Gumtree: Cymbalta taper

[KarenB]

That's good - we advocate calculating the percentage off the current amount rather than the original dosage.  Looking at that last post, it seems your symptoms had been gradually building up since mid December and now you've reached tipping point.  Definitely time for a longer hold.  Are you still doing regular meditation? 

 

You'll get there Gumtree, one day at a time.  Hopefully you will now be starting to pull out of the worst of it.

 

Karen

x

[Gumtree]

Thanks Karen, yes I'm starting to feel a bit better but taking it steady. Yes I do a daily meditation of 15 minutes using an app called 'Headspace'. I've done the 30 foundation sessions and am now doing a series on sleep. It's really good.

[Gumtree]

Such a tough time.  Wow, this has been really hard going. I've worked out that I'm pretty sensitive to changes and even though 5% for three weeks seemed reasonable given that 10% is an acceptable taper rate, I've had real problems managing with everyday life.  

 

I've cut the taper rate down to 2.5% and am holding it for three weeks (at least) at a time.  I started in December 2016 with 577 beds per dose and my current dose is 365beads.  I do feel like I'm making progress but it does affect me badly.  

 

My memory is totally shot to pieces and I'm not able to 'cover up' anymore.  I have no recollection of what happened yesterday unless I have taken a photo on my phone, and there are conversations I know nothing about.  I mostly have no idea what day or date or time it is.  There are lots of things I'm not able to do, particularly around thinking and decisions. I am not able to multitask and can't cope with interuptions or changes to my routine of doing things.  I've tried writing "to do" lists and notes to myself to remind me of important things but the thing is I DON'T REALISE TO LOOK FOR A NOTE!!!  It sounds funny but it's not.  I sometimes find notes around the house, in my handwriting that remind me to do something.  I read it, turn around to get milk from the fridge and it's forgotten until I revisit that spot again later.  

 

My speech is affected sometimes and I've had some tics as well.  I'm really quite scared that my brain has now got a permanent injury from the withdrawals and I might not recover it.  I think there may be a significant overlap with my epilepsy so the withdrawal could well be kicking off some seizure activity that can have the above effects as well.  My memory issues have got worse since I started tapering, and not recovered or returned even when I hold.  I'm really scared that this is now my life (How was your weekend? Um, I don't know) and I won't ever recover.  

 

I'm at the awful point where I will NOT increase my dose, but I'm locked into counting beads right now as my dose is not a 'set' dose - it's between 60mg and 30mg.  It feels like my best case scenario is to try to slowly get down to 30mg, then stay on that set dose for some time (or ever) so that it is more easy to take.  I fear getting 'stuck' at some point lower and then being locked into bead counting forever but not able to get off it.  I'm so despondent I almost wish that I never started tapering now, it's just so hard and affects my life so badly.  I'm not employed any more.  

Edited June 25, 2017 by scallywag
insert paragraph breaks for readability

[scallywag]

Gumtree -- sorry you're in such a rough spot these days. A couple of thoughts about your post:

 

Notes - In times when I've been particularly cognitively challenged, I've forced myself to write notes in only one notebook. No scraps of paper, no sticky notes, ONLY in the notebook.  It helps if it's brightly coloured and small enough to carry with you. 

 

Dose - Have you investigated compounded doses? You'd be able to get your current dose without bead counting. By my calculations (I'm also taking Cymbalta) you're at about 40 mg.  You might be able to reduce the cost of compounding by using the commercial 30 mg capsules with a compounded 10 mg for an extended hold.

 

 

[Gumtree]

18 hours ago, scallywag said:

Gumtree -- sorry you're in such a rough spot these days. A couple of thoughts about your post:

 

Notes - In times when I've been particularly cognitively challenged, I've forced myself to write notes in only one notebook. No scraps of paper, no sticky notes, ONLY in the notebook.  It helps if it's brightly coloured and small enough to carry with you. 

 

Dose - Have you investigated compounded doses? You'd be able to get your current dose without bead counting. By my calculations (I'm also taking Cymbalta) you're at about 40 mg.  You might be able to reduce the cost of compounding by using the commercial 30 mg capsules with a compounded 10 mg for an extended hold.

 

 

Th thanks scallywag. Bad day today so can't write much. Will try this out. Need some sleep to brain repair. Period and taper is bad combo for me

[ShakeyJerr]

On 6/22/2017 at 9:10 AM, Gumtree said:

My fear is that I started on antidepressants at age 19 and have been on one type or another every day for 28 years.  I don't think my brain is going to grow back - well maybe a little, but not much and definitely not quickly.  

 

You are going to heal, Gumtree! The brain is a remarkably amazing creation. Yes, you did start the meds early in life. And yes, you have been on them a long time. But you are working your taper properly and treating your body the right way. And you have a great support system here on SA. You are making all the right moves!

 

I'll be praying for you!

 

SJ

[ShakeyJerr]

On 6/22/2017 at 8:45 AM, Gumtree said:

Such a tough time.  Wow, this has been really hard going. I've worked out that I'm pretty sensitive to changes

 

As many of us have discovered, Gumtree, the recovery body is usually not a fan of changes - it seems to like stability, even if that stability is bad.

 

What might help you get through this fact is keeping a journal. As scallywag suggested, keeping your thoughts in one place is a good idea. You can even use your thread here in SA to journal.

 

What you will want to be recording is your symptoms over the first few days of the taper, versus how you feel a week later. I'm suggesting that from personal experience. The first few days of any change for me (in my case, supplement, dietary, or activity changes - I am past my taper [which I did very poorly, too quickly, and without the help of this site, so you are already in a better position than I was]) usually goes poorly, but then I stabilize, and then by the end of the week I am feeling the benefits.

 

But as everyone here will tell you - slow and steady! Do not race to get results!

 

SJ

[Gumtree]

Thank you SJ. I really need to see some light at the end of this tunnel at the moment. I'll keep at it slowly but prob need to hold again for a while to get myself together. Hanks for your support, even with good support at home it's a lonely ride being locked inside my head and good to know others really understand. Thank you 

[Gumtree]

Thanks SJ, as you as Scallywag suggested I've dug out a notebook to keep track of things. I will def track my symptoms and water intake as I think being a bit dehydrated this weekend sent me down fast. And will be good to remember and look back at what I've done. Thanks to you both. I have surfaced today and managed a shower and some food but will have another quiet day I think. I managed to sleep last night without crazy dreams and feel better for it. 

[KarenB]

Sounds good Gumtree, doing those small but important self-care things is what will get you through.  A quiet day sounds lovely.

[Gumtree]

DEHYDRATION

I spent time watching a friend play sport on the weekend and I didn't drink enough fluids. I think that sent me into a quick spiral. I read somewhere about Cymbalta and blood plasma level so obviously if my fluids were down then the concentration of cymbalta was up (??). Anyway, i seem to have trouble regulating my body temperature at the best of times but being a bit dehydrated made me really ill. Massive panic, diahorrea, vomit, headache, body shakes, fast heart beat. It was horrible and all I wanted to do was sleep but I would doze slightly then as soon as I felt the 'drop' into sleep, I would panic, jump and wake up. It was exhausting. I tracked my water intake/urine output and had coconut water for the electrolytes. It lasted about 12 hours. The hardest thing was trying to make sure I didn't vomit the next cymbalta dose or I'd be in a worse state. I'm feeling a bit better now, still quite tired and weak but bad symptoms subsided. I will have to make sure I keep my fluids up during the day and not get overheated. It was horrid. 

[ShakeyJerr]

Hydration is extremely important, Gumtree. Especially if you are having the runs. Also, anxiety tends to ramp up the urine output (I have no idea what the science is on this, but I have life evidence and did some research that bears that out).

 

10 hours ago, Gumtree said:

all I wanted to do was sleep but I would doze slightly then as soon as I felt the 'drop' into sleep, I would panic, jump and wake up.

 

Very common in recovery. Don't let it turn into a secondary panic when this happens. Just accept it as part of what you are going through as you heal.

 

SJ

[Gumtree]

What a horror month its been.  Waking up before dawn in a panic - thought it could be cortisol spikes.  I darkened the room and use an eyemask but still happens and its a horrible way to start the day.  Had a major meltdown this week.  We were due to fly overseas for a relaxing week away. About one hour beofre we left for the airport i had a full blown terror panic attack and did not/could not go.  My partner was devastated and i feel awfully guilty.  The doctor wanted to increase my dose or give me valium, and i declined both.  What a horrible process this is.  

[ang]

Hello gumtree.        Thanks for following me.        I know how horrible it is waking up in horror.   You are doing so well, I only read your last post, but wow, you are doing so well.        Horribly difficult, and brings back memories for me, all orrible.           
Hang in there, believe me, it is WORTH IT.                   Dont feel guilty about anything, you are recovering.    

[Gumtree]

A long time between posts. I think I’m stuck, and don’t think my brain can manage to get off it safely which is horrible because I am bead counting and it is arduous. I am stuck on 350 beads and have only gone down by 15 beads in the last year.  My brain is super sensitive to changes and I don’t know how I’ve got through the last year, the withdrawal effects seem magnified each time I drop, even by a tiny amount.  I’ve lost hope that I’ll ever be free of it.  So my goal is to keep crawling downwards and get to the equivalent of a 30mg dose (about 290ish beads) which at least means i can stop counting and just take a prescribed capsule.  What a horrible, sinister drug this is. It has stolen so much from me. 

[ChessieCat]

Thank you for coming back to update.  So sorry that you are having difficulties tapering.

[Altostrata]

Hi, Gumtree. Are you reducing by taking out one bead at a time? What happens after that?

[Gumtree]

5 hours ago, Altostrata said:

Hi, Gumtree. Are you reducing by taking out one bead at a time? What happens after that?

 

Hi Altostrata, I did several drops at two beads at a time. It was okay for about three days then I got terrible nocturnal panic attacks, actually waking up in the middle of an anxiety attack.  Headaches, nausea and confusion.  I was stunned that it would occur with such a tiny amount. I did a two-bead drop and held for 8 weeks until I felt better again and strong enough to drop again. I managed to decrease by about ten beads but I’m feeling pretty defeated to be honest. 

 

[Gumtree]

UPDATE 7 YEAR TAPER ANNIVERSARY

started my taper off in dec2016 and celebrated 7 years of slow progress in December 2023.  Down from 60mg Cymbalta dose to 30mg dose by counting beads and doing microtaper of about 3 beads drop per month. 
 

Went to the Doctor to ask for a 30mg prescription so I could stop all the bead counting for a while.  I usually get 60mg prescriptions with five repeats so I don’t have to pay for a visit each month just to get a prescription.  Dr said in Australia they can only give a one month prescription (not give prescription repeats) for a 30mg Cymbalta dose as it’s not considered a therapeutic dose and is only used usually for a month before people see the Dr again and step up to a 60mg dose. 

I decided to keep with the 60mg dose and keep counting. 
 

 

 

 

 

[Gumtree]

MANUFACTURER CHANGED NUMBER OF BEADS PER CAPSULE SO I HAVE TO RECALCULATE MY COUNT

**putting this here in case anyone else has issues**

Only discovered this change as I felt very off. Still got same prescription, brand and box but obviously manufacturing for the name brand has been changed to a different factory/machinery that has different beads by weight. 
 

MY PROCESS

I started my taper over 7yrs ago from 60mg and have been doing tiny drops as I’m sensitive to changes. I am in Australia and get the name brand 60mg capsules with the microbeads. I empty each capsule each time then count the beads I need to take. When I started I counted several capsules and took the average which was 577 microbeads in 60mg. I’ve worked down from that and am now at 280.

 

ISSUE ARISING

Felt off this week so asked my wife (who counts my caps) if she’d done a drop because I didn’t feel good - but no. She went back and counted a full capsule from a new pack and it contained 460 for a 60mg! Opened a new box to do the same out of interest (I have stock) and that had 509 microbeads. Now that is a big discrepancy (so glad I’ve been counting).

 

PROBLEM

I don’t know if the 577 dose (seven years ago) is equivalent to a 460 dose today.

That is very worrying and I can think of only two possible explanations:

 

TWO SOLUTIONS

Either The capsule filling at manufacture is getting sloppy and there is massive variance

The microbeads have changed size during manufacture and therefore 460 is equivalent to the old 577.

 

ADJUSTMENT

If (1) is true, then I just stick to plan and be thankful I’ve been accurate counting.

If (2) is true then my adjustments are wrong and I need to adjust by the percentage. ie part/whole x 100.  I do not know which is true.

If I take option 2 and try to mimic the same percentage it would mean that 280/577x100 is 48%. If I take that approach using the recent 460 as a full dose then 48% of that is 220 beads.