Patlin: Helping granddaughter continue her efforts to discontinue Cymbalta

[Patlin]

My 19 year old granddaughter was on 60 mg Cymbalta for approximately 7 months, from April 2022.

Her dose was then increased in November 2022 to 90 mg Cymbalta.

About a year later - in December of 2023, she was tapered very rapidly down from 90 mg Cymbalta to zero and up on Wellbutrin at a starting dose of 150 mg which was increased rapidly up to 300 mg.

This was disastrous. We thought the culprit was the Wellbutrin, so she insisted upon getting off that med. But she continued to suffer extreme problems and in January she begged to go back on Cymbalta. As of mid-February 2024 she has been at 60 Mg Cymbalta until in April & May she saw a naturopath who added St John’s Wort and after a month had her space out her doses of the 60 mg Cymbalta to every other day. Thus continued for three weeks as she went through withdrawal issues, then he had her begin every third day of Cymbalta at 60 mg still. In late May she stopped following the Naturopath’s recommendations and I had her switch to 30 mg Cymbalta daily and she stopped taking the St John's Wort.

 

Since going in the 30 mg daily of Cymbalta for the last nearly 2 months, her symptoms have settled down and we have established care with her primary care doctor, an internist who is open to learning about discontinuing antidepressants and helping with prescribing as needed. I have gotten a jewelers scale to make sure that we are tapering precisely. I have read Joseph Glenmullen’s book from 2004, as well as the pertinent sections of Mark Horowitz’s The Maudsley Deprescribing Guidelines, which we got in May 2024.

 

I feel I’m ready to try to help my granddaughter taper as carefully as possible off the 30 mg Cymbalta. 
 

I am finding that it’s difficult to ascertain which different issues she has are from side effects of the antidepressant and which might be withdrawal effects.

Since first being on an earlier antidepressant, Sertraline, since Fall of 2019, she began experiencing extreme crippling fatigue. She thought she had narcolepsy! She was on that med for perhaps 2 years. I don’t recall withdrawal effects when she discontinued the Sertraline in 2021.

 

Her recent situation is compounded by her taper history being pretty messed up, plus she has other issues which might compound symptoms that could be attributed to withdrawal:

She is autistic and ADHD

She suffers from PTSD.

She also is diagnosed with POTS/dysautonomia and Ehlers-Danlos.

These predate her recent use of antidepressants, (although in the distant past as a very young child, from about 6-8 years old, she was on Prozac.)

 

Any informed suggestions would be welcomed!

 

[Catwoman73]

Hi @Patlin, and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes.  To that end, if possible, your granddaughter may benefit from creating her own account, in order to benefit from the peer support aspect of the forum.  

 

I know Erimus has already sent you a warning, but if you could please summarize your granddaughter's medication history in a drug signature, we would greatly appreciate it. This helps us know her history at a glance each time we visit this thread, so we don't have to read through multiple posts to understand what is going on.  This signature can be updated as changes are made.  In order to complete a drug signature, click on the following link, fill in the box with her history, and click save.  That's it!  You can use mine below as a reference to see how it is done!  Please include any other drugs or supplements that she is taking, so that we can advise appropriately. 

 

Your Drug Signature

 

It sounds like your granddaughter's poor nervous system has been through a LOT over the last few years.  I'm very glad to hear her symptoms have settled down, but I do have some concerns about proceeding with a taper too quickly after all this upheaval.  Her brain may still be destabilized.  Withdrawal comes in windows and waves, and two months is a very short period of time after being so destabilized by all the drug changes.  I would strongly recommend holding her dose of Cymbalta for a few months, and starting a symptom journal to track any withdrawal symptoms that pop up during that time, just to make 100% certain that she is fully stabilized before proceeding with a taper.  Tapering too quickly could be disastrous.  Here is a bit more reading on what to expect after reinstating, and how long it can take to fully stabilize. 

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 How long does it take to stabilize after reinstating or updosing?

 

And a little more on the windows and waves pattern of stabilization:

 

Windows and waves pattern of stabilization

 

I'm so glad to hear you have purchased the Maudsley Deprescribing Guidelines!  That book is practically a bible to me around here lol!  It will certainly help guide you along your journey.  I would strongly recommend taking one of the slower approaches to tapering when you do begin.  5% every four weeks at the most.  Your granddaughter was put on Prozac at a very young age- well before the brain has fully developed.  We have no real way of knowing how that impacted her brain development, and how tapering at this time might be impacted by the early use of antidepressants.  Slow is the way to go!  Her comorbidities of POTS and Ehlers-danlos will also likely flare up during tapering as well (I know from experience- I suffer from ED as well, and while I don't meet the criteria for POTS, I do suffer from some pretty severe orthostatic intolerance).  So you don't want to rush it. 

 

Unfortunately, even with a slow, hyperbolic taper, there is no real way to avoid some withdrawal symptoms as she progresses.  She may not have anything significant at first, but low doses of these drugs have very large impacts on the brain.  So as her dose gets lower and lower, it will be even more important to be flexible in your tapering- slow down, or make smaller cuts if needed.  Make sure she is paying very close attention to the signals her body is sending her.  One should never be white-knuckling it through the tapering process.  As for coping with these symptoms, we have many things that we do recommend:

 

Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals

 

I have found very gentle exercise to also be helpful in coping with symptoms as they pop up, particularly swimming.  Do be mindful that many of these techniques take practice- they aren't a magic bullet by any means.  I have become an absolute pro at moving through my day with mindfulness, and this has become an important tool and coping strategy for me.  If you choose to follow my recommendation to hold for a few more months, this is a very good time to start practicing things like mindfulness, meditation, etc.  If and when difficult withdrawal symptoms hit, it is very nice to have these tools readily available, and well-practiced!

 

We also have a whole lot of things that we recommend she avoid, like alcohol, nicotine, recreational drugs, caffeine, stress, and using other psychiatric drugs to ease the withdrawal symptoms from psychiatric drugs.  All of these just create further neurological instability, and in the case of other psych meds, create physiologic dependance, and they need to be tapered as well.  

 

Getting adequate rest, proper nutrition and hydration are also very important in the healing process.  She will need to treat her body like the temple that it is in order to optimize her healing. 

 

We do not recommend any supplements, except for magnesium and omega-3 fatty acids.  Be aware, though- many people become hypersensitive to medications, supplements, and even foods while tapering/in withdrawal.  Starting on very low doses of anything you choose to introduce is always a good choice, to ensure the body does not have a negative reaction.  

 

In summary, I would recommend holding for a few months before proceeding with a taper, to ensure that she really is stabilized, and not just experiencing a nice symptom window at the moment.  Use this time to prepare for the taper- practice the linked non-drug methods of coping (and others!  If she enjoys painting, or some other activity- this is a good time to do it!), get nutrition on track, and start that symptom journal.  The journal can be a huge help in identifying patterns, and seeing how far she has come.  Once tapering starts, go very slow- follow one of Maudsley's slower tapering schedules, because of her history.  And prepare to be flexible if symptoms become difficult to tolerate.  

 

Most of all, don't lose hope!  It takes a long time and a lot of work to taper safely, but we're here to support your granddaughter every step of the way!  She is in good company here- many of us are on years' long tapering journeys.  Keep in mind that every day is a step closer to being off these medications for good!  And we are healing all the time, whether we feel like we are or not! 

 

This is your introduction topic- each member gets one intro topic.  Please post any questions, updates, etc here.  But do feel free to explore the rest of the forum, and engage with other members as you see fit.  We are a very supportive community, and feeling less alone on this journey is very good for mental health! 

 

❤️‍🩹

 

 

[Patlin]

Thank you so much for your kind and detailed help!

I am hoping that my granddaughter will also join this group!

I think we are looking forward to taking it slowly now.

[Catwoman73]

Let me know if there's anything more we can do to help!