time to time? Via email and shared drafts over Google Docs or Word. You can send me a message if interested and we can go from there.

October 25, 2019

Hello Catherine,

Good to hear your happy voice and humorous approach to mananging WD.

Nothing the matter with your wit. Forget about the alzheimer's. Stay away from the movies, articles, etc. on that. The rate of this is high enough for the population that is not on these fun meds. Exercise is one of the best ways to help reduce this - and oh, I came across something about 40 hz to help with this (by accident - I was looking for stuff to help us sleep and found 432 hz! you can find both on youtube!). Note that we can't hear 40 hz but can feel it....

Did you know that we can save more money at the grocery store when we go more frequently? About $1500 a year? The rationale is that we buy only what we need. My rationale is that it is all that fits in my little fridge. 🤣 Story on the news this morning. Now shutting off the tube.

You've not missed anything terribly exciting on my thread. No worries about visiting anytime soon.

Just be well,

Giulietta

October 25, 2019

Thanks so much you guys. I truly appreciate the support, and this morning am wondering if you have any thoughts on my quandary of : Is there such a thing as too long of a hold when you're grounded with unrelenting akathisia and cortisol explosions for years? What's changed now is I'm free of a hostile living environment for the first time in five years. It's profound, just being able to have peace in one's home during WD. But it's not quite three months here so I am hoping this is the deal-maker for some stability and will hold till year's end at least. That is the plan now but I'd love feedback from your wise experience @composter, @Guiliettaand especially @Rhiannon because of our marathon polymed journeys. As @Indiasays, it's a tough dilemma. But I genuinely want to make the right, best choices as I motor along. (Remember : the goal is for us to have fun 😅).

BTW, I erred when I said the patients in "Awakenings" were being treated for Alzheimers. It was a form of encephalitis, at the time thought to be Parkinsonian. Must have been my Alzheimers, @Guilietta 😏.

October 25, 2019

1 hour ago, intothewoods said:

patients in "Awakenings" were being treated for Alzheimers. It was a form of encephalitis, at the time thought to be Parkinsonian. Must have been my Alzheimers

I have to look up details to recount things completely accurately - and don't have Alzheimers - just (particularly selective) short-term memory issues...😎

October 25, 2019

Hello again, into.

Are you feeling a bit better in your new home? What is your current drug schedule?

Please update your drug interactions report https://www.drugs.com/interactions-check.php?drug_list=1303-775,739-380,1115-648,1647-1020,168-0,862-441

and post the link here.

October 28, 2019

On 10/25/2019 at 4:39 PM, Altostrata said:

Hello again, into.

Are you feeling a bit better in your new home? What is your current drug schedule?

Please update your drug interactions report https://www.drugs.com/interactions-check.php?drug_list=1303-775,739-380,1115-648,1647-1020,168-0,862-441

and post the link here.

Hi Alto,

Yes, feeling much better in my new home -- thank you!

My drug interactions haven't changed since we ran them in December (link below) along with the therapeutic drug interaction checker.

I'm keenly aware of the interactions, am working monthly with my doctor (who is thrilled with my progress and said I looked better last week than I have in years --- yay!), and am sticking to a very conservative, cautious low taper. Instead of entering medical diagnostic terrain here, I really love the amazing peer support from so many SA pals, especially @Carmie, @puthappinessfirst, @Guilietta, @Rhiannon @India, @ShiningLight, @Erell, @powerback @Onmyway, @Kristine, @DeterminedAnna and @Stacy.

I've told you personally many times how grateful I am for your incredible work and this site, and I happily say it again now. Thank you, from my heart 💜.

intothewoods

Edited October 28, 2019 by intothewoods
punctuation

October 28, 2019

You're so welcome. Carry on!

October 29, 2019

On 10/25/2019 at 11:49 AM, intothewoods said:

Thanks so much you guys. I truly appreciate the support, and this morning am wondering if you have any thoughts on my quandary of : Is there such a thing as too long of a hold when you're grounded with unrelenting akathisia and cortisol explosions for years? What's changed now is I'm free of a hostile living environment for the first time in five years. It's profound, just being able to have peace in one's home during WD. But it's not quite three months here so I am hoping this is the deal-maker for some stability and will hold till year's end at least. That is the plan now but I'd love feedback from your wise experience @composter, @Guiliettaand especially @Rhiannon because of our marathon polymed journeys. As @Indiasays, it's a tough dilemma. But I genuinely want to make the right, best choices as I motor along. (Remember : the goal is for us to have fun 😅).

BTW, I erred when I said the patients in "Awakenings" were being treated for Alzheimers. It was a form of encephalitis, at the time thought to be Parkinsonian. Must have been my Alzheimers, @Guilietta 😏.

I am a fan of the long hold, so that's what I'm usually going to vote for. Yes, you have to balance the damage caused by meds with the damage caused by trying to come off them too fast. That's always an issue. I understand that. It's tricky to balance. For me, the damage and suffering caused by withdrawal trumps the damage caused by the meds at this point. Earlier in my taper I was more aggressive. I'm not sure what I would do if I had it to do over again.

It sounds like you're experiencing active akathisia and intense cortisol mornings pretty much daily, is that correct? Plus, after a long time of living in a place where you weren't really safe, you are now living in a place where you feel safe, is that correct? I think our body/brains may kind of postpone some of the healing work they need to do when we are not safe and save it for when we are safer.

Putting all of that together I would say this is a time to hold and heal.

Something you might consider is doing a 3-6 month hold, see if things improve a bit during that time, then if you are pretty stable, pick up with a very very small taper, cutting no more than 1% of any one drug, and see how your body reacts to that. It's not the pace you'll need to be on forever; in a way it's like extending your hold but with a little bit of decrement to see how your body/brain reacts. If you can stay feeling stable on a tiny microtaper, then you can very gradually increase and see where your sweet spot is.

During the hold, rank your symptoms daily, it can be difficult for us to see whether or not things are improving otherwise, when we are in withdrawal we don't reliably remember past suffering when we're feeling better or past moments of feeling better when we're suffering.

If you don't stabilize at all you may need to hold longer. Sometimes people have to hold for over a year to get stable enough to taper. It seems to me that tapers that are begun once a person is feeling fairly stable, WDnormal, and that go slow enough to keep symptoms in that "WDnormal" range, are in the long run more successful than the tapers done in spite of being symptomatic. Plus you can actually live while you're tapering instead of postponing "life" for years.

I wish there was an answer that was safe, easy and fast. I just haven't seen that. Sometimes people can come off meds pretty fast, but I just really never see that with people who have been on multiple meds for long periods of time.

These days, for me, I just see it as keeping the balance that allows me to live my life while reducing harm from the drugs optimally, which means both reducing the harm caused by taking the drugs but also reducing the harm caused by stopping them.

October 29, 2019

Wow. Every last thing you say is my gut feeling, has been my gut feeling, and yet I felt compelled to keep trying to taper. Now I can have some peace with evidence-based (your life is powerful evidence) conviction.

You are correct that every day I have akathisia plus the morning cortisol which is more like half-day cortisol. For years. That alone suggests not making any changes, but this part connected the final dots for me:

4 hours ago, Rhiannon said:

Plus, after a long time of living in a place where you weren't really safe, you are now living in a place where you feel safe, is that correct? I think our body/brains may kind of postpone some of the healing work they need to do when we are not safe and save it for when we are safer.

Yes I finally am living in a place where I feel safe, and where my soul and psyche can thrive. Up to now, most healing has been postponed, as you say. I see it dead-straight in my case of long-time poly-pharmacy and years of rapid switching. That ended three years ago but the damage remains. I haven't begun to catch up with what it means to be human again.

Perhaps the concept of safety has thrown me as I've always considered myself pretty calm in scary situations. My work involved traveling alone in the Central American jungles in a 4 X 4, hanging out at Death Row on weekends, and tracking down serial rapists. I had some edgy moments but absolutely nothing can touch the type of fear induced by psych med WD. We all know it and loathe it. There's nothing in society to attach it to, no movie that portrays a nervous system so unhinged that you can't bear the sound of a bird chirp. The diabolical nature of ADWD is truly sad yet it's incredibly fascinating to me as a journalist. I'm thrilled to see yet another underbelly of life. To live it, year after year, and to help others.

4 hours ago, Rhiannon said:

During the hold, rank your symptoms daily, it can be difficult for us to see whether or not things are improving otherwise, when we are in withdrawal we don't reliably remember past suffering when we're feeling better or past moments of feeling better when we're suffering.

Very true. So yes, I keep a kitchen journal and noticed yesterday that one huge progress since moving is that I no longer take a cooler to bed. When I converted the Provigil to liquid last December, along with other changes which caused more destabilizing, I became too sick to get up in a timely manner to take it in the kitchen. The morning cortisol became so violent that at least 90 minutes had to pass before I could walk. So every night, my Provigil and oral syringes went in the cooler with my green smoothie and I'd hang over the side of the bed in the morning to dose it all. Suddenly, on October 12th, I knew I could get to the kitchen. And I have ever since.

4 hours ago, Rhiannon said:

I wish there was an answer that was safe, easy and fast. I just haven't seen that. Sometimes people can come off meds pretty fast, but I just really never see that with people who have been on multiple meds for long periods of time.

You don't have to wish for that because it makes no sense logically or scientifically or any other way. Our bodies have been blasted to bits and all they ask for is time. Either way, it will take time. As you say, you can taper in chaos and suffering and it might take longer; or hold, stabilize, and go very, very slow and have a real life. The 1 percent taper trial eventually is safe. Never cross the line of stability again if you can help it. You didn't know where that line was as you got lower on your meds. Every move changes the game. I'm sorry you had to go another round of this hell but glad it led you back to SA.

I can't thank you enough for this.

Peace and Joy to the Pacific NW ....

November 5, 2019

On 10/29/2019 at 9:28 PM, intothewoods said:

Perhaps the concept of safety has thrown me as I've always considered myself pretty calm in scary situations. My work involved traveling alone in the Central American jungles in a 4 X 4, hanging out at Death Row on weekends, and tracking down serial rapists. I had some edgy moments but absolutely nothing can touch the type of fear induced by psych med WD. W

@intothewoods Wow, formidable woman you are and just goes to illuminate the severity of it all.

Glad you are feeling safer - so important.

It is such a chess game, like you say. Always enjoy your updates.

November 6, 2019

On 11/5/2019 at 11:29 AM, India said:

Formidable woman you are and just goes to illuminate the severity of it all.

Glad you are feeling safer - so important.

It is such a chess game, like you say. Always enjoy your updates

Thank you, @India. It's extra fun to see you've visited my thread with your elegant thoughts on WD. Yes, a chess game.

Not feeling formidable at the moment as I'm having to cross-taper my Prozac old generic to a new one. The manufacturer I've used for years is discontinuing fluoxetine (lack of profit, no doubt) and the new generic -- which coincidentally I've taken in the past -- has plunged me into that strangling WD space. It's astounding, like someone pulled a trigger on the third day I was 20 percent crossed-over. I have to cross to 100 percent next month as I have no choice. Our bodies become unconscionably sensitized with all the changes. Antidepressant WD is quite the human equalizer.

You sound really good. We're healing every single second. I can feel it....

Edited November 6, 2019 by intothewoods
excess brain cooties

November 6, 2019

On 10/29/2019 at 5:28 PM, intothewoods said:

I had some edgy moments but absolutely nothing can touch the type of fear induced by psych med WD.

I could not hazard a guess about what it could be like in a 4x4 in central America - but WD is pervasive, inescapable and unrelenting and fortunately not forever. You truly have an adventurous spirit.

7 hours ago, intothewoods said:

discontinuing fluoxetine (lack of profit, no doubt)

Quite correct. Last summer clonazepam became unobtainable (not joking) at a major chain pharmacy because two generic manufactuers discontinued manufacturing it at virtually the same time. I can't imagine it not being profitable. I believe it is used in opiate WD treatment (but not sure) - in which case there is high demand.

7 hours ago, intothewoods said:

It's astounding, like someone pulled a trigger on the third day I was 20 percent crossed-over. I have to cross to 100 percent next month as I have no choice.

I'm sorry about this. @Gridley just had to change ativan manufacturers and what a pain. In January (or when my current supply runs out) I will have to switch from lamotrigine ER to short term lamotrigine. The ER will no longer be covered at an affordable price. 🙁

Be well,

Giuilietta

November 8, 2019

On 11/6/2019 at 7:57 AM, intothewoods said:

Thank you, @India. It's extra fun to see you've visited my thread with your elegant thoughts on WD. Yes, a chess game.

Not feeling formidable at the moment as I'm having to cross-taper my Prozac old generic to a new one. The manufacturer I've used for years is discontinuing fluoxetine (lack of profit, no doubt) and the new generic -- which coincidentally I've taken in the past -- has plunged me into that strangling WD space. It's astounding, like someone pulled a trigger on the third day I was 20 percent crossed-over. I have to cross to 100 percent next month as I have no choice. Our bodies become unconscionably sensitized with all the changes. Antidepressant WD is quite the human equalizer.

You sound really good. We're healing every single second. I can feel it....

Oh bummer, I'm so sorry.

Your strong reaction to the change in manufacturer (which probably includes a small percentage change in dose) just confirms for me that it would be a good idea for you to hold now for a while. I know it's frustrating and hard, especially as much as you hate these drugs and want nothing more than to throw them all in the garbage and be free of them. Really, these drugs are not only brain-damaging and horrendous in use and in withdrawal, but being forced to continue poisoning ourselves every day is another whole level of psychological torture. GRRRRRRRR.

But I also notice how well you are doing with your Provigil, down from a max of 300 mg to just 29 mg now. So there is something to celebrate! And the other ones have come down as well. Stay strong on the journey. 🙂

November 8, 2019

On 11/6/2019 at 6:27 PM, Guilietta said:

I'm sorry about this. @Gridley just had to change ativan manufacturers and what a pain. In January (or when my current supply runs out) I will have to switch from lamotrigine ER to short term lamotrigine. The ER will no longer be covered at an affordable price. 🙁

@Guilietta, I am truly sorry you and dear @Gridley have to cross these landmines. Especially that you have to go from ER to immediate release. Groan. We stick together and will make it together 💜.

1 hour ago, Rhiannon said:

Your strong reaction to the change in manufacturer (which probably includes a small percentage change in dose) just confirms for me that it would be a good idea for you to hold now for a while. I know it's frustrating and hard, especially as much as you hate these drugs and want nothing more than to throw them all in the garbage and be free of them. Really, these drugs are not only brain-damaging and horrendous in use and in withdrawal, but being forced to continue poisoning ourselves every day is another whole level of psychological torture. GRRRRRRRR.

@Rhiannon. I thought the same thing, that if a little generic swap is this atomic -- I sure am glad I am on a long hold thanks to you!

Things are getting worse with the generic so spoke with pharmacist today who said I'd soon need to switch to a THIRD generic which is not possible without hospitalization. She's ordering six months' worth of the good generic at higher dose which I'll convert to liquid and begin using that as 10 mg portion of my 50 mg dosage. In other words, starting tomorrow, I'll take a 40 mg capsule and 10 mg liquid, all my historic generic. No change of dose. She can get another year's worth to buy time. I hate to mess with anything as you know but that recent generic switch is growing more ghastly. So grateful to have an amazing doctor and two pharmacists (at two different chains) on board with this taper.

1 hour ago, Rhiannon said:

But I also notice how well you are doing with your Provigil, down from a max of 300 mg to just 29 mg now. So there is something to celebrate! And the other ones have come down as well.

I just re-inserted my med history in my signature which explains in a nut why I'm kindled to smithereens. And now you know why I've paid close attention to your course. You've met many of these usual med suspects on the go-around over the years. Mine was like a machine-gun attack from 2012-2017. I was only able to regain what I have because I had help returning to my doctor of 18 years in 2017. Stability is the goal now. (Why on earth I was trying to fast-multi-taper last month is another story but thanks to all on SA, with a happy ending.)

1 hour ago, Rhiannon said:

Stay strong on the journey. 🙂

You got it.

November 8, 2019

Great news! Pharmacist just called and found a pile of the 10 mg generic I was taking. This will help me buy time, at least a year, to figure something else out.

What zany lives we lead 🙃.

Better times ahead. Happy Weekend, everyone! 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️

November 8, 2019

40 minutes ago, intothewoods said:

I'd soon need to switch to a THIRD generic which is not possible without hospitalization.

I don't understand this - but that being said - holy cow! That being said, I'm extremely glad that your pharmacist was able to obtain several months' supply of good generic for you. What a relief. I'm glad also that you are back on same generics and same dose - even though we'd soon like to be off all this crap.

48 minutes ago, intothewoods said:

So grateful to have an amazing doctor and two pharmacists (at two different chains) on board with this taper.

This is HUGE plus. You are very fortunate.

@Rhiannon "Really, these drugs are not only brain-damaging and horrendous in use and in withdrawal, but being forced to continue poisoning ourselves every day is another whole level of psychological torture."

Yep. Chinese water torture without the water.

Thinking of you, Intothewoods.

Hugs,

Giuilietta

November 8, 2019

9 minutes ago, intothewoods said:

Great news! Pharmacist just called and found a pile of the 10 mg generic I was taking. This

It doesn't get any better than this! 😁

I am THRILLED for you!

November 8, 2019

22 minutes ago, intothewoods said:

Great news! Pharmacist just called and found a pile of the 10 mg generic I was taking. This will help me buy time, at least a year, to figure something else out.

I'm very happy for you, intothewoods!

November 8, 2019

11 minutes ago, Guilietta said:

It doesn't get any better than this! 😁

I am THRILLED for you!

Thank you, @Guilietta. Such a joy to take this journey with you. Soon we'll be back in the writing war room! 😂

November 8, 2019

1 minute ago, Gridley said:

I'm very happy for you, intothewoods!

Thank you @Gridley! I appreciate you guys more than you know. I"m sorry I've not been able to post more on your thread but I always cheer for you. Your story is amazing!

November 9, 2019

19 hours ago, intothewoods said:

Great news! Pharmacist just called and found a pile of the 10 mg generic I was taking. This will help me buy time, at least a year, to figure something else out.

What zany lives we lead 🙃.

Better times ahead. Happy Weekend, everyone! 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️

Yay!

19 hours ago, intothewoods said:

I just re-inserted my med history in my signature which explains in a nut why I'm kindled to smithereens. And now you know why I've paid close attention to your course. You've met many of these usual med suspects on the go-around over the years. Mine was like a machine-gun attack from 2012-2017. I was only able to regain what I have because I had help returning to my doctor of 18 years in 2017. Stability is the goal now. (Why on earth I was trying to fast-multi-taper last month is another story but thanks to all on SA, with a happy ending.)

Thanks for the background info. That sounds like a really rough and chemically chaotic five years, no wonder you need a little more time to stabilize. Plus whatever your recent living situation was where you didn't feel safe, which must have been stressful, which probably didn't help. Be patient with yourself. Right now might be a good time to really focus on being gentle with your CNS, practicing self-care in whatever ways you can, and just really loving yourself and letting yourself have the luxury of time to heal.

Ten years out from my worst years (chemical chaos and withdrawal wise) and I am still noticing improvements and healing, as well as places that still need more healing. It's a process, a journey, and you are on your way.

Hugs, have a great weekend.

November 11, 2019

On 11/9/2019 at 12:30 PM, Rhiannon said:

Thanks for the background info. That sounds like a really rough and chemically chaotic five years, no wonder you need a little more time to stabilize. Plus whatever your recent living situation was where you didn't feel safe, which must have been stressful, which probably didn't help. Be patient with yourself. Right now might be a good time to really focus on being gentle with your CNS, practicing self-care in whatever ways you can, and just really loving yourself and letting yourself have the luxury of time to heal.

Ten years out from my worst years (chemical chaos and withdrawal wise) and I am still noticing improvements and healing, as well as places that still need more healing. It's a process, a journey, and you are on your way.

I seriously needed this. The okay to simply be and heal and not keep pushing to taper or do anything else but have peace and get to Ground Zero. We all want to ditch these drugs yesterday, and have pressure from those who can't understand (and some who should) to reduce the drugs now. I also grow weary of the "why are you taking ALL those drugs?" or similar. It feels a bit like being back in the psych-doc cosmos where you're slowly, subtly notched down from the get-go. I hear it most from those who are tapering "only" one drug and yet in my research, I've not encountered serious symptoms that set poly-drugging apart from mono-drugging. Looking under "Symptoms and Self-Care" here on SA, we are sharers alike (unfortunately 😢).

You rise above it and as proof, here's a dispatch from my mom (my best friend who's 80, been through Effexor WD hell, and is poly-drugged) after reading your response to me:

Rhiannon is certainly aware of the many pitfalls with w/d.

With her years of experience and the compassion and a

desire to help, I’m sure she will help many. I especially

appreciate her view of time.

I know you are progressing, I see the the efforts, maybe now is

“ a good time to really focus on being gentle on your CNS”.

Reading about your daughters and granddaughter -- I can tell you're a cool mom, too. It's rare to have a cool mom! Mine is the reason I became a writer and it's kind of funny. I was 17 and just started college, applied for a part-time job at The Tampa Tribune with the title "clerk" only to learn it was 36 hours a week writing community news. I said no, I don't like to write. Got home and Mom said: "Go back! You can write and you will love this!" So I did and within a month, I'd somehow written my first human interest piece on the school principal, and the rest is history. How do moms know these things? 😄

You said you'd support my work on this drug debacle -- and now you have. Just giving me the insight to see why not being "safe" for five years hindered and indeed worsened the med damage -- it helps my brain with the writing. The chapters, the articles, the stories are here in technicolor and yet, I'm so dead-dog sick I can't muster a taper and manage the CFS plus put it all together fast like before. This setback with the generic sent me flat on my back for 19 days. It was SO MUCH WORSE than the recent tapers which weren't bad at all. Yet as @GiaK says: "Everything matters."

So thanks @Rhiannon, and also a huge thanks to @Carmie who's been encouraging me almost daily to just let my body be and heal. She went through the drug mill like us and after years, is really low on her Seroquel and doing great. When we met on SA in December and learned we are sisters (we share the same faith), it's been like I'm living part-time in Australia. Photography is her hobby, her pics are amazing, our family is large. She's not been able to be on site lately as she's dealing with grievous new circumstances but she says hello to all. (@Gridley, she said that like me, she is inspired by your multi-med journey and also, we picture you in beautiful Ecuador with sweeping mountains and gentle donkeys )

Wishing all a strong week in the WD trenches, with promises I shall visit your threads to rally once I lose this temporary torched brain.

Catherine ❤️

November 11, 2019

18 minutes ago, intothewoods said:

sweeping mountains and gentle donkeys )

We just fed them broccoli leaves, carrots and bananas. They are spoiled and don't do a lick of work except eating.

You are so right that you don't have to be doing anything to be making progress. Holding is making progress. Holding is healing. I am a big proponent of being kind and gentle to yourself.

November 11, 2019

49 minutes ago, Gridley said:

We just fed them broccoli leaves, carrots and bananas. They are spoiled and don't do a lick of work except eating.

I love it! Healthy diet plus they know how to chill 😎.

51 minutes ago, Gridley said:

You are so right that you don't have to be doing anything to be making progress. Holding is making progress. Holding is healing. I am a big proponent of being kind and gentle to yourself.

This is awesome - - I can't thank you enough, @Gridley!

November 12, 2019

Your mom sounds great. I would love to meet her, is she on this site?

Thanks as always for your appreciation and encouragement, Catherine.

November 12, 2019

On 11/8/2019 at 10:12 PM, intothewoods said:

Great news! Pharmacist just called and found a pile of the 10 mg generic I was taking. This will help me buy time, at least a year, to figure something else out.

What zany lives we lead 🙃.

Better times ahead. Happy Weekend, everyone! 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️

@intothewoodsThat's fantastic. "It's not the elephants but the mice". A safe living situation AND a med stockpile. Yes, I just wrote on my page about the alternate reality we all occupy. I had some akathesia the other day and I thought of you -- truly horrible. Yours starts AM. Weirdly, mine starts evening time often.

"Wanting to ditch the drugs yesterday"-- it's counterintuitive to taper slowly. I think instinctively if something feels like a threat or poison- the instinct is to get rid of it? It takes a lot of strength not to listen to those who have no idea, yet think they do. Actaully, I get silently furious, aren't we the experts-- the one's going through it, the ones actually on these drugs. As Dr. Peter Gordon says, " There is a dangerous trend amongst prescribers not to listen to their patients.

What will you do this weekend?

So glad to hear of your writing better times ahead. Thank you for reminding me of the healing that sometimes is forgotten- such is the reletavism of it---- every moment feels like a totality....

December 5, 2019

@brassmonkey, I wonder if you could help solve a dosing mystery resulting from an error on my part with my Amitriptyline.

I typically make a 1 to 1 ratio using fifteen 25-mg tablets of the med and 375 ml of water. So 375 mg to 375 ml and then I draw out 22.5 ml to dose at night.

Today I went to make a new batch only to learn I had used sixteen tablets instead of fifteen -- two weeks ago. So for two weeks, I've been getting more than 22.5 ml at night, which explains why I'm getting worse after a partial change in Prozac manufacturer a month ago after a three-day drop in Elavil two months ago. I'm now not only six weeks in bed in a state of not being able to move, think, function without massive CNS horror with the most acute akathisia and cortisol blasts I've known but ...it's getting worse.

If you can determine the additional I've been taking, then when I take my dose tonight I'll try to slowly back down.

Obviously I'm shocked and distressed but can only go forward.

Thank you sincerely for any help, Brass.

Catherine

December 5, 2019

25 mg times 16 tablets = 400 mg total in the batch. 400 mg / 375 mL = 1.067 mg per mL of solution. 1.067 x 22.5 mL = 24.0075 mg of amitriptyline per dose. That's what you've been getting.

December 5, 2019

Just now, Rhiannon said:

25 mg times 16 tablets = 400 mg total in the batch. 400 mg / 375 mL = 1.067 mg per mL of solution. 1.067 x 22.5 mL = 24.0075 mg of amitriptyline per dose. That's what you've been getting.

GROAN. Thanks so much, Rhi.

December 10, 2019

An update on my Elavil debacle: I was able to edge back down from 24 mg to 22.5 in three nights. First night very little sleep and all violent but I immediately began feeling less toxicity. By Saturday I tried 22.5 mg and last night was night three on that dose so I'm on my way. After 6 1/2 weeks in bed (starting with the Prozac generic snafu), I am able to walk and get dressed today. The words grateful, blissful, relieved come to mind and I'm sure more will follow. (thoughts, I mean; I've not had much lucidity lately...LOL).

December 10, 2019

Hi Catherine,

so sorry you have been in so much turmoil. I have been MIA for a while though I check the symptoms part quite often. Love your little community here and so happy to be part of it

I wanted to add some random facts about the generics and why switching between them in WD may have such a huge impact. So when the FDA approves a generic, that new chemical does not need to be tested in extensive clinical trials. The active ingredient is the same between the various generics but it is a new 'chemical entity' because in addition to the drug part (the active ingredient) it also has some non-drug parts (inactive ingredients) which may differ between the different formulations. These inactive ingredients, which can vary, can modify and influence the absorption of the drug in the human body. So if the inactive ingredient inhibits the absorption, then you are practically getting less of the drug. But it can go the other way around as well, you could be getting more of the drug if the previous generic's inactive ingredients inhibited its absorption. For example for the liquid citalopram 8mg of the liquid is equal to 10mg of the tablets (at least the UK formulation) but similar 'equivalencies' exist between tablets. Problem is those are not disclosed or studied much so there is no table of equivalencies out there.

When the FDA approves a generic, it tests it on a few people (usually young men) and measures how much of the drug is available in their blood at various times after they have taken it. If it is within 20% of the original drug (+/-) , then the FDA will approve that generic. For most people and most drugs 20% may not be such a huge deal but for sensitized CNS's it matters a great deal. For other drugs it matters as well so doctors have the option of writing "no-substitutions" between generics and original molecule drugs but I am not sure if they have that option between different generics. (Option in the sense that the pharmacist HAS to honor it and the insurance company HAS to accept it and pay for it). This is true for example for blood thinners and likely between large molecule drugs.

You can imagine that there are differences also between the influence of the inactive ingredient in one human body and another and between people of different ages or between women and men etc.

This gets even more complicated as you are at the lowest dosages of tapering. The Horowitz paper showed how SSRIs (probably antipsychotics as well) occupy a large percentage of the SERTs at low doses - so at 1.30mg citalopram occupies about 30% of the SERTs, at 0.8mg 20% but at 5mg 50% and 20mg around 85%, so it's not a linear increase but a very steep curve at the low doses and a flat one at the upper doses. So as you go low and make a 20% decrease or increase as you change generics you may be making a bigger increase at SERTs than you would at the higher doses. Now SERTs and WD are correlated, it is most likely not the whole story but the principle is probably similar for other things that the changes impact. So if you can stock up for many years, it is worth the money spent if affordable and available. But I don't know how long you can store these drugs so that's another risk with long term storage. They might lose efficacy as you store them longer.

The hits don't stop, do they? This really tests our capacity for resilience and adaptation.

Hoping for quick improvements with holding.

Hugs,
OMW

December 12, 2019

Hello Catherine and @Onmyway

On 12/10/2019 at 12:33 PM, intothewoods said:

After 6 1/2 weeks in bed (starting with the Prozac generic snafu), I am able to walk and get dressed today.

There's a huge win! I'm really happy for you and holding good thoughts that life improves for you.

On 12/10/2019 at 4:56 PM, Onmyway said:

If it is within 20% of the original drug (+/-) , then the FDA will approve that generic. For most people and most drugs 20% may not be such a huge deal but for sensitized CNS's it matters a great deal. For other drugs it matters as well so doctors have the option of writing "no-substitutions" between generics and original molecule drugs but I am not sure if they have that option between different generics.

Unless I overlooked it in your brilliant factual summary - it is permissible by law in my state that there be up to 30% difference between generics. I don't know if this is federal. My former nurse practitioner in neurology told me this and to keep with the same generic manufacturer for my epilepsy meds. The MD can request no substitutions in my state but I have found that I have to harangue the pharmacy to make sure they get the same manufacturer. They often claim they can't obtain the generic you want.

I have been advised if there needs to be a switch between generics - it should happen very infrequently.

On 12/10/2019 at 4:56 PM, Onmyway said:

So if you can stock up for many years, it is worth the money spent if affordable and available. But I don't know how long you can store these drugs so that's another risk with long term storage. They might lose efficacy as you store them longer.

Have you tried to get a prescription - even if you pay out of pocket @intothewoods ? I grudgingly got one for lamotrigine even to pay a bundle for an extra 90 days' supply.

Even though the expiration date my be one year - I believe the efficacy may be lost on many drugs. I use ativan prn and it definitely loses potency and integrity long before then.

Hugs,

G

December 13, 2019

On 12/10/2019 at 4:56 PM, Onmyway said:

Love your little community here and so happy to be part of it

Wonderful to have you in our neighborhood! We are laid back (joie de vivre-imperative) yet ever keen on the cutting edge. Which, wow, you brought with you in regard to the generic formulations (mutations, I call them). Thank you so much.

My body has long told me that a switch in generic is worse than staying up all night yet I've read only slivers of experiences like mine. I did start a page here on generic foibles when the book "Bottle of Lies" was published recently and will hop over to expound on with your insight.

On 12/10/2019 at 4:56 PM, Onmyway said:

These inactive ingredients, which can vary, can modify and influence the absorption of the drug in the human body. So if the inactive ingredient inhibits the absorption, then you are practically getting less of the drug. But it can go the other way around as well, you could be getting more of the drug if the previous generic's inactive ingredients inhibited its absorption.

So as an example, which you graciously provided me, say that the 20 mg of the Sandoz fluoxetine I've been taking can be bioequivalent to 16 mg of another generic brand of fluoxetine (say NorthStar) or of 24 mg tablet of a third generic brand (say, Teva). Physically they'd all have 20 mg of the active ingredient but the inactive ingredients substantially change the absorption of the drug so that your body gets significantly more or less. And if you switch multiple times, you are in worse trouble.

I was in worse trouble because not only did the Teva feel like WAY MORE drug in my system but I accidentally increased my Elavil at night when I added an extra pill to my two week liquid tapering elixir. For 16 days, I was taking/absorbing more of both ADs with interactions. Part of the problem is Prozac's (fluoxetine) long half life of 15+ days. No wonder I was losing the ability to walk and speak. Now, seventh week in bed, I'm free from terror (thank you, @Carmie, for not freaking out over my Frankenstein emails) but just want to sleep and barely move about. I am cheering, though, because: Look at what we've learned! We not only know better for next time but can help others not get lost in this rabbit hole. YES!

1 hour ago, Guilietta said:

Have you tried to get a prescription - even if you pay out of pocket @intothewoods ? I grudgingly got one for lamotrigine even to pay a bundle for an extra 90 days' supply.

Again, @Guilietta is ahead of the curve. I was buying 90 days of the meds (versus no cost through Medicaid but then it would be a generic free-for-all by month) but my doctor kindly prescribed a year's worth of the ADs and the pharmacist filled 9 months' worth. That isn't really very long in our tapering time zone but it's better than one month. And my meds aren't expensive like your lamotrigine. It grieves me that you've been caught in this polymed mix because of your epilepsy. You can't live without the lamotrigine and one or more of the others. I've been following your page and ...wow. So glad you have huge supportive hands helping ( @Shep, @Gridley) and sorry that your living situation is temporarily painful. You'll see the way out because you're looking for it and you don't stop until you find.

It's wonderfully cold here in my wood-plank-floor bungalow in very-North Florida. I couldn't be happier to be TKO'd (Frankenstein or not, lol) in such a cozy, artsy space. Big hugs to all loved ones in this battle, especially @India who has lifted me up day by day with luminous pictures and thoughts.

Happy Winter Everyone,

Catherine

intothewoods: help converting Provigil / modafinil to liquid for slow taper

Recommended Posts

intothewoods

Link to comment

Top Posters In This Topic

Top Posters In This Topic

Popular Posts

Giulietta

India

composter

India

Link to comment

intothewoods

Link to comment

composter

Link to comment

Giulietta

Link to comment

intothewoods

Link to comment

Giulietta

Link to comment

Altostrata

Link to comment

intothewoods

Link to comment

Altostrata

Link to comment

Rhiannon

Link to comment

intothewoods

Link to comment

India

Link to comment

intothewoods

Link to comment

Giulietta

Link to comment

Rhiannon

Link to comment

intothewoods

Link to comment

intothewoods

Link to comment

Giulietta

Link to comment

Giulietta

Link to comment

Gridley

Link to comment

intothewoods

Link to comment

intothewoods

Link to comment

Rhiannon

Link to comment

intothewoods

Link to comment

Gridley

Link to comment

intothewoods

Link to comment

Rhiannon

Link to comment

India

Link to comment

intothewoods

Link to comment

Rhiannon

Link to comment

intothewoods

Link to comment

intothewoods

Link to comment

Onmyway

Link to comment

Giulietta

Link to comment

intothewoods

Link to comment