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Need Help For My 15 Year Old Daughter


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#1 ncmom

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Posted 02 July 2018 - 03:05 PM

Hi - new member to this forum, but have been reading for a few months.  First, a thank you to the forum administrators - this is a very valuable service.  I've compiled a lot of information from the site about omega 3, clonidine, hydroxyzine and vitamin supplements (or not) and we are preparing for our second taper attempt and I have a few more questions.  Brief background.  My daughter suffered a concussion in December 2016, diagnosed with post-concussive syndrome.  Chronic headaches 24/7 - and occasional nausea.  After no relief with migraine meds, neurologist suggested cymbalta for pain - first 30 mg, then up to 60 mg.  Never any mention of possible problems with withdrawal with two different prescribing doctors, but I digress...  Was only on the 60's briefly, she felt very tired, etc. and very dizzy upon standing.  Went back down to 30 mg, stayed on for 4 months, no change in pain and we decided she should go off the drug as some of the side effects from cymbalta may have been adding to her original problems - headache and nausea.  Dr. recommended 30 mg every other day for two weeks, then 30 mg every few days (I know now what a joke that advice was).  After 3 weeks, daughter was suicidal, extremely irritable, crying all the time, terrible flu-like symptoms, unable to eat or even get up off the sofa.  After reading recommendations online, we started back up at 5 mg, then up to 12 mg and she stabilized.  Went on vacation and was trying the 1 bead a day taper and it was too much, out of the country, terrible situation and we had to go back up to 20 mg to stabilize again.  So, now we're home and going to try again from 20 mg.  Daughter is not on any other meds and has never taken any other drugs for mental health.  She has always had a lot of anxiety, highly driven, perfectionism, etc., so we originally thought the cymbalta might be good for her.  Now, just trying to help her get back to her pre-cymbalta status - that seems like a blessing now.   

 

1 - would much prefer to have some professional help with this, but it's hard to find any medical professional that is experienced with this withdrawal issue - have called all around and getting nowhere.  Charlotte, NC area if anyone has any suggestions.

 

2 - should we use the capsule.  In our first taper attempt, we counted out the beads and divided them in half and gave her the medication without any capsule twice a day to try to maintain a consistent amount of the meds in her body over the course of the day.  Is this OK, or should we use the capsule and just take out the requisite beads and give it to her that way once a day each day?

 

3 - do we need a scale to measure out beads to make sure that she's getting the correct amount each time, or can we rely on counting the beads?

 

4 - I realize now that 1 bead a day was way too fast.  In her 20 mg capsule, there are 120+ beads (we just cut it off at 120 beads for ease when we stabilized her).   I read somewhere (maybe on this site?) that taper should only be 5-10% of current dosage per month.  So, at 20 mg, the taper should not exceed 2 mg for the first month, that's only 12 beads.  I know it's an individual thing and some can go faster or even slower, but it would be helpful to have some input on this taper schedule. 

 

Would appreciate any comments, referrals or advice anyone cares to offer.  Thanks.

 

 

   


#2 fishinghat

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Posted 02 July 2018 - 05:03 PM

Welcome ncmom
 
Sorry, this ,must be real tough on both you and your daughter.

"Was only on the 60's briefly, she felt very tired, etc. and very dizzy upon standing."
It is well documented that Cymbalta side effects include low blood pressure but you probably weren't warned about that either. lol

First of all you two have done a fine job getting her stabilized at 30 mg. That is a good start.

1 - Can't help you there.

2 - Use the capsules and put her dosage in it. You can take them directly but they will enter the system faster and may, in the long run, irritate her stomach. I personally agree with your decision to take 1/2 the dose in the AM and 1/2 in the PM to keep a stable blood serum level. Good idea.

3 - That really depends on the manufacturer. If your eye ball tells you that they are all the same size then counting should be OK but if you can visibly see a difference in size then weighting them would be better. I have some data from other members so if you can tell me the manufacturer I might be able to give a better answer.

4 - Your comments are correct...It depends on the individual. You have already tried 1 bead a day so I would recommend going to 1 bead a week for one week and if no symptoms then 1 bead every 3 days for a week, then 1 bead every 2 days for a week until you find her limit and then back off a little. Also the last 5 mg is by far the hardest so plan on 1 bead a week or even less if she is sensitive to the withdrawal.

We will do everything we can to help you guys. We don't want this young lady to suffer any more than she has too. Keep us posted and feel free to ask questions. We are here to help.

#3 gail

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Posted 03 July 2018 - 04:36 AM

Welcome NcMom,

Such a young girl that has to put up with this. I'm sorry for your pain.

Fishinghat has given you great advice and I have nothing to add.

Since you are in Canada, so am I, should anxiety arrise with the tapering, we have a kind of Benadryl here that can't be found in the US. Let me know. Thanks for being such an understanding mom to your daughter, she's lucky to have you.

By the way, you will not find better and exact info elsewhere concerning Cymbalta, than with Fishinghat

#4 ncmom

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Posted 03 July 2018 - 08:05 AM

Thank you Gail and Fishinghat for your informative and quick response.  (Gail, we are in the US, not Canada, but we have visited several times and love it!)

 

Scale or counting:  The manufacturer of the drug is Prasco Labs.  Sometimes I can see that a bead is broken, etc. and much smaller, so I just discard those altogether.  The rest are somewhat uniform to my eye, but not identical.

 

Taper schedule:  I like your idea of starting very slow and figuring out her threshold - much better plan.  Thanks.

 

Capsules:  If we are going to try to give her the medication in the capsules twice a day, we'll need more capsules.  Is there a resource for purchasing time released capsules?  I looked briefly online, but I only see basic gel capsules that dissolve within 30 minutes. 

 

Thanks. 


#5 fishinghat

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Posted 03 July 2018 - 08:39 AM

Scale and counting - I have no particular information on Prasco beads other than members saying the are nearly uniform and n o members reported troubles with bead counting.

Cymbalta capsules are not enteric coated, only the individual beads are. Eli Lilley uses gel capsules. The basic gel capsules work fine and can not only be bought on line but also through your local compounding pharmacy.

eg. - https://www.stanleyrx.com/
http://www.ccnprx.com/

Just to name a couple in your area.

#6 ncmom

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Posted 03 July 2018 - 10:26 AM

Thank you Fishinghat - so many questions answered so easily!  We will go with the gel capsules.  Thanks again and I'll keep you posted on her progress.  No one, much less a 15 year old, should have to go through this experience.  My anger at her doctors and Eli Lilly is hard to manage, but I see it as our obligation to spread awareness regarding the risks of this drug.  


#7 fishinghat

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Posted 03 July 2018 - 11:13 AM

Best wishes and talk to you soon.

#8 gail

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Posted 04 July 2018 - 06:52 AM

Hi again,

My mind skipped a beat, why on Earth would I think Nova Scotia?

So happy that you have a great method for your daughter, keep us posted please.

#9 fishinghat

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Posted 04 July 2018 - 06:58 AM

That sounds like something I would do!! lol

#10 ncmom

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Posted 12 July 2018 - 12:19 PM

Day 7

 

2 of 120 beads down - going OK. 

 

Fish oil - I've seen many (MANY) posts about fish oil including your updates on 7/8/18.  So, just want to make sure I understand.  I'm looking at the fish oil my husband takes:

 

Carlson Laboratories:  Professional Strength Elite Omega-3 - each soft get contains:

 

1250 mg Norwegian Fish Oil:

     Omega-3 Fatty Acids                800 mg

     EPA                                           400 mg

     DHA                                          300 mg

 

Also 10 IU of Vitimin E [which I think you are supposed to take with fish oil?]

 

I confirmed that this is reputable company, the fish oil is distilled and mercury free (not enteric coated though).  Your recommendation is 2000 mg/day, but I need to know - is that 2000 mg/day of just the EPA and DHA or total fish oil.  If it's just the EPA and DHA, my daughter would have to take 3 of these soft gels per day.  I know I'm supposed to be looking for one with little to no ALA, but I don't know how ALA shows up on the label - is that the Omega-3 Fatty Acids?  Or does this particular brand not have any ALA at all?  I think this is a good ratio?    


#11 fishinghat

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Posted 12 July 2018 - 01:27 PM

There are 3 omega 3 fatty acids...Ala, Epa and Dha. You need 2000 mg of total epa and dha a day for the withdrawal. The total of 800 mg Omega 3 tells you this capsule contains 400 of epa and 300 of dha and 100 of ala. The ala won't hurt anything it simply isn't necessary for treating anxiety/depression. 3 a day sounds about right.


#12 ncmom

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Posted 12 July 2018 - 04:04 PM

Ahhh, Thank you!  


#13 ncmom

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Posted 13 July 2018 - 03:16 PM

Went to daughter's pediatric neurologist today - nice guy and I know he wants to help her, but twice during the 30 minutes we were there, he questioned the severity of the symptoms and didn't believe that they were necessarily connected to the withdrawal - he thinks the side effects from the withdrawal are actually underlying depression coming back out - as if depression were the ONLY side effect.  I'm sure that can be true for some people, but my daughter has never had depression problems until she started taking Cymbalta.  She was put on this poison for PAIN, not depression.  I know there is often overlap between the two and I get that he simply has not had patients that have gone through such a severe withdrawal, but it's still so disheartening - it's like living in the twilight zone - why don't doctors believe the patients!!!???  Anyway, rant over.  He suggested cross-taper with Zoloft and thinks that will be easier to taper from than Cymbalta.  With cross taper thinks she can get off cymbalta in 3 months (down from 20 mg).  Most of the discussion on here is about Prozac for a cross taper, not zoloft.  He didn't like Prozac because he thought Prozac has some other unwanted side effects.  They are both SSRIs, so any comment about whether this is even advisable and if so, which one might be better/worse would be appreciated.  I am very reluctant to do either one.  Like most people on this site, I think that my daughter is one of the few/many? that has a severe response to the withdrawal from antidepressants and I don't think any drug is going to be different - the only possible difference is that Prozac and Zoloft are SSRI's and not SNRIs, so maybe getting off those might be better?  Bead count only or cross taper with bead count?


#14 fishinghat

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Posted 13 July 2018 - 03:44 PM

Many on this site have cross tapered to Zoloft, Lexapro or Prozac for relief and then taper off the new AD. Those three seem to be the easiest to taper off of but still tough.

The manufacturer of Cymbalta, Eli Lilley, often took the position that the symptoms some experience is a return of psychiatric symptoms. Once Cymbalta was approved for pain however it became obvious that these were indeed withdrawal symptoms as most of the people who took it for pain did not have psychiatric issues before starting Cymbalta. Much research had been done over the last few years and considerable court cases. This condition has even been given a medical name ...Cymbalta Discontinuation Syndrome. The courts have ordered the FDA to issue warning about the severity of withdrawal as well as requiring the manufacturers to include a black box warning about the withdrawal. Unluckily many drs are not aware of this.

A three month cross taper is a good idea as that can avoid a lot of the effects of switching. Zoloft has been particularly successful in handling the Cymbalta withdrawal for many, including myself. I would caution that going on another AD carries with it the risk it will not work and then things can get real tough but usually that is not the case.

Bead count or cross taper? Either one can get you there and there is no way to tell ahead of time which will bring the least suffering. Flip a coin.

#15 gail

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Posted 14 July 2018 - 06:42 AM

Hello NcMom,

My opinion is that perhaps bead counting remains the best choice. Two beads down, your daughter is ok you say.

Unless your daughter feels awful and she doesn't seem to, I would continue that way.
If the pain is intolerable, I would definitely add something to ease the way. Even an opiate.
That would ease the withdrawal part also.

Of course, I do believe in cross tapering with Prozac or Zoloft. Please come back and update us. Thank you!

#16 ncmom

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Posted 16 August 2018 - 04:17 PM

I don't know what day we're on, but we're 12 beads down from 120 start.  It is not going well.  The withdrawal, even at the excruciatingly slow rate is rough - some days she is very depressed.  But, even staying at a constant dosage isn't much better as the medication itself is causing depression due to her age.  We are going to try a cross-taper and that scares us even more.  No questions, just thought I would check in.   


#17 fishinghat

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Posted 16 August 2018 - 04:58 PM

Good luck ncmom. Any idea what you will cross taper to?

#18 gail

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Posted 16 August 2018 - 05:34 PM

Ncmom,

So nice of you to stop by. So sorry for your daughter.

Encouraging to to cross taper with a long half life antidepressant like Zoloft, Prozac. Easier to get off.

Please update us, thank you!

#19 ncmom

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Posted 26 August 2018 - 02:25 PM

We're going to go with Prozac - at least that is the consensus of the docs she's seen.  Meeting with pediatric psychiatrist this Friday - he's supposed to be very experienced with cymbalta withdrawal - we'll see.  I'll pipe in again when we start the cross - hopefully first week of September.  Thanks for caring - it feels good to log in and know someone is listening.   


#20 fishinghat

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Posted 26 August 2018 - 03:04 PM

Glad to hear from you was sort of wondering what was happening. Prozac a good choice. Good luck with the new dr. That is always an interesting experience.  lol


#21 ncmom

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Posted 10 September 2018 - 07:07 AM

I have a question.  We are still bead counting while prozac is being introduced for 5 weeks.  We had been bead counting using 30 mg. and 60 mg. capsules we previously had on hand.  Those ran out and the only prescription we had was for 20 mg, so we filled that.  I'm concerned that the beads are not the same size as in the 30 mg and 60 mg capsules that we had been using.  Prasco Labs is the manufacturer and that is the same manufacturer for the previous 30 mg. and 60 mg. prescriptions that we filled and we filled it at the same pharmacy.  However, I thought that I had figured there were about 6 beads per milligram in the previous capsules.  For example, the 30 mg. capsule had about 185 beads as I recall.  That's roughly 6 beads per milligram.  But, when I opened the new 20 mg tablet it only had about 108 beads, not 120.  Do you have any information about this?    


#22 fishinghat

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Posted 10 September 2018 - 09:08 AM

I have collected bead count information from previous members and this is not unusual. Some manufacturers differ in the number of beads/mg between every different dose they manufacturer. When you start using a different manufacturer or dose during bead counting then you just have to count the needs again and do the math. Good catch.

#23 ncmom

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Posted 11 October 2018 - 01:14 PM

Just checking back in.  Down to 92 beads.  Prozac started to cause signs of serotonin syndrome, so we had to back off and go with liquid.  She's up to 4 MG prozac and we are continuing slow taper of cymbalta - trying taper of 1 bead a day now.  I wonder if my daughter will ever be the same person.  I cannot accept that she has to endure this awful withdrawal - the depression, the anxiety, the headache.  She wants desperately to speed up the taper so she can just get it over with.  I just keep praying that she'll get through it and never look back.   Just some thoughts.   


#24 juli

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Posted 11 October 2018 - 03:28 PM

Hi momma.  I am so sorry that you and your daughter are going through this.  It is trully awful.  Yes she will be the same again I promise.  Nothing is broken in her - her nervous system is just pissed off right now.

She will start feeling better once the prozac starts to kick in.

Hang in there and do what you can to help with the depression.

Juli


#25 ncmom

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Posted 25 January 2019 - 12:37 PM

50 Beads (roughly 8 mg) - Wow, when I look back on this thread, I see how far we've come, so it gives me hope.  The Prozac did not work for my daughter and she had to stop - it was very disappointing, but I'm happy to report that even stopping the 10 mg of Prozac cold turkey did not result in significant withdrawal symptoms - just wish it would have worked.  Anyway, so we're back to a "naked" taper of the cymbalta.   We're reducing 2-3 beads a week and now that we're down to under 10 mg, I fear it may have to slow down.  Depression, nightmares every night, insomnia, headache, nausea, anxiety.  Maybe we're going to fast, but even stopping for weeks at a time doesn't seem to matter.  I was reading a few threads today and saw some recommendations for acid-resistant capsules.  We have been using regular gel caps because I was under the assumption that the beads themselves were enteric coated, not the individual capsules.  Now I don't know whether we should change or not.  Thoughts?  If the duloxetine with the gel caps we've been using is breaking down in the acid too quickly, then, theoretically, she's not getting it and hasn't been getting it - or all of it - for months.  If we change now to acid-resistant capsules, maybe she'll be going backwards!  I think I just answered my question - no changes.  Daughter met with new Doc yesterday - I wasn't there - my husband attended and new doc said just stop all beads now - 'rip the band-aid' - and I'm really struggling with that.  My daughter has been asking for this for months - she just wants it over with, but we know what happened with the first ill-advised taper - it was the nightmare we are all familiar with.  The symptoms she has now, as bad as they are, are nowhere near as bad as the symptoms she had with the every other day taper.  Anyway, one of the reasons I'm chiming in today is to ask about Amitriptyline as a possible cross-taper or helpful drug to ease the taper.  I am so reluctant to put any more medications in her body, but thought I would throw it out there to see if anyone had any thoughts.  I don't see this drug mentioned in the numerous threads - but maybe I'm just not looking in the right place.  Hope everyone is well and happy -  it feels good to just check back in.  


#26 invalidusername

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Posted 25 January 2019 - 01:25 PM

Hi ncmom,

 

Shame the Prozac didn't work - but bear in mind this can take a good 6-8 weeks to see clear benefits. Longer half-life drugs rarely give much trouble of withdrawal after such a short amount of time. Regarding the 10mg rule - you are absolutely right, it is time to put the brakes on here. Stop going by the rule of 3 beads per week and listen to the body. If things are not stable, then STOP, as long as necessary. But....

 

...having seen the part about the gel capsules, this WILL be, for sure, the reason why there are problems. The gel capsule will break down in the stomach before reaching the intestines/liver. Cymbalta MUST reach the intestines - the little balls do not survive the stomach acids. So without going on about the medical side too much, but you will be looking at a reduced dose to what you are putting in your mouth relative to what is actually hitting the blood stream. I can guarantee you that when you start using enteric capsules (acid resistant), she will pick up within a few days.

 

So my advice would be... get the enteric coated capsules, but stick to the dose you are currently on. Do not change this dose until stable - and it will stabalise. Under no circumstances should she stop now. She WILL get a lot worse - trust me. She has had enough because of the wrong capsules. Don't start on any other bridging drug just yet, just get the capsules and wait. Come back and tell us what is happening and we'll go from there. 

 

Please trust us - get your daughter to read this - we know what will work best.


#27 fishinghat

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Posted 25 January 2019 - 01:42 PM

Good to hear from you NCM.
 
I sincerely hope your daughter continues to wean slowly. As far as the composition of the capsule/beads is concerned …

https://dailymed.nlm...f2-c185fbad64ba
Section 11 of the data sheet that comes with Cymbalta says it is a gelatin capsule with enteric coated beads and the beads are designed to prevent contact with stomach acid.

#28 invalidusername

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Posted 25 January 2019 - 04:29 PM

Good to hear from you NCM.
 
I sincerely hope your daughter continues to wean slowly. As far as the composition of the capsule/beads is concerned …

https://dailymed.nlm...f2-c185fbad64ba
Section 11 of the data sheet that comes with Cymbalta says it is a gelatin capsule with enteric coated beads and the beads are designed to prevent contact with stomach acid.

 

Eh??? So why is Duloxetine using enteric coated capsules?? Have just checked and they absolutely do!!


#29 invalidusername

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Posted 25 January 2019 - 04:37 PM

Enteric coated capsule for Cymbalta;

 

https://www.scienced...818087616300782

https://www.valpharm...ec-capsules.php

https://www.research...coated_capsules

 

The confusion is in the semantics Hat. Enteric is often called "hard gelatin", as it starts out as a gelatin capsule, and then coated, but this fact looks as though it gets removed.

 

Regardless of the balls themselves being coated, I still think the uncoated capsule will have affected the absorption into the blood stream. Might be wrong, but would always err on the side of caution. Seems odd that both would be, but obviously done for a reason....

 

Would you agree with dosage and direction I have suggested?


#30 fishinghat

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Posted 25 January 2019 - 05:08 PM

If you look in the body of the text for the first one and the third one they both say...

'duloxetine hydrochloride delayed release enteric coated pellets in capsules.'

It is the pellets that are enteric coated. The capsule is gelatin. I could find no information related to Cymbalta on the second one.



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