16 replies to this topic

[photomom3]

Hi All, short intro to a long story over the last several years, my 13 y.o. son has been having anxiety attacks for several years. He's recently been diagnosed in the Autism spectrum with OCD and General Anxiety Disorder. We've tried Zoloft, Prozac, Lexapro (which made him gain 40 lbs!!) and are now on Cymbalta. My husband is on Cymbalta with success (he feels, I see a personality change), so the dr. decided to put my son on it as well.  We've seen no progress with any of the medications. After much research, we feel that his condition is related to a bacteria attacking his brain (another long story).  So, I'm weaning him off the Cymbalta.  We have 60 mg and 30 mg tablets.  He's been on the 60 mg for about 8 weeks and was on 30 mg for a few months before that.  He's on day 3 of me alternating 60 mg one day with 30 mg the next day.  Questions:  What side effects should I look for in someone this age?  And can I continue the alternating for a few weeks and then drop him down to the 30 mg every day?  And then, at that time, should I start taking beads out?  Would so appreciate your help so I can get my dear boy off this drug!! Thank you!  

[equuswoman]

Hi All, short intro to a long story over the last several years, my 13 y.o. son has been having anxiety attacks for several years. He's recently been diagnosed in the Autism spectrum with OCD and General Anxiety Disorder. We've tried Zoloft, Prozac, Lexapro (which made him gain 40 lbs!!) and are now on Cymbalta. My husband is on Cymbalta with success (he feels, I see a personality change), so the dr. decided to put my son on it as well.  We've seen no progress with any of the medications. After much research, we feel that his condition is related to a bacteria attacking his brain (another long story).  So, I'm weaning him off the Cymbalta.  We have 60 mg and 30 mg tablets.  He's been on the 60 mg for about 8 weeks and was on 30 mg for a few months before that.  He's on day 3 of me alternating 60 mg one day with 30 mg the next day.  Questions:  What side effects should I look for in someone this age?  And can I continue the alternating for a few weeks and then drop him down to the 30 mg every day?  And then, at that time, should I start taking beads out?  Would so appreciate your help so I can get my dear boy off this drug!! Thank you!  

Hi welcome to the forum. I would contact your son's physician before trying to wean him off this drug. From what I understand the ppl here are of the adult age. I would be really cautious with this. But can understand your concern of wanting him off this drug.

BTW my DD is on the autism spectrum~Aspurgers.

Let us know how it goes.

[Wagtail]

Agree with Equuswoman .. & wean him off very very slowly as the side effects are shocking . Thismoment or fishinghat are more experienced members & Im sure they will give you the best advice . I personally weaned off way to fast & have experienced dreadful withdrawals . I would hate to see a 13 yr old child experience what I have dealt with over the past 9 weeks.
As most of the people here are adults, there is no way to know how he will handle it.
The slower you go the better I think.
Good Luck & hold him close.
:-)

[thismoment]

Hi Photomom3.

 

My friends Equuswoman and Wagtail have given you honest answers, and I agree with what they've said.

 

Let me see if I can unpack this.

 

Was your son ever prescribed a benzodiazepine for his anxiety (Valium, Xanax, Ativan, Lorazepam, etc)? One of these may prove helpful to (used as required) keep the anxiety at bay while you monitor his withdrawal from Cymbalta. Anxiety is the destabilizer.

 

You've certainly hit all the popular antidepressants, and I note that you are the only one in the household that perceives a problem. So you're kind of alone in this, and you need some allies- well there are a few here: me, Equuswoman, Wagtail, Fishinghat, Timbo, Donna, Clara, Akk, MT3B, JustMeister, Carleeta, AaronSD and so many others with generous hearts.

 

Your doctor should be an ally. And also consider enlisting a family member or two that you can trust, aside from your husband and son- people you can count on to support you and not judge.

 

Your doctor has to be in the loop, even if he or she is NOT an ally, and disagrees with what you are doing- you may need a professional to call.

 

Don't alternate between the 60 and the 30. That will bring on symptoms quickly.  Rather, taper the dosage in a linear fashion from 60 to 30. The manufacturer, Eli Lilly, neither recommends cold turkey nor withdrawing in steps. Consider tapering by bead-counting between 60 and 30 over perhaps 6 weeks, then from 30 to 0 over perhaps 12 weeks. Bead-count for both in a gentle-shoping linear fashion- NO STEPS.

 

Open the capsule and count the beads, and use that number to determine how many beads you will remove form each capsule each day to yield a linear taper. If there's 300 beads in the 60 mg and you want to reduce that to 30 mg over 6 weeks- it's .5X 300=150 and divide that by 42 which gives you about 3.5 beads per day. Round that down to 3 beads, and take out 3 beads the first day, 6 beads the second day, 9 beads the third day and so on- you'll be at 30 mg in 50 days.

 

The side-effects will be more acute with the stepped reduction you are currently using. The slow linear taper will generally yield an easier withdrawal. The good news is the evidence indicates that the healing of the brain between fast and slow tapering finishes about the same.  However, the linear taper is somewhat easier on the patient.

 

It's difficult to say what symptoms might appear first, and how strong each may be. Apparently some folks get little or NO withdrawal symptoms at all!! How nice would that be?

 

If the symptoms are too difficult, stop reducing and consider adding a few beads back until things stabilize. Then after some days, carry on reducing.

 

This is a tough job you are contemplating, and it would be wonderful if you could have this done at a safe and comfortable professional facility that has the insight and expertise to address your son's unique condition. My heart breaks for you in this difficult undertaking.

 

Moms make the world go around. 

 

Best wishes!

[fishinghat]

Fully agree with thismoment. The step method is often recommended by drs but weaning slowly is the way to go. Also, him being under the age of 18 increases the risk of suicide while on it and while coming off. Watch his attitude closely, and another good reason not to come off too fast.

[equuswoman]

Thank you both, thismoment and fishinghat!

[Carleeta]

Hello Photomom,

Reading your story brought tears to my eyes and heart. You are a loving and courageous mom, having being faced with these challenges your 13 year old son is experiencing. Agreeing with Equuswoman, Wagtail, Fishinghat, and Thismoment: we are adults on this site. Your sons age, being only 13 has a significant impact on any advise I would offer at this time with the exception of speaking with your sons doctors regarding your concern. Another important issue you mentioned was 'possible bacteria in the brain, . There is much going on here with your son and my best opinion for you is to bring all these diagnoses together with the physicians, get second opinions on everything and thirds if you have to. Once they find out exactly what is truly going on with your son. Then and only then would I talk to all doctors about your concern and take it from there. I'm stating this because of his age. Hoping I don't sound harsh this is by no means my intention. You are the most loving mom and you will do what's best for you son. Good Luck and God Bless you..

[Wagtail]

Thank you both, thismoment and fishinghat!

Yes I want to thank you both also ... Your advise is stop on as usual .

Thismoment , every time someone new joins our forums , you have to type out the same advice on tapering . I wonder if it would be possible to have it posted as a permenant topic so all new people looking for that advice can see it immediately without scrolling through the myriad of posts.
Maybe under a heading of " THE ONLY TRIED AND PROVEN WAY TO WITHDRAW FROM CYMBALTA." & then show a list of s/e that can be expected by the majority .
It would be a godsend for everyone suffering as we all know that it's the advice that most of us want & need.
Just a thought !!!!!.

[thismoment]

Wagtail

 

Of course you are right. But sometimes when someone is frazzled and fragile, even a simple search is daunting. 

 

And yes, there should be an archive of Bead Counting, because that is what we advocate- it's what we do. I don't think the format of this forum allows that kind of isolated posting- sooner or later everything gets covered by follow-up postings.

 

Suggestions from anyone?

[Carleeta]

Thismoment. .start a new topic staying: start bead counting. The you or Fishinghat can post your schedules inlayman terms how this process asked here often. Or this topic may may be a way to stop cymbalta an easier way..I do agree with Wagtail. Concerning the overriding post...A member her or a few members could check to see if anyone posts some not related to the bead counting method and a dress that post by replying "this forum is a reference schedule and to be read only by members who want to follow this schedule. Please leave no post; it's for reading only..To keep the forum visible each of out daily members can go in and type our name and name only so the forum stays close to the top. After all we are all in this together..Might work..my suggestion might need to be tweaked. ..but welcoming other suggestions...With all our suggestions we can make this happen!

[Lad]

A topic can be pinned by the administrator as is "List your Symptoms" under "How are you Feeling". I believe it can also be locked from future posts.

 

Someone would have to arrange this with KenAdmin.

 

Lad

[thismoment]

A topic can be pinned by the administrator as is "List your Symptoms" under "How are you Feeling". I believe it can also be locked from future posts.

 

Someone would have to arrange this with KenAdmin.

 

Lad

Lad thank you.

 

How are you doing? Haven't heard from you for a while.

[Lad]

Doing OK thanks thismoment. I was told by a neighbour I looked weary today while walking the dog and I have to say I feel I deserved it.

 

Still looking in here occasionally but we seem to be up to our noses in drama from every direction. Nothing withdrawal related but others' generally not knowing that piece of my puzzle makes dealing just a little more tough. I feel like one of the aliens when they open the pods in the movie Cocoon. Shrivelled up with my life energy zapped by others.

 

I am 12 1/2 weeks off crackalta, cold turkey, now. The worst of the withdrawal has passed, thank goodness, but the continued withdrawal anxiety isn't helping with the ####storm. Sure does make you appreciate the less chaotic times.

 

I was going to give examples but I realize it all looks just too unbelievable so I won't. Lets just say I am glad the baby is finally sleeping a little longer so I can rest enough to deal with it all and thank god I am off the crackalta so I can think straight!

 

I hope all is well with you and all of the wonderful friends here.

 

Photomom, I am particularly horrified by what you are facing and I want to share my support to you and your young one. Please Please Please hold him close through this since, as many here have shared, this may be a rough ride for a young brain!

 

Lad

[Wagtail]

Doing OK thanks thismoment. I was told by a neighbour I looked weary today while walking the dog and I have to say I feel I deserved it.
 
Still looking in here occasionally but we seem to be up to our noses in drama from every direction. Nothing withdrawal related but others' generally not knowing that piece of my puzzle makes dealing just a little more tough. I feel like one of the aliens when they open the pods in the movie Cocoon. Shrivelled up with my life energy zapped by others.
 
I am 12 1/2 weeks off crackalta, cold turkey, now. The worst of the withdrawal has passed, thank goodness, but the continued withdrawal anxiety isn't helping with the ####storm. Sure does make you appreciate the less chaotic times.
 
I was going to give examples but I realize it all looks just too unbelievable so I won't. Lets just say I am glad the baby is finally sleeping a little longer so I can rest enough to deal with it all and thank god I am off the crackalta so I can think straight!
 
I hope all is well with you and all of the wonderful friends here.
 
Photomom, I am particularly horrified by what you are facing and I want to share my support to you and your young one. Please Please Please hold him close through this since, as many here have shared, this may be a rough ride for a young brain!
 
Lad

Lad, nothing you told us would be unbelievable, some of us has most likely experienced the same experiences . I too am post CRAPALTA approx 11/12 weeks , from ten years of 60mg to zero in two weeks . Personally nothing surprises me anymore.
:-)

[thismoment]

Lad

 

Good to hear you're 12.5 weeks out and the overt symptoms have passed. This a serious project for your brain to heal and re-configure systems that were formerly managed by the drug. 

 

During this phase of the recovery, healing is slow and progress comes in small packets.

 

Sometimes we become impatient for wholeness, and we discount the distance travelled.

 

Some days are jittery in the later months off Cymbalta, and anxiety emerges unannounced. I kept a benzo on the shelf for these moments, and just knowing it was there helped most times. Nobody else in the family can feel our anxiety rise, but everybody knows how it affects us (and them).

 

I don't wish to be forward, but do you truly feel that you are, "Shrivelled up with my (your) life energy zapped by others."? Often that interaction is a "contract", and one side pitches the ball and the other side catches it. Somebody has to throw down their glove and say, "Let's talk!"

 

These coming months may be tedious, and improvement will be slow- but improvement does come.

 

Your baby will become you.  Decide which is the very best 'you' for your child to emulate, and then become that person.

 

Best wishes to you and your family.

[Clara]

Lad, hang in there! We are rooting for you!!! I so agree this moment!!!! I think what you are saying is take care of the IMPORTANT things... self and family and let the rest take care of itself!!!!   Cymbalta free since mid/late Nov.!!!! On it for waaayyyyy too long.... years!!!!   All my best to all my forum friends! clara

[Adrienne3003]

Hi...I have just finished weaning my 17 year old off cymbalta. She has suffered from a generalized anxiety disorder since her second heart surgery. Using the generic form, I removed 5mg (one bead) ever 7 days. She was off school for 3 weeks, and generally felt like crap...emotional mood swings, headaches, dizziness, brain zaps. It was rough on whole family. She is a week and half cymbalta free.
She started Wellbutrin at the same time. And has taken extra omega 3 every day.
Go slow, and you will make it.