Giulietta

[Cocopuffz17]

11 minutes ago, Guilietta said:

I found this link -https://gundrymd.com/plant-paradox-shopping-list/

 

A year ago I quit sugar (although it has been creeping back and will be expunged (again) starting today).

 

Do you have trouble with 72% cocoa?  It still has a lot of sugar - and 72% gives me the shakes - even if I have 1 oz.

 

Thats great, I like your mindset! I have only tried 75% once and didn’t notice too much of a reaction from it. All the other days I take bakers chocolate( zero sugar and 100% cacao) 1 oz daily. It’s bitter, no sweet taste because no sugar. But I eat for health not taste anymore and when I changed that in my mind my life changed. 

[Giulietta]

10 minutes ago, Cocopuffz17 said:

I have only tried 75% once and didn’t notice too much of a reaction from it. All the other days I take bakers chocolate( zero sugar and 100% cacao) 1 oz daily

 

Interesting idea on the baker's chocolate! For me it is that it has been very activating - and I have tried on a few occasions. I will try the baker's chocolate - maybe shred some on yogurt...?

 

Have a nice one and thanks for the suggestions!

[Cocopuffz17]

40 minutes ago, Guilietta said:

 

Interesting idea on the baker's chocolate! For me it is that it has been very activating - and I have tried on a few occasions. I will try the baker's chocolate - maybe shred some on yogurt...?

 

Have a nice one and thanks for the suggestions!

That sounds good! No problem! Everyday that passes is one day closer to being fully healed ! 

[Giulietta]

Copied from thread with Tom re:  BrassMonkey taper:

https://www.survivingantidepressants.org/topic/17671-the-brassmonkey-slide-method-of-micro-tapering/page/2/?tab=comments#comment-451843

 

What do you do when you are down to 1 mg (5 beads)? These beads are enteric coated and cannot be crushed (dulox/cymbalta).

 

The average capsule has 100 beads/capsule - so:

 

1 mg = 5 beads

.8 = 4 beads

.6 = 3 beads

.4 = 2 beads

.2 = 1 beads

and finally zilch!

 

The end of a taper is where it can get tricky, as you are seeing.  Because of the very small amounts we are dealing with and in this case the predetermined size of the beads, the last few reductions will end up being at a higher percentage than we would like.  But it can't be helped.  At the end of my taper I was having to visually divide a small pile of powder so I ended up with reductions of 25 and 50 percent.  It was all the scales would allow me to do.

 

It looks like reducing by one bead every six weeks is going to be the best option.  I would play it by ear and go slowly maybe extending the hold by several weeks depending on how I felt.

 

Thanks. I had wondered how long one would hold on a single bead. So if I am at .8 mg now - I am at 24 weeks ...1/2 year?  Did I calculate wrongly based on about 100 beads per 20 mg capsule?

 

That looks right.  100 / 20 = 5 so if 5 beads contains 1mgai that would be correct. 

 

If you just started at .8mgai then yes it will take a minimum of 24 weeks to get to the jump off point.  That is assuming that everything goes smoothly and you don't do any extra hold time.  Because each of your reductions will get progressively bigger, you just did 20%, the next would be 25%, then 33%, 50% and finally 100%, it is very important to listen to your body and watch how you react to each reduction.  You may need to do longer holds each time.

[Rhiannon]

Hi G, sorry I have been away and not answered your question for so many days! I was out of town, then a good friend was in the hospital, then I got sick, so I've been off the computer for a bit.

 

•  

Hypothetical - .9 mg (+/- 5%)?

• Assumption:  I am swallowing what I believe is 9 mg of drug.
• About 90% of the drug is released in an acid environment if the enteric coated beads are damaged - in a lab setting. I don't know how this differs in a human subject.    This is in the apple sauce article in cymbalta tapering on SA.
• Assumption: ~10% of my duloxetine dose survived
• The lab reference range is 60-120 and Lilly PI's recommended dosing is 60 mg/day up to 120 mg/day. 
• Assumption:  60 mg = 60 ng/mL, thus 1 mg = 1 ng/mL
• My test result indicates I am between 0 and 10 ng/mL - and .9 ng/mL fits in that range.

 

************************

Duloxetine decomposition - From Lilly's PI -

• "In extremely acidic conditions, cymbalta, unprotected by enteric coating, may undergo hydrolysis to form naphthol."  I don't know if if this is all of the drug or a portion of it  (could this be the 90% like the apple sauce article?). Napthol is a chemical compound 'used chiefly in dyes, drugs, perfumes, and insecticides.' 😳
• If 100% of the drug breaks down into napthol - then maybe my lab result is zero.

Depending on the likely outcome - or your judgment - this comes to taking  0 beads or as many as  5 beads a day.

 

I really can't assess how much of the drug you have been getting. I'm sorry. I just don't have enough information and I don't want to pretend like I do.

 

I don't think your test result of <5 is anything you can use to tell you reliably how much you are getting, unfortunately.  The only thing I can say about that is that it does NOT mean that you CT'd the drug completely or that you don't have any at all in your blood. On the other hand, it doesn't mean that you DO have any necessarily. It just means the testing equipment they used can't measure accurately at that really low level.

 

I really wish I could give you the information and answers you want, and I'm so angry that medicine and doctors aren't able to give you that info. They should never give these drugs to people if they can't help them taper off.

 

Have you asked the mod team and/or people who have worked with Cymbalta before, about what number of beads you should start with? What have they suggested? Has Alto weighed in? Is there a moderator who is good with Cymbalta knowledge? 

 

In my judgment the thing to do at this point is to see what Alto thinks about what number of beads you should try to switch to. She has vastly more knowledge than I do about Cymbalta and about ADs in general. Then if it were me I would pick a number, probably on the lower end of the options, and just give it a try, and keep track daily of symptoms and consult with the mods to help me see if there's any obvious pattern that says maybe I have overdone it or underdone it. 

 

I am so, so sorry I can't offer you more. I know you just want some guidance, and you definitely deserve it, and it's f'd up beyond description that you were put on this drug and put into this position. I am so sorry.

 

--Rhiannon

 

 

 

 

[Giulietta]

Dear Rhiannon,

 

I am terribly sorry that you and your friend have been sick - and with the travel - so much anxiety for you.  You have my sympathy and empathy.  💗

 

Do you think that feeling unwell was related to your reinstatement? 

 

I appreciate your saying that you are not able to provide me with any more concrete information than you already have. Having your opinion about what you would do if you were me in my untenable situation is helpful. 

 

45 minutes ago, Rhiannon said:

In my judgment the thing to do at this point is to see what Alto thinks about what number of beads you should try to switch to. She has vastly more knowledge than I do about Cymbalta

 

I got the impression from Alto that while I was still on liquid (even trying to transfer) my case is a futile one. 

 

Asking the mods who have worked with cymbalta survivors for their input on what beads to start with - as compared with two small dosages of an instant/short-term release form is a great one. That you for the suggestion.

 

1 hour ago, Rhiannon said:

The only thing I can say about that is that it does NOT mean that you CT'd the drug completely or that you don't have any at all in your blood. On the other hand, it doesn't mean that you DO have any necessarily.

 

Yes. Something else I just thought of - is that the lab value may vary from dose to dose - given inconsistencies with liquid dosing - particulary in my maddening situation.

 

1 hour ago, Rhiannon said:

I know you just want some guidance, and you definitely deserve it,

 

Thank you - we all need guidance - and I find a beacon of light here on SA. Our journeys getting here have been different from one another's - but we were all wronged by the same self-perpetuating system.

 

Hugs and thanks  💗🤗 - maybe you can advise me on my beads when I get onto that. Either way I'll keep you posted.

 

Giuilietta

 

 

 

 

[Giulietta]

Copied here from message to Gridley:

 

"Is there someone knowledgeable on cymbalta/duloxetine? I am trying to figure out my current dose (you may recall I was sold a liquid) - and I have some information, albeit limited.

 

I want to 'minimize my grief' and exacerbate the damage to myself now or down the road.  I have made some assumptions about where I might be - but need some common sense and wisdom and help with what to do next. I am really apprehensive about what to do next.

 

I would appreciate any guidance/direction".

[Gridley]

Copied here from message to Giuiletta:

 

I have been following your situation.  Brassmonkey laid out a bead list,  perhaps five, with the corresponding milligrams.  It that the range you are looking at in trying to decide where to make the switch to beads from liquid?  Am I correct that this is what you want to do?

 

I know you've done everything possible to try to see where you are with the liquid, with little if any success.  Even Rhi with her wisdom can't tell you hw much if any cymbalta you're getting.  

 

If you'd answer my question above -- or tell me what your options are in terms of making a stab of a guess of how many bead to take (if indeed that is your plan), we can work from there.  I'm afraid it will be pure guesswork.  I'm also wondering whether a crossover from the potency-unknown liquid to bead would be beneficial or not.  Anyway, fill me in on where you stand and what your options are and we can proceed from there.

[Giulietta]

New (to me) about cymbalta:

 

"Duloxetine crosses the blood-brain barrier and collects in the cerebral cortex at a higher concentration than the plasma."

 

I wonder if this/  how this correlates with the total amount of drug in your system. 

[Rosetta]

Thank you for your sweet notes on my thread.  This condition gets so lonely.  I hope you are doing ok.  Just knowing you have a real syndrome that other people are experiencing can help.  There are so many people who think it's all in our heads, but it is not. S.A. is invaluable because of that element - validation when doctors are in denial of what they have done to us.  Loneliness is one of my mental symptoms.  Neuro-loneliness.  Thanks for dropping by my thread and making me feel less alone.  -Rosetta

[Giulietta]

Hi Gridley.

 

Thank you for following my situation. Rhi with her lab analyzer expertise was hugely helpful as have the entire team. I am in a very unfortunate situation. 😕 

 

13 minutes ago, Gridley said:

Brassmonkey laid out a bead list,  perhaps five, with the corresponding milligrams.  It that the range you are looking at in trying to decide where to make the switch to beads from liquid?

 

Yes I believe beads are the way to go - see my pros and cons and maybe it will help clarify.  

I think my actual dose may be around .75 mg  based on what I am currently (7.5 mg) taking with my syringe, the applesauce article and my lab results.

 

23 minutes ago, Gridley said:

whether a crossover from the potency-unknown liquid to bead would be beneficial or not.

 

My side effects are mostly tolerable. That being said - below are my thoughts re: pros and cons. 

 

My initial (pro) thought about crossingover to beads has been that as my dose gets closer to zero would a single daily extended release be better (instead of two immediate release dosages). This may be far fetched.

 

Pros of crossover:

• After explaining to the compounding pharmacy the error of their ways  - they may not fill the script - or sell me the 'right' product.   🤔
• MD and I discussed beads moving forward after my last appointment
• I'll get a known dose.
• No napthol in my gut.
• SA staff can perhaps help me navigate the next (x) months

Cons of crossover:

• I could be at 0
• If I am at 0 - would even one bead (.2 mg)  be damaging?  No one wants worse or prolonged WD symptoms. 
• Unknown impact (unknown to me) of crossing over from 2 immediate release to one extended release dose.

I know I'm a case of n=1 so we'll some guesswork is involved even though no one likes guesswork.

 

Your thoughts and help very much appreciated.

 

Thank you -

[Giulietta]

Dear @Rosetta

 

I was happy to see your post today - that you felt crummy this week. On the positive side - you were not in pain, dystosnia is better and you are overall doing better than a year ago. 

 

This can be very lonely - and I am glad to be making a few friends on SA. I am not able/comfortable to tell most people I know about my struggle to be free of cymbalta (and Lilly!)- and it has ruled my life since last fall.  I can't tell people why I have not been able to do something because of medication issues. Who knows what they must think. I feel terrible like I have let them down.

 

There is in an expression - something like 'don't judge me until you have walked in my shoes.'

 

MDs don't get WD and prolonged recoveries affecting so many of us - as well as the destructive symptoms and issues it may leave in its wake.

 

My first (and last) meeting with a very condescending neurologist ended with our discussion of my goal to rid myself of psych meds.  I was having a bad afternoon with symptoms -  tremors, anxiety,  etc. and I was trying to explain what was happening to me. She said that the physical symptoms could be horrific and could last for 3 months after stopping (!!!!). She said my situation ' was about quality of life and maybe I should just stay on the medication.' I have been on clonazepam for years - courtesy of a reckless MD - and she said that I may never come off that. I was stunned. I won't be seeing her again.

 

Hopefully you will be off to dreamland and get a good night's sleep! 😴

 

Hugs,

 

Giulietta 💗

 

 

[Gridley]

3 hours ago, Guilietta said:

Your thoughts and help very much appreciated.

 

I will work on this tomorrow and see what we can come up with.

 

I had a window day this afternoon.  Our oldest Ecuadorian friend came up for a visit.  Usually I'm not game for a lot socializing, but we have the same sense of humor and the three-hour visit visit was full of laughter.  

[Rhiannon]

Hello G--

 

How are you doing?

 

 

Do you have any further thoughts or plans about transitioning to beads?

 

Nothing much to say, just wanted to check in, I have some busy days coming up and may not get back here much.

 

Hugs--

Rhi

[Gridley]

 

17 hours ago, Guilietta said:

I think my actual dose may be around .75 mg  based on what I am currently (7.5 mg) taking with my syringe, the applesauce article and my lab results.

 

 

We are dealing with unknowns (in fact, unknowables) here, so it's going to have to be a best guess.  It seems to me that a crossover is better than continuing with the liquid for the pro reasons you stated.  The cons have merit, but you seem to believe in the veracity of the pros more.  With the beads you will be dealing with a known quantity and can taper accordingly.  With the liquid you continue to flounder with no guidance how to taper to zero.  That seems to me to be unsupportable.

 

So it's a matter of deciding the dose.  The goal obviously is to match what you're taking now.  Under the principles of reinstatement (which this isn't but it's the closest analogy I know), you would start with a very small dosage and work up from there if necessary.  The downside of this is if you really are taking 7.5, it would be a very large drop and you'd be playing catch-up.

 

On the other hand, if you're actually near zero and "updose" to 7.5, it could be destabilizing.

 

Another approach would be to split the difference and take .4mg beads, but this for some reason doesn't;t feel right to me.  I mention it just as another option.

 

I think it has to come down to how comfortable you feel with analysis that brought you to believe you're at 7.5. I think you're going have to "go inside" and see what dose feels right to you.

 

Regarding one extended release vs. two regular release, it would be a question of which would be easier to taper. 

 

I hope this is of some help.

 

Gridley

 

 

 

 

 

 

 

 

 

[Giulietta]

Hello @Rhiannon and @Gridley 

 

Thank you for your posts! I am doing OK and getting closer to a decision on where to start with beads thanks to you both (and others who weighed in too).    I am really grateful for your work on this - and your analysis and recommendations are important things I had not considered. Thank you.

 

I have spent much on this morning on SA - so will think more about this issue later and respond to dear Erell later as well.

 

Giuilietta

 

[Giulietta]

15 hours ago, Gridley said:

Usually I'm not game for a lot socializing, but we have the same sense of humor and the three-hour visit visit was full of laughter.

 

Hooray! A window in an afternoon and enjoyed an afternoon with a humorous friend.  Three hours is a long time to spend in the company of anothe. I wonder if you may exhausted today. A little bit of socializing goes a long way with me.

 

I hope you are feeling well today. And again - thank you for your time and thoughts on my behalf.

 

I need to find a winter coat - somethign that may necessitate going to the mall - and I have put this off until the last minute. Shopping malls are generally  overwhelming for me. Hopeofully I'll post that I did get a coat and get to the mall.

 

Be well,

 

Giuilietta

 

 

 

[Gridley]

32 minutes ago, Guilietta said:

a humorous friend. 

Three hours was a bit beyond my limit, but it was a good distraction.  We laughed about old times together when I first got here 8 years ago.

 

Good luck at the mall.  We have some down here but not in our tiny village.  We just took the dogs for a little walk, and now my wife is up feeding the burros some bananas and carrots.  We're about to get into the rainy season here so their pasture will soon be full of fresh green grass.

[Giulietta]

I didn't make it to the mall - decided to look online instead. The local discount store didn't have many options. 😕 

 

It sounds like you enjoyed a peaceful day after yesterday's long visit and live in an idyllic spot.

 

 

[Giulietta]

Quick update:

 

A lot of anxiety, tremors, jitters and feels like my heart is beating rapidly this afternoon/evening since 5 p.m. GI upset. I don't know what wind this blew in on! I know it is better to let the anxiety in like an unwelcome guest, ignore it (I haven't learned to do this) and it will leave.  There is general anxiety - and then there is this. I felt this way about a week ago.

 

I don't know if there are 'too many' things going on at once for me, cumulative ruminations - or if it is 'just neurotransmitters.'

 

I am another step closer to moving to beads and will be glad once there and 'settled.'  This is an overall positive although any change brings tension.

 

I would like to be able to be more easy going about this (and life in general). It's easier to  give advice than apply one's own to one's self. 

 

There is a comedy on TV now and church tomorrow. And my weighted blanket.   There are a few happy thoughts.

 

 

 

[mustafa]

7 minutes ago, Guilietta said:

Quick update:

 

A lot of anxiety, tremors, jitters and feels like my heart is beating rapidly this afternoon/evening since 5 p.m. GI upset. I don't know what wind this blew in on! I know it is better to let the anxiety in like an unwelcome guest, ignore it (I haven't learned to do this) and it will leave.  There is general anxiety - and then there is this. I felt this way about a week ago.

 

I don't know if there are 'too many' things going on at once for me, cumulative ruminations - or if it is 'just neurotransmitters.'

 

I am another step closer to moving to beads and will be glad once there and 'settled.'  This is an overall positive although any change brings tension.

 

I would like to be able to be more easy going about this (and life in general). It's easier to  give advice than apply one's own to one's self. 

 

There is a comedy on TV now and church tomorrow. And my weighted blanket.   There are a few happy thoughts.

 

 

 

Hello gulietta, I think it is the behaviour of waves; anxiety can be up and down until it is settled.

Watch your film on TV and go to church peacefully.

What is the film you watch?🤔

[Gridley]

16 minutes ago, Guilietta said:

I am another step closer to moving to beads and will be glad once there and 'settled.' 

 

You're in a very unsettled transitional phase, and it's natural that things are acting up.  It's normal to be scared of the change.

A good technique is to assume it will go great.

 

It's impossible to know what's causing what.  That's okay.  This stuff comes and goes.  Sometimes it doesn't go as quickly as we'd like.  

 

Enjoy your comedy, take solace from your church tomorrow and relax under your weighted blanket.

 

 

[Giulietta]

On 10/12/2019 at 8:10 PM, mustafa said:

Hello gulietta, I think it is the behaviour of waves; anxiety can be up and down until it is settled.

 

Thank you, Mustafa. I think you must be right. I experienced more anxiety and agitation this afternoon. The program is 'Last Man Standing' and is very funny. Laughter, they say, is the best medicine.

 

On 10/12/2019 at 8:14 PM, Gridley said:

A good technique is to assume it will go great.

 

This is wise approach. I was telling myself that I may be catastrophizing a bit - one of the nasty little habits of negative thinking I am working to rid myself of.

 

Some WD symptoms are much easier to tolerate than high levels of anxiety and tremors. This afternoon I had less of these, something for which I am grateful.

 

Thanks to you both for your kind words of support. I really do appreciate it.

 

[Giulietta]

Update on morning on 10/15

 

General anxiety (and insomnia)- mostly in afternoon. Concerned about situations I can't control and anxiety about situations I may be able to control but not without stress to me and backlash from family and my future.  Feel I am not using my time wisely, not meeting targets, and this is upsetting. I blame myself (who else is there?).

Anxiety provoked also by being on SA. Like many people here - I wonder about my future - even though I shoudl be positive.

 

• 10/11: Auras (these often manifest around anxiety - but not always) around 3. Tingling/pins and needs in limbs. Stress around dulox. Been on SA this afternoon.
• 10/12: Anxiety late afternoon/early evening. Been on SA this afternoon.
• 10/13: Bad anxiety and tremors 4.30 - > 8 p.m. Improved around 9 p.m. Been on SA this afternoon.
• 10/14: Irritable and in driven mood to accomlish a lot of goals. Anxiety > 4 p.m. Been on SA. MD returns comment re: my questions around duloxetine. I am flummoxed by his response so am rethinking my next steps. And round and round.

 

 MD response.

• Updosing: MD has done an about face so far as I can interpret about updosing. Thought is that  I am generally feeling well (?) we shoudl not increase my dose (never mind determining what I may be  getting). If there is a significant worsening of my mood we should consider reinstatement or use of another medication.
• Labs: Since my level is so small <0-5 ng/ml - it is very unlikely to be clinically relevant.

My proposed actions:

10/15:  I will start reducing liquid today and see how I respond for 3 days. A little anxiety about this (of course) which has passed. If I am not feeling OK - I can take a few beads out of  20 mg capsules from December 2018 and plan per BrassMonkey. I plan not be on SA in the afternoon even if I want to see how this lower dose might affect me.

 

Proposed Dosage change will be from a daily total 7.5 (in reality could be ~.75 mg) split (from 10/2 to 10/15) to daily total 6 mg (possibly .6 mg) split.

 

Note to self: when labs were performed which resulted in <0-5 ng/ml result, I had taken 4.5 mg 3.5 hours prior to the test. Who knows if this is useful.

 

Ongoing concern about managing care for elderly parents. Not working and frustrated with myself fo rnot approaching this higher priority.  Trying to sort out this medication bit and am getting closer - with special thanks to @Rhiannon and @Gridley

 

Hugs and thanks to all.

 

Thinking of @Gridley and sending positive thoughts and prayers for swift resolution of unrest.

[AuntieBea]

Hi Guilietta,

 

I'm just checking in with you here to say hello and let you know I am thinking of you. It was so kind of you to reach out to me the other day and offer encouragement. It sounds like you are struggling with a really complicated situation yourself. I just wrote a long response to you on my thread, but I totally understand that you may not be up to reading all that at the moment.

 

Please take good care of yourself. We will all heal in time...I have to believe that. It is just taking such a painfully long time. Meanwhile, I am forever grateful for this forum and everyone here. I’ll come by again to see how you’re doing....

 

AuntieBea

 

 

 

[Giulietta]

Thank you for stopping by! I'm grateful for SA - the mods and all fellow survivors. 

 

We are all trying to do whatever we can to feel better, not worse. 🤕 I checked on this afternoon and shouldnot have. Now I am here at 7.30 pm. 

 

I posted a link to a funny video on your page.

[Rhiannon]

Hello G, just checking in.

 

It does sound like you are improving, settling down a bit in symptoms. Let us know what happens as you decrease your liquid. 

 

I also find myself frustrated about not getting more done and not prioritizing things I know I need to attend to. I think that is partly withdrawal, but some of it is just modern life. There is always more we could be doing, and we imagine that other people get a lot more done than we do. Try to remember that just taking care of yourself is enough for now. That's the best thing you can do for your parents, too.

 

Keep us posted how it goes.

[Giulietta]

Hello Rhiannon,

 

Thank you for your checking on me and kind thoughts and encouragement about being more productive.   I am trying not to let the WD, etc. take so much time and energy.  I am allowing it to manage me.

 

2 hours ago, Rhiannon said:

Let us know what happens as you decrease your liquid. 

 

This afternoon has been very unpleasant since 2 pm. It has additional symptoms including  jitteriness,  don't feel right, upper gut pain and sensations,  chills and flushing, tinnitus, not thinking so clearly, what feels like heart palpitations and  greater anxiety. Jumpy.   🤕  I have experienced this over the past few days as well.

 

Since 10/2 I dropped a total of 33% of the magic potion.

 

I looked at my symptoms during '9' mg (which was more than 30 days) and I had symptoms every day of one intensity or another. Is this part of prolonged withdrawal? 

 

Should one stay at a certain dose (i.e., '9' mg) until the WD symptoms disappear before making the next decrease?

 

I think I should increase tomorrow (liquid) but not sure to what.

 

Thanks,

G. 😊

 

[Rosetta]

Guiletta,

Hi there.  If you had been in an accident and had a traumatic brain injury other people would understand that you are disabled right now.  Just because they don't understand is no reason to treat yourself poorly.  Try to do some of the things such as getting sun, walking, taking not showers or baths, Epsom salt baths, that you need to.  Otherwise "give yourself a break" from self blaming.  This is not your fault in any way.  Believe me.  I have been through this long enough to know that nothing I did --knowingly -- caused this to happen.  Those should not have been prescribed to anyone.  Think of yourself as a person with a head injury.  Do the best you would expect someone who did have that injury to do.  You can't do better right now, but the good news is someday you will!  I am proof.  You will get off the drugs.  Do not let anyone tell you you can't, but also do not let anyone tell you to taper too fast.

 

I hope you have some peaceful time today.

Rosetta

[Giulietta]

Hello Rosetta,

 

Thank you for the kind and wise words, particularly as you are coping with your challenges in Spain.

 

12 hours ago, Rosetta said:

Just because they don't understand is no reason to treat yourself poorly. 

It is hard not to succumb to self-blame when you have high expectations for yourself. It is hard to be around people all the time who do not understand the impact of WD symptoms and who may also have health issues.

 

I honestly am disgusted with my inability to make decisions that will allow me to move forward on starting my dose to start beads.  I want to get on with life in the best way I can and the bead dose has to be resolved first and soon. My magic potion (which is a secret!) runs out in 16 days.

 

Well - I need to pull some thoughts together about dosage possibilities and post separately.

 

12 hours ago, Rosetta said:

I hope you have some peaceful time today.

 

Thank you - I hope you did as well. Visitors from out of state were by - that was a special treat and change of pace.

 

I look forward to the end of the day when I can crawl under the weighted blanket and put on the black out eye mask. And hopefully fall asleep.

 

Giuilietta

[Rhiannon]

Hello G, just checking in. I see you're still working on figuring out what you're going to do with beads. Keep me posted.

 

As  you so often say to others-- we are here, you're not alone, whatever you decide to do you will have support here. We will get you through it, whatever happens. 

[Giulietta]

Hello Rhiannon

 

Thank you for checking on me.  I hope you are well. 

 

I am almost there on beads. Been working on the post, doing more thinking, etc. since Thursday. Embarrassing that it takes me so long.

 

If I don't get to finish post today - I will get out tomorrow morning. I am looking at between .2 and .8. Maybe .4 and .8?

 

Not to be ignoring you. Hope you are enjoying today.  I have to run.

 

Giuilietta

[Giulietta]

Dear Rhiannon,

 

Thank you for checking in on me. I hope you are well. 

 

This is lengthy and Ihope clear. Part of the information here is for my record. Would you please let me knkow your thoughts.

 

Based on the totality of everything (moreor less below) -   I may getting be .2 mg, .4 mg or maybe .6 mg -    @Gridley suggested this and  I didn't comprehend the meaning at the time 😕    I understand from you and everyone that I should start (low), wait a few days and adjust as needed.  

 

I don't know how low to start - based on % drug lost. I (and you I think) think I am getting some drug.

 

Here are dosages for % lost I think:

 

.8 mg = 90% lost (too high?)

.6 mg = 95% lost (maybe also too high)

.4  mg = 96-97% lost   - for generic dulox assuming 100 beads per capsule - this is 2 beads

.2 mg = 98-99% lost - for generic dulox assuming 100 beads per capsule - this is 2 beads

 

I have at last nearly reached a starting dose for beads - whether it will be called a reinstatement or a crossover. I had to turn this over and over in my head to get this far (and organized). I hope this is clear and somewhat easy to follow.

 

If I am getting a small bit of medication - I don't want to jump to 0 from an unknowable dose.  Thus - I don't want to toss the liquid. Declining in dose may have caused increased symptoms. I have been reading and analyzing posts and other threads on SA since Thursday to get comfortable about where to start with beads.  🙄

 

To the best of my ability - I understand from comments from everyone and analysis that if I am absorbing any drug from the 7.5 mg (2.5 ml) - I may be getting anywhere from .1 and .75 mg. This .1 - .75 mg   is the remainder of drug after 90% and 99% is destroyed in the GI. However - given that I am taking immediate release short-acting liquid - I may losing closer to 96-99%.

 

What @brassmonkey said in explicit terms to me clicked. I had been getting basically no medicine since switching to liquid. If symptoms were intolerable  1 mg reinstatement may be O. (😕 ). 

 

BrassMonkey didn't say I was getting no drug. Thanks to your analysis of the labs - it is unknowable if I am 0 based on the device. My symptom log suggests I may be getting some medication. I understood that this is your sense too.

 

thank you and hugs and hope you are feeling well

 

Giuilietta

[Altostrata]

On 10/10/2019 at 11:03 AM, Guilietta said:

I got the impression from Alto that while I was still on liquid (even trying to transfer) my case is a futile one. 

 

I didn't say it was futile, I said your guess is as good as mine when it comes to estimating an equivalent number of Cymbalta beads.

 

I see you are working on your estimate.

[Giulietta]

Futililty was my impression and my word. I understood  there was no experience for liquid cymbalta (long after I started taking it). I really needed help to convert to beads and had no idea how to figure this out, and even where to start.   Without the leadership and ongoing support of everyone on this site - I would truly be lost. 

 

I am still working (obsessing?) on estimating the beads.  😕

 

I am leaning to starting at 2 beads (.4 mg) - assuming avg 100 beads in a 20 mg capsule.  This assumes ~97-98% of drug is destroyed. Any input is appreciated.

• .2 mg = 1 bead if approx 99% lost
• .4 mg - 2 beads if approx 97-98% lost
• .6 mg - 3 beads if approx 95 or 96% lost
• .8 mg - 4 beads if at ~89% to 90% (think this may be too high)

 

[Gridley]

2 minutes ago, Guilietta said:

 

I am leaning to starting at 2 beads (.4 mg)

 

This seems to be a good conservative approach.  

 

A couple of days before you make the switch would be a good time to start posting your daily symptom pattern. Keep daily notes on paper about your symptoms, when you take the drug and its dosage. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. Then post daily.  This will help you see how your reinstatement/crossover (it's really a hybrid) is going.  Here's an example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

Gridley