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

[Giulietta]

6 minutes ago, intothewoods said:

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 may be stupid, but why don't they use the same inactive ingredients? The same exact formula?

 

Even if there are different suppliers for the 'same' generic drug - they all get paid.

 

I believe that each generic drug company has a patent on its generic drug (for example, pars makes lamotrigine ER and so does actavis - so they each have a patent) and I don't know why. This is why I believe last summer clonazepam was hard to obtain: two manufactuers for 'business reasons' discontinued production (the patent expired?).

 

13 minutes ago, intothewoods said:

but my doctor kindly prescribed a year's worth of the ADs and the pharmacist filled 9 months' worth

 

My MD looked at me in dismay and I wondered whether I would get the script. My real logic for the 90 days extra supply is my concern over the supply chain. The manufacturing of one drug - as you all know - involves several countries. For some reason it costs companies less. Not sure I understand why. I would like to get a 90 days' back up of everything.  

 

18 minutes ago, intothewoods said:

You'll see the way out because you're looking for it and you don't stop until you find. 

 

Thank you for the positivity.  

 

19 minutes ago, intothewoods said:

It's wonderfully cold here in my wood-plank-floor bungalow in very-North Florida.

 

What is the temp? What can you do for heat?

 

Horribly cold here. Glad to have central heating.  😬

 

Be well and stay warm,

Hugs,

G.

 

[Gridley]

12 hours ago, intothewoods said:

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. 

 

This is great information, @Onmyway and @intothewoods.I couldn't get my generic Ativan here any more and had to switch to name brand.  I'd have thought the name brand would've been stronger but the opposite was the case and I started getting some very unpleasant symptoms.  Using pure guesswork, I upped my dose from 0.5 X 3 to 0.625 and things calmed down.

 

So true that these small variances might not matter to the "undrugged" but they make all the difference to us. 

 

[Onmyway]

13 hours ago, Guilietta said:

 

I may be stupid, but why don't they use the same inactive ingredients? The same exact formula?

 

Even if there are different suppliers for the 'same' generic drug - they all get paid.

 

I believe that each generic drug company has a patent on its generic drug (for example, pars makes lamotrigine ER and so does actavis - so they each have a patent) and I don't know why. This is why I believe last summer clonazepam was hard to obtain: two manufactuers for 'business reasons' discontinued production (the patent expired?).

Hi Giulietta,

I don't know for sure but I don't think a patent is the reason. You would usually patent only if you can get a higher price for it which with generics you wouldn't. Then it's really easy to go around these patents by slightly changing the ratio of some inactive chemicals so why bother. I think the bigger reason is that these are actually never discIosed publicly sort of like Coke and Pepsi. They both produce colas but they're slightly different. The original inventor of the drug only discloses the formula for the active ingredient because patenting requires disclosure. 

 

For ER or XR they may need patents because the part that makes it ER or XR may also be novel and active.

 

The business reasons are usually that generics are not very profitable as there are so many manufacturers. Often companies will exit, prices will go up again, then they'll re-enter etc. Often there will be supply chain issues and they'll disappear for a while.

[Onmyway]

1 hour ago, Gridley said:

So true that these small variances might not matter to the "undrugged" but they make all the difference to us. 

I think this is also greater information about our particular case as in the level of our reaction to a change like this is informative of our level of sensitization personally. Even in WD one may react strongly while another may not. So I think @intotgewoods you can use this to inform your taper going down, though this data is contaminated by the change in Elavil as well. 

 

@Gridley, just wanted to say that I really appreciate your calm and supportive moderating style. Thank you for all that you do! 

[intothewoods]

40 minutes ago, Onmyway said:

@Gridley just wanted to say that I really appreciate your calm and supportive moderating style. Thank you for all that you do! 

 

I fully concur! 

[Gridley]

1 hour ago, Onmyway said:

@Gridley, just wanted to say that I really appreciate your calm and supportive moderating style. Thank you for all that you do! 

 

1 hour ago, intothewoods said:

I fully concur! 

Thanks, I appreciate it.

[Giulietta]

3 hours ago, Onmyway said:

The business reasons are usually that generics are not very profitable as there are so many manufacturers. Often companies will exit, prices will go up again, then they'll re-enter etc.

 

Makes sense in many cases - supply and demand to keep the prices (profits)  stock holder and investors demands. 🤔

 

That being said - when I was trying to learn why lamotrigine ER costs $2400 for 90 days (from the pharmacy) and keeps increasing- I had wrongly assumed that lack of competition was the case. The pharmacy indicated there are hundreds if I recall correctly.  I was stunned until she read the names of more than 10 ....and I was disabused of my false pretentions.

 

@intothewoods I hope you stayed warm in your Bungalow.

 

@Gridley I would be lost without you.

[intothewoods]

19 minutes ago, Guilietta said:

 

@intothewoods I hope you stayed warm in your Bungalow.

 

I'm totally toasty, thank you Guilietta. I do have central heat but prefer a remote - controlled space heater (energy savings obviously). 

 

Looks like all of us Easterners are getting drenched the next two days. I do hope you can still get out as it helps so much. Tuesday I went to a nearby organic foods market, great prices and cool features like dim sum, sushi, and raw cheese bars (tiny fromagerie 🧀), and hung out in the cafe in between shopping. After so long in bed, it was like a vacation 😎.

 

Sending warm (and dry) hugs 🤗

[Gridley]

45 minutes ago, Guilietta said:

@Gridley I would be lost without you.

 

That's very kind, G.

[Onmyway]

On 12/13/2019 at 6:52 PM, Guilietta said:

That being said - when I was trying to learn why lamotrigine ER costs $2400 for 90 days (from the pharmacy) and keeps increasing- I had wrongly assumed that lack of competition was the case. The pharmacy indicated there are hundreds if I recall correctly.  I was stunned until she read the names of more than 10 ....and I was disabused of my false pretentions.

What you have to pay depends on a very complicated relationship between the the pharmacy itself, insurance providers, manufacturers. It's such a complicated thing that I don't think anybody understands it. For example the same generic in Europe costs cents on the dollar of what it costs in the US. Often because governments set prices but not only because of that.

[India]

On 12/13/2019 at 1:30 AM, intothewoods said:

 

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. 

 

 

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!

 

 

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

 

 

Beautiful to hear this Catherine. Will return soon. Much healing energy . 

[Carmie]

Hi Catherine, 

 

I know you’re in bunkering down mode but just wanted to say I hope you’re keeping rugged up and warm🧡

[Giulietta]

Hello Catherine

 

Just stopping by to say hello and wish you are having a good day and that I am thinking of you.  Thank you for your PM - haven't had a chance to reply yet.

 

I hope you are staying warm and comfortable in your charming bungalo and contining  to stabilize.

Hugs,

Giulietta

 

 

[Carmie]

Hi Catherine, 

 

I know you are still bunkered down in bed with CFS and akathisia. I’m so sorry that the akathisia has been so relentless. I’ve been there myself, as you know. It’s just awful and my heart goes out to you. 
 

If anyone else is reading this please feel free to leave a note here and a word of encouragement 🧡

[puthappinessfirst]

❤❤❤

[Stacy]

@intothewoods

Hi, Catherine! I'm sorry it's been so long since we last talked. I think about you all the time and especially now with all of this mess going on with Covid-19. I am still not familiar with navigating this site very well but it doesn't look like you have posted in awhile. I hope you are doing ok and not having a hard time getting your medicines right now with everything that's going on. Please check in with us and let us know you are ok. 

[Giulietta]

6 hours ago, Stacy said:

I hope you are doing ok and not having a hard time getting your medicines right now with everything that's going on. Please check in with us and let us know you are ok. 

 

Hello Catherine,

 

I do hope you are OK - have missed seeing your posts and been thinking of you. Covid-19 has turned the world upside down - and I hope you are able to get your meds without problem as Stacy mentioned. That has been a huge stressor for me.

 

I am trying to isolate myself (physically and from the news!) and hope this is over soon.

 

Big hug,

G.

 

 

 

 

[Altostrata]

Hello, @intothewoods, how are you doing?

[Stacy]

On 8/10/2020 at 3:38 PM, Altostrata said:

Hello, @intothewoods, how are you doing?

 

 

@Altostrata I am worried about her. 

[Altostrata]

Are you in touch?

[Stacy]

@Altostrata

 

I do have her number but didn't know if I should try to message her personally. I may try getting in touch with her tonight. I'm just concerned because I know she was already having a hard time and then the pandemic hit. She hasn't really been on here since then. 

[ChessieCat]

She last logged in 5th June this year.

 

Edited August 11, 2020 by ChessieCat

[Stacy]

Thank you, @ChessieCat.

[puthappinessfirst]

I heard from her via email today. 

[ChessieCat]

Thanks for letting us know.

[Stacy]

@puthappinessfirst

 

I'm glad to hear that. Thank you so much for letting us know. 

[Altostrata]

Please let her know we're thinking of her and would like to know how she's doing.

[Altostrata]

@intothewoods, how are you?

[intothewoods]

Hey Everyone,

 

Tuesday I read my thread for the first time in over two years. I had no idea you guys were checking on me ....I am touched, and thank you for your concern. I had reached a place where my brain couldn't bear to  think about ADWD, or anything more taxing than the weather. My accidental updose in 2019 with the amitriptyline after dropping too fast on two of my other four meds while pushing to finish an article and book on the travesty of psych med destruction while dealing with Chronic Fatigue Syndrome -- it made me do something for the first time in my life: Take a time out. The rewards have been tremendous. Healing is happening. 

 

Looking at my med signature, you won't see huge reductions (although there is hard-won tapering that's slowly increasing). I actually held my doses for 15 months. After six years of chaos, it was needed. Just as important was to let my brain go dormant and my body retire to bed. Peace was imperative, and always will be. A new friend in my frantic five decades, it is a gift from these drugs. I dove into taking them for CFS and now I slowly walk away with that prize.

 

My expectations had to change. Two years ago, I believed ADWD success meant stabilizing with more windows than waves, an overall relief from the acid trip and the terror, an abating of akathisia and morning cortisol. That has not happened for me. I rarely have a window, the akathisia is constant, and I still inhabit that nonhuman space we all know and desperately seek relief from. But it's okay and what I expect for now, while I'm still on substantial doses of two antidepressants and a 17-year-long benzo. As this drug burden lightens, my symptoms will lighten. They are lightening, albeit subtle. I've learned to look for the subtle. 

 

I have been able to reduce my Provigil, the topic of this thread, from 300 mg in 2016 to 31 mg in 2019 to 10.7 mg today. Sure, I thought it would be zero by now. I definitely tried -- we all hate poisoning ourselves, and paying big $ to do it (Provigil is expensive). But it wasn't possible so I keep drifting down while alternating it with reductions of my fluoxetine and amitriptyline. I've not touched the diazepam and had not intended to until I finished the Provigil. But now I think it's important to lower the whole burden,  the "accelerator" drugs along with the "brakes."  It's quite a puzzle. The amitriptyline is the most toxic -- I literally feel ill within an hour of taking it, then it ushers in sweats and tremors and, combined with the dementia-inducing diazepam, a kind of brutal pyschedelic dream night.

 

Meanwhile, there will be huge life stressors. I used to dread them, knowing they would likely interrupt my tapering and ramp up WD symptoms. But now I expect and accept them. Life is extra hard since Covid but even without a pandemic, we all face adversity in extreme. Friends and parents die, we have a new serious illness, we are forced to move to less ideal places because ADWD prevents work. My current basement apartment is in a wonderful location but has an upstairs neighbor who pounds his ancient wood floors/my ceiling round the clock. He is autistic, brilliant with numbers, but the hammering impact noise a few feet above my head and bed is a kind of torture for months. Sleep is fleeting and only with earplugs. Yet, I keep tapering ever slowly. There will always be something.

 

Something good unexpectedly happened in September: My sustained writing mind returned. For eight years, I've only been able to write in short bursts a few times a month. I lost my writing mind, which was always with me professionally for 30 years, in the drug onslaught. But in September, there in the laundromat loading a washing machine, I had sudden onset of sustainied writing brain. It was like a miracle, and I wrote on anything I could find -- phone, paper plates -- for five days. So now the mainstream story I pushed so hard for years ago has come naturally. The prose is mostly done, the research has a ways to go. Whether I can finish, time will tell. I refuse to stop tapering, or to give up my peace.

 

As I catch up with all of you, I offer huge congratulations to @ChessieCat for escaping the Pristiq. I am thrilled for you. 

 

I offer a hand to @Erell, whose endurance through similar trials as mine, of not "stabilizing" as soon as or as much as you hoped, is strengthening. Thank you for sharing your pain and journey so intimately. France is my favorite country and if I ever get back, perhaps we could meet for pain au chocolat? 

 

Take care everyone. 

 

Catherine 

 

 

 

 

[manymoretodays]

Hello intothewoods,

And thank you so much for your updating and news.

So happy you are writing!  Yay, hats and balloons.....celebration dance?

 

Although, I am sad that you are not where you had hoped or wished to be right now, I am so proud of you for soldiering on.

Especially for writing the piece above.  It's really well written.

And gives words to an experience, that is sometimes hard to get into concise words.

 

Best of all the healing vibes being sent,

L, P, H, and G,

mmt

 

[intothewoods]

A celebration dance for sure, @manymoretodays. Thank you for your kind words and support. It means a lot as you are, and have always been, a breath of fresh air. 

[ChessieCat]

On 1/7/2022 at 3:44 AM, intothewoods said:

Something good unexpectedly happened in September: My sustained writing mind returned.

 

That is so good to hear and I think it is a real sign of healing happening.  I had a similar thing happen when I got excited when I saw some whales unexpectedly whilst visiting someone who lived on the coast to view a car for sale.  That would have been at the end of 2017, 2 years after I started tapering and when I was down to 15mg (start dose 100g Pristiq).

 

On 1/7/2022 at 3:44 AM, intothewoods said:

I offer huge congratulations to @ChessieCat for escaping the Pristiq. I am thrilled for you. 

 

Thank you.  I think only others who have experienced something similar can truly understand the enormity of the achievement that getting off psychiatric drug/s actually is.

 

 

And thank you for returning to update us.  You have come a long way.  I wish you well.  Keep plodding.  Any reduction is heading in the right direction.

[intothewoods]

On 1/8/2022 at 2:34 AM, ChessieCat said:

I had a similar thing happen when I got excited when I saw some whales unexpectedly whilst visiting someone who lived on the coast to view a car for sale.  That would have been at the end of 2017, 2 years after I started tapering and when I was down to 15mg (start dose 100g Pristiq).

 

I love your experience with the whales - - it proved that even five years away from getting off the drug, your reductions released deep feelings. It gives me hope. 

 

 

On 1/8/2022 at 2:34 AM, ChessieCat said:

And thank you for returning to update us.  You have come a long way.  I wish you well.  Keep plodding.  Any reduction is heading in the right direction.

 

Thanks so much, Chessie. Without SA and all of you, I'd never have made it out at all. I will keep plodding and wish you the best, too. 

[Erell]

Hello @intothewoods, 

Thanks for taking the time to come here, it's good to hear from you.

Even if I am sad to know that the daily life remains difficult, I'm glad to hear that writing is back in your life and I thank you for sharing all this with us: your text is a masterly lesson of patience and acceptance, and I can only wish to follow your steps in this way.

I know how much this absolute necessity, almost physical, that these sensations stop can exhaust our very foggy minds. You have my support in this journey, and I hope that soon your careful reductions will bring you the relief you deserve.

Of course, I am already savoring the idea of offering you a pain au chocolat in front of the ocean ☀️🧡

 

[intothewoods]

Thank you for this @Erell. Your own words are eloquent and powerful, and propel me forward. We all go forward together. You're truly a gift to this lifesaving site.

 

On 1/17/2022 at 9:08 AM, Erell said:

Of course, I am already savoring the idea of offering you a pain au chocolat in front of the ocean

Ce sera un plaisir et un privilège pour moi 💜. 

[intothewoods]

Hello to everyone,

 

I wanted to update as so much has happened in 18 months, most of it wonderful changes yet I've hit a wall with tapering and having basic function outside of bed. I think it's just temporary and mostly trauma-induced but as we know, it all gets entangled in WD and I'm reaching for perspective.

 

In Spring, I moved from my native Florida of almost six decades to Vermont, where I worked over the years (including the winters  )and have always wanted to live. I absolutely love it here, love my neighbors, my apartment and my little urban neighborhood with mountain views. I have a primary doctor through the university who is a Cambridge graduate and who wholly understands ADWD (she's familiar with Mark Horowitz, Robert Whitaker and just read @Altostrata's splendid piece https://journals.sagepub.com/doi/full/10.1177/2045125321991274) and supports my water tapering while readily prescribing my four meds. Also through the university, a network of specialists who, amazingly, believe in and advocate for psych med reduction and elimination. Everything is documented after each doctor visit as they post notes on my electronic chart and to read time and again that "the patient is tapering using a water titration method that seems quite safe" and similar thoughts -- very liberating.

 

Especially since I've never stabilized on this polydrug regimen and can only reduce 1-2 percent of one med for two weeks or more. I truly believe this is because I've not had sustained, stable, independent housing since 2016 until now. I've moved six times and moved my elderly mother next door to me once, then helped her move out when she changed her mind the next day. She sold our Florida family ranch and things seemed hopeful but it was ultimately still very toxic. So last year, I applied to dozens of apartments in two states and was called for an interview in February here. But....even now, 1500 miles away, I'm legally required to make law enforcement decisions regarding a drug addict sibling usurping enormous $ from my mother. She was, as some of you know and from my thread, my lifelong closest friend and WD supporter but has sadly disowned me (part may be dementia) and last year, my father legally disowned me before he died of Covid.  I am beyond grateful to have an army of friends who moved my vehicle and belongings up here. In February, I got Covid despite three vaccines (caught it on a flight, my first plane trip in 20 years) and was severely sick, unable to climb my apartment stairs, for a month. 

 

Last month, my primary suggested that I hold my meds for a few months given the situation with my mom. Then she looked at me and said: "But you're going to taper, aren't you?" Ha ha. She was right and I was wrong to drop two days later. On Sept 9 I dropped two percent on my amitriptyline and had the initial drug-burden-reduction relief for 48 hours then plunged into the deepest horror, dread, DP, akathisia, disorientation .... all of it. I'm getting better but I'm getting frustrated because I'm still taking so many meds and still not off the Provigil although I'm down to 8.9 mg from 33.3 mg when I joined this site four years ago (and 300 mg that year). 

 

Yet I see members here struggling year after year with one med and especially the lower doses which we know are harder. It's astounding, the grip these toxins have on us, but I've learned to let it go even to the point of no longer pursuing mainstream publishing of this crisis. As I age, I see the heavier daily toll of the meds and am so, so glad to be in a supportive place where my body and brain can finally begin healing. In fact, I had so much more daily function and mental acuity after my April move. I was getting better until this last trauma with my family and the amitriptyline cut, albeit miniscule. 

 

I will write more and wasn't even intending to post but began reading recent posts from friends on here and am so glad many of you are progressing, fighting the fight, getting off these poisons -- and I was inspired. I hope to hang out with this great SA family more and be of support. Such a gift, this site.  

 

Happy Fall to all. It's quite a marvelous first foliage experience in New England.