Hi guys, I started to reduce my duloxetine in March 2018, I came down from 30mg to 20mg. My doctor then said to taper off taking 20mg every other day for 2 weeks then off. I don't need to explain the hell to everyone here. But lets just say "wreck" does not even begin to cut it. I was going insane. I went back up to 20mg April 14th, it's been hell to get here, I can't even begin to explain it to be honest. I only didn't go back up because my mum said I should stay on 20mg and not take any other meds - that it will all be over soon. I am so thankful for her, but honestly - I'm struggling. The main thing at the moment is the sensory overload, the anxiety of being out in the world. Why is this still happening? Is it because I've been medicated for 10 years and I'm getting used to life? Is it still the withdrawal or overhand from the truama at the beginning of the year changing my meds? What is happening. Please help me. I keep having this feeling of "I can't do this anymore". And some mornings I wake up and seriously feel I can't go on. There is happiness in all of my days, but this needs to stop. I take EPA and Q10, I am very sensitive to vitamins like b complex, they make me unwell. Do I need to go on another drug to get off duloxetine? I came off it before when I was younger, but was on Pregabalin at the time and I believe this helped me alot, it was nothing like this. Please tell me what to do.
6 Months On 20Mg Hell
Posted 08 November 2018 - 10:09 AM
First of all let me get this clear.
1) You have been on 20 mg since April?
2) You are still experiencing withdrawal (hell)?
3) Do you occasionally have good days?
Sorry to ask so many questions but hold on and we will help all we can.
Posted 08 November 2018 - 11:45 AM
Welcome to the forum. Fishinghat is right, we need more information.
How long as it been that you are on dulox?
You speak of trauma when they changed your meds, what were you on? And how did you feel?
Has dulox ever made you feel good? Thank you Vicky
Posted 10 November 2018 - 02:11 PM
Hope to hear back from you with your update. Obviously we are all eager to help you through this.
I am having the EXACT same issue as you. I am 4 weeks on 10mg and just wanting off, but out of nowhere are these days as you call "sensory overload" and the "cant go on" feeling. The tiniest thing sets off an anxious flash. Not having had anxiety this bad for many months, it is slowly chipping away my defences that I have painstakingly build up. Every day has seemed like I am watching all my efforts, all my CBT training, all my learning of my condition just fade away.Like it has all been a waste of time.
I know it is crippling Vicky. But we can support you wherever you are at. Even on my worst days I will come here to see what I can do - and the knowing you are not alone can really help sometimes...
Posted 11 November 2018 - 11:20 AM
Hi guys. Sorry to take awhile still working out how to use the site and find my post. I'm going to start from the beginning. When I was 16 I was took down with glandular fever and M.E, I was severely unwell and mostly housebound. I quit college, and was eventually diagnosed and put on Duloxetine and Pregabalin. They gave me my life back and gradually I got back to college when I was 17.
Fastforward to age 20 (2012) the doctor wants me off the meds, they cost money and I am "well" now. I come off the duloxetine over a few month from 30mg (the pregabaling helped me alot to do this), I ended up bed bound again. I went back up but due to other stresses in my life I never recovered the same from the drug help, I spent the next 3.5 years in bed and rarely in a wheelchair when I could manage a very short doctor visit, felt like torture to leave my bed. Jan 2013 - April 2016.
In April I did The Lightening Proess for ME and Fibro, it changed my life - I went in a wheelchair for the 3 days course (I told the practitioner there was no way I could stay 4 hours the first day but I did). By the weekend I was walking again. The LP is a neuro linguistic programming course and I don't wish to debate on it because I'm not affiliated I'm just telling you what happened, from my heart. It cured me, did recovery happen overnight? No... it took alot of practise but I could walk and was virtually pain free.
For the last 2 years I have become a genius at my Lightening Process techniques for my physical health and I am fully recovered, however I no longer wished to be on all my medications. I was on Duloxetine 90mg when in bed, then reduced to 60mg and down to 30mg by March this year. I came off the pregabalin and LDN, but wonder if coming off the pregabalin before the Duloxetine was a mistake, because the duloxetine reduction has been hell for me.
March comes along this year and I'm only on Duloxetine 30mg, I'd always been able to consume alcohol while taking the other meds (seems crazy now) but this time, I drank and went into what can only be described as psychosis. It scared me so much I decided I needed to address the duloxetine addiction I had. I saw my doctor who told me to go to 20mg for 2 weeks, then 20 every other day then off.
March 4 2018 30mg to 20mg.. the next 6 week can only be described as hell. I was like a heroin addict, I couldn't stand the light, I couldn't take in information, I thought I was dying. My ears were full I was almost deaf, feeling drunk was normal now. Crying, shaking, anxiety - part of my life. I wanted to die. My mum has been through my entire journey with me and after much deliberation I went back to 20mg, even though without her I'd of been straight back to 30mg and back on my pregabalin.
April 14th 20mg to now.. its been hard, the 20mg stage has come in ebbs and flows. I thought getting over the initial phase was enough but at about 4 and a half months its like I had to adapt all over again for some reason, these past few days have been slightly easier and I'm praying it continues, I haven't been waking up with a hollow feeling like I want to die as much.
What I hate the most is the sensory overload, I feel like I'm going to shut down. Visually everything becomes too much. Thought there have been many improvements I can't believe how long this is all taking. The anxiety when I go in my car or far from home is insane - I hope this covers everything
Posted 11 November 2018 - 11:49 AM
OK - that was a lot to take in - and first up - my heartfelt congratulations for what you did on the Lightening Program. Sounds like it must have been a lot of effort and struggling on your part.
Your doctor did a number on you with the withdrawal plan - if I were to guess, he/she didn't know about bead counting, nor the nightmare that is this drug. But whatever you do, do not come off these every other day. They are a short half-life and they are down to about 20% within 24 hours, and less than 10% by the end of day 2. They give, from evidence, "mini-withdrawals". Stick to the same dose every 24 hours and bead count. The rate at which you do this needs to be carefully determined.
Given that you, like me, have nasty episodes of anxiety as a result of the withdrawal, I would suggest getting back on the Pregab if it worked for you. There are two others which FishingHat recommends that have helped a lot of forum users - hydroxyzine and clonidine - this is certainly an option.
You have for sure got nasty withdrawal and you will come off this - trust me.
As you have been on 20mg for so long, I would also not suggest you go any higher up on the dose as it will only make your journey longer.
My suggestion would be for you to find a supporting (non-SSRI and non-addictive) drug such as pregab, hydrox or clon. Get yourself somewhere near stable on this, and then begin a withdrawal plan by bead counting VERY slowly. Try to avoid benzos too if you can, as these, after a while, will give you another withdrawal to consider.
We can consider the exact rate once you feel better - one step at a time. We have all been there - some of us (me included) are still there, so you are in the right place for a lot of love and support. FishingHat is our resident "Einstein" and Gail is our "Love support line". There are others of course that always pop in to help, and no idea where I fit in, but I do what I can
Keep us posted dear Vicky and God Bless.
Posted 11 November 2018 - 02:13 PM
Thank you so much for your time, love, and support. What a lovely community this is. I will seriously consider the pregabalin again. It seems such a shame when I've gone 6 months but I don't know how I'm going to be able to reduce again without medication. I'd have to feel completely balanced for at least 6 month to even want to try at this rate.
I am wondering whether to ride out the storm, I might see how I go these next few weeks. I read elsewhere that this change can last between 6-8 months. I'm 10 days from being 7 months on this dose. Hoping hoping I will level out soon.
Posted 11 November 2018 - 05:05 PM
What a story Vicky. My heart goes out to you. IUN covered most everything. I do agree that you should start stabilizing soon. If you want to get a better feeling for how you are doing just start a journal and keep track of how many hours a day you feel decent, maybe not perfect but comfortable. After a couple weeks it will be obvious how fast you are improving and how much longer it may be to stabilize PLUS it is nice to see for sure that you are improving.
There is only one cure for this...Time and patience
Posted 12 November 2018 - 10:14 AM
I'm with IUN here, if Pregabalin made your withdrawal easier, I wouldn't hesitate to take it and stabalize.
When it's done, you may bead count your way down more comfortably.
Or just wait to see how it turns out, I figure that you've waited long enough though. As Fishinghat said Time and Patience
Come by anytime you wish, we'll all be here for you.
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Posted 16 November 2018 - 05:55 AM
Thank you all so much!
One quick question: when I do begin to reduce by opening the capsules, I've noticed different brands have different amounts inside them. My chemist said they can try to get me the same brand but there is no guarentee. How would I go about reducing with this issue? And how many pellets do I remove in each time frame
Posted 16 November 2018 - 10:46 AM
You wont have any issues with the beads if you get different brands, you will just have to do more counting.
So you are on 20mg, and lets say there are 100 beads in each 20mg capsule. Now think of this in terms of dosage;
100 (beads) divided by 20 (mg dose) will give you 5 beads per mg. This will be the formula for THIS brand.
Therefore 95 beads gives you 19mg, 90 beads gives you 18mg and so on.
All the time you tie in the mg with the amount of beads you will be fine. So one more example. Lets say you got as far as 11mg which woud be 55 beads of the above formula and you get a different brand of 20mg.
Count the beads in the new 20mg and do the same formula as above. Lets say there are 168 beads in this one;
168 divided by 20 = 8.4 - always round this up... so 9 beads per mg.
Then you know you were on 11mg on the last brand, therefore 9 beads multiplied by 11 mg gives you a new bead count of 99.
Really hope this makes sense
Posted 16 November 2018 - 11:03 AM
Sorry Scrat, I don't share the same opinion. Specially with Cymbalta, you should always stay on the same generic. Let's say that Cymbalta is 100% duloxetine. Another generic might be 90% duloxetine and another one might be 110% duloxetine.
The switching might cause unwanted symptoms. My doctor is super vigilant on this and has had patients run to the ER for this.
The government allows a 10% margen, more or less. That can play a trick on you.
Posted 20 November 2018 - 06:51 PM
Hi, thank you all. I live in the UK so I am at the mercy of my GP and pharmacist generally. I wouldn't know where to start to buy online, any suggestions?. I also want to add that every prescription I get has a different brand and this now seems a huge problem given the above info
My pharmacy said they cannot guarantee brands from month to month
Posted 20 November 2018 - 07:17 PM
This is the issue in the UK Vicky.
The pharmacies are usually big chains, such as Llloyds, Tesco, Asda - and the pill companies send reps round to all the big wigs to sell their own generic pills. Whoever is the cheapest gets the gig. They all undercut each other which is why they are always changing. Sometimes it is the demand for supply, but more than not, it is the first reason.
GP's will not admit this, but they will also get pushed to "sell" one over another because it is cheaper, and thus help keep their NHS budget within the regs. If they go over their budget, they get their wrists slapped. A lot will just palm the "flavour of the month" AD off on you without thinking twice. I can't tell you how I know this, but lets just say I have thumbs in pies here in the UK
Posted 21 November 2018 - 05:38 PM
Posted 21 November 2018 - 05:49 PM
Quick search for you - Actavis - they are a big and well-established pharm....
This is their main site listing the availability;
Surprising that they are not that much more than a prescription charge... worth noting for future reference
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