9 replies to this topic

[MissisBeki]

Hi everyone. I'm from the UK on Duloxetine 120mgs (2x 60mg nightly).

I started originally on Sertraline way back in 2012 which was mainly for depression. I was then tapered off that and on to Duloxetine in May 2018. Started on 30mg for 2 weeks, then increased to 60mg, and then in September 2018 that was increased to 120mg and I have been on that ever since.

I was prescribed it for depression which I have struggled with since I was a teenager - I'm almost 36 now, and also to help with pains caused by CFS/ME possibly Fibro too but that's undiagnosed as apparently no point diagnosing when I have the CFS/ME diagnosis as well (thanks Doc!) and the Sertraline just wasn't helping with the pain.

 

I know from being late taking doses my withdrawal kicks in within an hour or 2, I get a lot of the common effects, dizziness, nausea and being sick, derealisation I think it's called, just feeling very unwell, anxiety, cranky, zaps etc. It definitely hits me hard. I want to come off because honestly I've been on them such a long time I don't even know if any of the daily symptoms I get are from the tablets or made worse by them, fed up of putting it all down to the ME. My mental health is in a much better place than it was, I finally got diagnosed with CPTSD a couple of years ago and had EMDR, plus CBT which has helped a lot, plus a very supportive partner, I've been wanting to come off them for a while but I had to come off amitriptyline first - I have POTS and cardio wanted me to see if that reduced POTS symptoms - which it didn't. So now is the time to come off Duloxetine.

 

So I spoke to my Dr a few days ago and her plan was that instead of 2x 60mg nightly, I take 1x 30mg whenever I get up as my sleep pattern is all over the place so could be 11am,3pm or even 8pm! Then take 60mg at night (9pm is my normal time). Today was my first day doing that. It's only been a few hours but I already don't feel great. I did some googling and found this site and also the CHW site/group, and realised that the drop that has been advised is way way to much. Now I'm worrying and don't know what to do. I could take another 30mg tablet for today just so that makes it my normal dose and then start again in a few days when I've got my head around bead counting. I told her I knew I needed to go low and slow but she said the 30mg drop was the lowest they could do. I was already anxious about coming off given the withdrawals I have had previously but knowing it's such a big jump has definitely made that way worse!

[fishinghat]

Welcome MissisBeki

 

A long tough history which is sprinkled with a lot of psych meds inn general. 

 

A couple things stick out. The dropping of amitriptyline to reduce POTS symptoms is a logical one but I remember that many members here related that once off the amitriptyline these symptoms can take a long time to fade and for some did not fade at all so keep the faith it may still get better yet.

 

I would also say that your opinion that you are sensitive to Cymbalta withdrawal is spot on. The most effective means of withdrawing I have seen is a 2 to 3 year wean. It can be done faster but that can be torturous. In most countries Cymbalta is only available in 20 or 30 mg doses so big drops in doses is the standard that most doctor's use. The most practical method however is a method called bead counting. Most Cymbalta capsules contain around 300 small beads inside the capsule. By opening the capsule and removing a very small number of beads each day you can more slowly drop your dose and in smaller increments. We have a free ebook (link below) which details the steps to bead counting as well as diet recommendations, do's and don'ts, member comments and tons of research on the withdrawal as well as related medications and supplements. I would suggest you start by browsing through this document and get a feeling what options are available to you and how to proceed. 

 

We are here for you. You are not alone and we will help in anyway we can.  Don't hesitate to ask questions or just come here and vent your frustrations.

 

ebook... (If you have any issues accessing the ebook please let us know)

 

https://pdfhost.io/v/sJHePHH4v_Table_of_Contents

[invalidusername]

Hi MissisBeki,

 

My apologies - I missed your message. Had a tough time recently and I probably just didn't see it. I am glad that Hat has written some great info, but I always like to greet new members - great to have you here.

 

Thanks for writing such a detailed post and my thoughts go out to you for all that you have been through - you are in good company here.

 

I am also from the UK and I remember my GP telling me the same thing that 30mg was the smallest dose and then when I found this site and told my GP about bead counting and pulling the capsule to bits - he went crazy.. you never do that sort of thing with any medication!! He didn't have a clue. Needless to say, I ignored him and bead counted anyway.

 

So what you have been told WILL make you worse because Duloxatine has such a short half life, you will get high and low spikes taking two different doses. If you are to take two doses, they should be 12 hours apart and the same dose.

 

You clear have a sensitivity to Duloxetine as Hat said and you really should have a taper plan in place and that will involve bead counting. 

 

Cutting down from 120mg to 90mg as the first drop might not be too bad, but you will need to go slower the lower you go. 

 

Obviously it has been a few days and do not know what you are doing, but you will need to work out what equates to 45mg. This will involve opening one of the casules up, counting the beads and working out 75% - and putting the 75% back in the capsule, and do this twice daily. 

 

It is a painful process as everyone on this forum knows. Best to tip the beads on some dark flat fabric which will help to see them and give a level of friction to stop the little sods rolling about! 

 

You will also find you will run out of capsules - make sure that you get enteric capsules which, like the duloxetine, do not break down in the stomach. They need to pass through the stomach in one piece without the acid breaking the capsule down.

 

Anyway - it would be great to hear how yu are getting on and please let us know if we can help in any way...

 

IUN

[looneytune]

Get a cotton black T shirt and some proper empty capsules and source a small spoon with pointy tip

 

Empty capsule contents on to T shirt and move beads around into little pile of required beads. Once you have a pile ready for input to capsule just press down spoon into the fabric next to pile of beads and all the happy little beads jump into the spoon singing as they go. This is where the pointy tip comes in........pour beads into capsule and you are now good to go

 

I got so good and fast at this that I could have made a living doing it. Sit down, put some Simon and Garfunkel on, and make two weeks worth of custom caps

 

PS Just listen to Hat & IUN and you should be just fine

 

All the best

[fishinghat]

Love Simon and Garfunkel. Good job LT.

[LeVana]

Love Simon and Garfunkel. Good job LT.

me too!!

[looneytune]

"Hello Darkness My Old Friend" 

 

If ever an opening line was more appropriate for someone with the blues I have yet to hear it

[looneytune]

[fishinghat]

Echos of emptiness.

[invalidusername]

For any or you that know and love this song - you have to watch this version. Still can't watch it without getting misty eyed;