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Bead Counting Now Or Later?


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#1 Ramona80

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Posted 10 April 2015 - 03:25 PM

March 31st - Doc had me drop from 60 mg to 40 mg. 

April 1st and 2nd - Terrible withdrawals

April 3rd - Doc put me back up to 50 mg of Cymbalta, plus added in 10 mg of Celexa. 

She said the new discontinuation schedule would be: 3 weeks at 50 mg, 3 weeks at 40 mg, and so on.

 

 

So it's been 1 week since then. The withdrawals aren't as bad as they were during the 20 mg. drop, but I have a headache and pain all over my body, especially my joints. I have no physical stamina. Doing anything physical results in me feeling shaky, weak, overheated (a sort of hot, nauseous feeling coming from my brain and branching down my body), getting some brain zaps (not too many, but a few here and there). As long as I'm pretty stationary, it's not too bad.

 

So 2 weeks from now, according to doctor's schedule, I would be moving down another 10 mg. of Cymbalta. If I decide to do bead counting instead, would I start that now, or wait until I'm not feeling the withdrawal symptoms I've been having? (Like, wait until things even out?)

 

If I do bead counting, could someone help me with what rate I'd do?


#2 thismoment

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Posted 10 April 2015 - 03:44 PM

Cse

Your doctor has never read the literature from Eli Lilly, the manufacturer: a slow wean; no steps in the regimen; no missed days; adjust dosage if strong symptoms are encountered-- either stop reducing or go back up. After you stabilize, continue weaning but at a slower rate.

I would consider weaning off from 50 mg at a rate of 1/2 of 1% per day (200 days), and make adjustments to keep the symptoms tolerable.

#3 Ericak

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Posted 10 April 2015 - 07:27 PM

How would one wean off of 20 mg to get no symptoms?

#4 TryinginFL

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Posted 10 April 2015 - 07:36 PM

Erica,

 

We need to know how many beads are in a capsule - yes, that means taking it apart and counting all of those little suckers in there!

 

One of our members, ThisMoment, is very good at working out a schedule but he will need to know the number of beads and then figure a percentage to keep you as comfortable as possible.  I'm sure that he will be online soon but please come back with the number first!

 

Hang in there - you will get through this! :)

 

P.S. Please see his above post to another member and it will give you an idea what we are dealing with...


#5 thismoment

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Posted 10 April 2015 - 08:46 PM

Ericak

 

After 5 years of exposure to Duloxetine I would consider a withdrawal over about 6 months.

-Is your prescription brand name (Eli Lilly Cymbalta) or generic?

-How many beads in a capsule?

-Do you have anxiety, and if so do you have a med that works for it aside from the Cymbalta?

 

I will get back to you.


#6 Ericak

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Posted 10 April 2015 - 10:31 PM

Wow really?! Six months?! That seems so long for 20mg. Is it at all possible that the side effects will go away over time?

I'm wondering if sea sick bands would help. It scares me to take something after I know how poisonous it is... I just hate that drug companies can hide the addictive nature of a drug like this.

No I don't have anxiety. I'm having sure weepiness, but just a little more than normal really.

#7 Ericak

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Posted 10 April 2015 - 10:35 PM

I can't figure out this forum quite yet. Probably because I'm brain addled from the withdrawal.

Eli Lilly is the maker.

185 beads in each capsule.

#8 thismoment

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Posted 11 April 2015 - 01:00 AM

Ericak

Hi.

5 years at 20 mg per day would be considered long-term exposure to this neurotoxin.

I would start the program with a 6-month target to finish, and make adjustments as you go. Consider it an intermediate timeline that can be shortened or lengthened depending on how much you can tolerate. The severity of the symptoms will essentially dictate the timeline-- therefore, it could be less than 6 months or it could be more; the symptoms have control.

Yes it's possible to be symptom-free at the end of weaning. Some people say the symptoms slowly fade until you no longer notice them. Others report the intermittent return of a few symptoms. Sometimes certain symptoms persist for months after weaning, and sometimes for years.

I don't know about sea sick bands, but I agree with you about drug companies.

Should you want to cry-- find a safe place and just cry yourself out. It's okay.

Should you encounter anxiety in your withdrawal, address it sooner than later-- consider a benzodiazepine for as-needed only. They are addictive too and daily usage over a couple of weeks will get you hooked and you'll have to wean off that too. Non-addictive alternatives are hydroxyzine and clonidine.

How to-- 185 beads = 185 days or 6 months at the rate of one bead per day taken at the same time each day.
Day 1 open the capsule and remove 1 bead. Reassemble the cap and swallow it with water.
Day 2 open the capsule and remove 2 beads. Reassemble the cap and swallow it with water.
Do this for 30 days (on day 30 you will remove 30 beads of course).
Monitor your symptoms and decide if you want to shorten the timeline or lengthen it.

This is an outline for you to consider, and we can discuss what happens after 30 days if you think this is ok.

#9 Ericak

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Posted 11 April 2015 - 09:33 AM

Wow - who knew it was such a devastating neurotoxin?! I've got to say that I'd probably take it again if I was ever in the kind of gruesome unremitting pain I had when I started it.

Then though, I was unwilling to take narcotics again for pain relief. As it turns out I'm not dependent upon those either physically or mentally and it was easy for me to quit those. I'm probably immune because of taking them so much as a child.

Start a program with a 6-month target to finish, and make adjustments as you go. Decreasing one bad Pure day. Last night I took 184 beads and woke up without vertigo. Yay!

That's scary about some people having symptoms for years. After reading through the posts here yesterday my family and I decided it was too much of a risk for me to NOT take the cymbalta for six more months. I really need to be able to notice hemiplegia symptoms when they start, and last night I was Dropping things from the vertigo.

My daughter died of depression 4+ years ago, so I'm well acquainted with crying whenever & wherever I feel like it. My family is used to me having fits of tears at random times.

I actually feel more anxiety ON cymbalta than off. As for benzodiazepines, I take those daily for HM control along with verapamil. I suspect the cymbalta of exacerbating HM symptoms, but now I've got 6 months to test my theory.

Also, I'll let my M.D.s know what I've decided on Monday regarding cymbalta, and maybe I'll reduce another med.

Thank you thank you thank you for this forum! As soon as I can figure out how to do it I'll make a profile. :)

#10 thismoment

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Posted 11 April 2015 - 11:52 AM

Hi Ericak

 

You sound up-beat today! That's great.

 

If, after 30 days you exhibit no symptoms you could consider shortening the timeline by removing extra beads. Should symptoms emerge that are difficult, then you have to back up some.

 

Regarding narcotics, I have no moral favourites when it comes to pain relief and quality of life. It's my opinion that opiates and opioids are the appropriate medication for pain, and they are no more destructive and addictive (dependency-forming) than these psychiatric serotonin-based drugs. Also, there is a safety net built-in to help patients withdraw from narcotics, and here it is:

 

Treatment for drug abuse and addiction is delivered in many different settings using a variety of behavioral and pharmacological approaches. In the United States, more than 14,500 specialized drug treatment facilities provide counseling, behavioral therapy, medication, case management, and other types of services to persons with substance use disorders. NIH National Institute of Drug Abuse.

 

There is, however, not a single facility dedicated to the withdrawal from psychiatric drugs. Therefore if my only two choices for a particular medical condition were Cymbalta or heroin, I would take the heroin hands down!
 
I am sorry to hear about your daughter. I do hope you find some solution for the HM, as that condition must be very difficult indeed.
 
Take care.

#11 TryinginFL

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Posted 11 April 2015 - 12:01 PM

Erica,

 

I want to express my condolences regarding your daughter.  I lost mine almost 6 years ago, and she also suffered from depression, fibro and a heart defect.

 

I understand how you feel - there is nothing worse than losing a child.

 

Love and hugs,

Liz :hug:


#12 Ericak

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Posted 11 April 2015 - 02:48 PM

Thank you Liz,

 

It's true that bereaved mamas are the only ones who understand other bereaved mamas. 

 

Peace to you  :hug:


#13 Ericak

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Posted 11 April 2015 - 04:10 PM


Hi Ericak

You sound up-beat today! That's great.

If, after 30 days you exhibit no symptoms you could consider shortening the timeline by removing extra beads. Should symptoms emerge that are difficult, then you have to back up some.

Regarding narcotics, I have no moral favourite... []Therefore if my only two choices for a particular medical condition were Cymbalta or heroin, I would take the heroin hands down!

I am sorry to hear about your daughter. I do hope you find some solution for the HM, as that condition must be very difficult indeed.

Take care.


Ok I'll reevaluate again in 30 days.
This afternoon I have some fatigue and a weird feeling in the top of my skull, but nothing bad.

The good news is that living with chronic/acute pain for one's whole life is that we tend to be a grimy determined lot. That's also the bad news... If I hadn't stumbled across this forum I'd be devoted to muscle my way through until I had a seizure.

As a matter of fact I've been discussing this on KickAS.org, and one guy actually got seizures from TAKING cymbalta.

I also have no moral judgement on pain relief. There's nobody who can get anything done in life while living with chronic or periodic acute pain.

Thank you for your support.

Peace to you:)

#14 thismoment

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Posted 11 April 2015 - 06:55 PM

Ericak

You're so right!

Pain has a direct link to depression, and depression's closest companion is anxiety. And these three will gang up on you-- they'll terrify you with nightmares, criticize you every waking hour with that perpetual voice inside your head, and they will leave you empty and joyless. Soon the obvious question will arise, "What's the point?"

One must knock the pain down, and the next culprit to squash is anxiety. Depression is a 'result', not a self-generating entity, and that's often overlooked.

#15 Ericak

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Posted 11 April 2015 - 07:48 PM

One must knock the pain down, and the next culprit to squash is anxiety. Depression is a 'result', not a self-generating entity, and that's often overlooked.

 I've always said that I got JRA and anxiety on the same day.

 

But I think really that I had early childhood sleeplessness as a result of painful knees and ankles.

 

Then when I got the drug bombs, and granted they had nothing better then, the combination of prednisone & codeine was just anxiety making. Plus which, narcotics can cause anxiety themselves.

 

But what's the alternative? Take no meds and be in bed all the time?

 

I've had one six month long black hole depression in my life, and at that time my dad and husband were both dying at the same time. I have so much respect for people who live with chronic depression... I don't know how they do it. It was very physical for me. Exhaustion, heavy feeling, darkness even though the sun was shining.

 

I've been doing a LOT of work on learning interpersonal and physical boundaries, mindfulness, nonviolent communication, and peer support over the past 4+ years since my girl passed away. The anxiety I used to feel is almost gone. The worst has happened, so what else is there to be afraid of?

 

Also, I don't expect myself to be different from who I am anymore. No more driving my body around like an AC Cobra.

 

Peace to you.


#16 thismoment

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Posted 11 April 2015 - 08:15 PM

Ericak

[But what's the alternative? Take no meds and be in bed all the time?]

I agree with you-- don't suffer! Find what works; and it doesn't matter to me if the cook works out of a Big Pharma lab or the garage down the street.

#17 Ericak

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Posted 11 April 2015 - 08:20 PM

Ericak

[But what's the alternative? Take no meds and be in bed all the time?]

I agree with you-- don't suffer! Find what works; and it doesn't matter to me if the cook works out of a Big Pharma lab or the garage down the sLOL

LOL. I'm afraid of the garage people.  :ph34r:


#18 Ramona80

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Posted 13 April 2015 - 03:12 PM

I am taking 50 mg right now (A 30 mg capsule, and a 20 mg capsule.) They look like they're from different manufacturers, neither of which is Eli Lilly. How would I go about bead counting in this situation?

(I found we have a compound pharmacy in our area, but when I talked with them they said they are unable to re-dose Cymbalta.)


#19 fishinghat

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Posted 13 April 2015 - 04:42 PM

It really depends on how many tablets in each capsule. Let us know the number and we will try to give you a starting point.


#20 Ramona80

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Posted 13 April 2015 - 05:21 PM

The 30mg capsule contains 149 beads

 

The 20mg capsule contains 97 beads


#21 fishinghat

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Posted 13 April 2015 - 06:30 PM

That's good. That means that each bead contains about the same amount of medicine. I would suggest a 2 bead drop each day. If things get too bad just stay at the same level until you stabilize. Its slow but manageable.


#22 Ramona80

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Posted 13 April 2015 - 07:05 PM

I found that I could easily open the capsules. Is it OK to just put the capsule back together, or is there an unseen seal that's broken then? Should I get the gelatin capsules instead?


#23 thismoment

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Posted 13 April 2015 - 08:28 PM

Ramona

 

After you remove the appropriate number of beads, just put the capsule back together and take it with water. No problem-- there's no seal; it's a friction fit.

 

Save the beads you remove because after half-way through weaning, the saved beads can be used to make up capsules that will contain fewer and fewer beads.

 

Good work!





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