The Duloxetine Process – Weaning off strong antidepressants

Depression, Help for sufferers, Insomnia, Medication advice, Posts, Withdrawal Syndrome

I know its been a while since I last posted. We were moving house and getting our lives together, and then things just went even more south than they already were. This was back in November. Fast-forward past Christmas and here we are, five days after an appointment with my new GP, and 17 days until my birthday. I’e got a trip booked for my birthday; a 3- day visit to Edinburgh with my partner and my mum. I’m really excited, but if I am anything like I have been for the past few months, then it really isn’t going to be a fun experience.

The Problem:

For a while now (a good 6 months or so), I haven’t been sleeping. And I mean, not just ‘oh no it took an hour to go to sleep last night,’ but more like ‘ oh no its 7am and my partner is getting up for work, and I still haven’t been to sleep yet’. It literally took the ENTIRE night for me to calm down enough to sleep, and then, as if by magic, I would sleep all day.

I’m still none the wiser as to what caused it. I’ve been through every possible scenario and cut things out of my life one by one, but still, nothing has worked. Until now.

What I changed :

Heres a handy little list of all the things I’ve done this year to try and help…

  • Reduced caffeine, only drank it before 12 noon except for the odd cheat day.
  • Reduced sugar consumption.
  • Tried to see the morning sun where possible (this reduces melatonin levels during the day, which makes you more awake, and in turn, increases levels at night when it is dark, making you sleepier).
  • Get more exercise during the day (where possible).
  • Increased veggie consumption as much as possible and reduced everything I have an intolerance to (mainly meat and dairy).
  • Completely cut alcohol (I wasn’t much of a drinker anyway, due to my meds).
  • Aimed to be in bed by a decent time every night.
  • Opted for a bath or shower before bed instead of during the daytime.
  • Eat earlier in the evening and give a lengthy time to digest before bed.
  • Reduced screen time before bed and avoid picking up a book (I would literally read the whole thing in one night and then wonder why I was still awake).
  • Changed GP practices.
  • Got new pillows.
  • Stopped drinking Pepsi Max (our family has a bit of an addiction to it, and it was only recently that I realised it contained quite a lot of caffeine – definitely more than I expected.)
  • Went completely vegetarian.
  • Switched to a Chicory and Barley drink instead of coffee, and rooibos tea instead of normal tea (these taste the same but are completely caffeine free, as opposed to decaffeinated products, which still contain trace amounts).
  • Tried bedtime meditation.

Despite making me a healthier person, none of this solved my sleeping. Fun times. Several days ago, I realised it might be a side effect of my antidepressants, but only after I’d noticed a change during my withdrawal process.

The turning point:

I ended up in A&E just before Christmas, and was given a crisis team number to call if I felt suicidal. Hint: I felt suicidal pretty much every day, so this was pointless. However, in the first week of January, I had an accidental shortage of antidepressants. I ended up waiting 3 days before I could get hold of any, and at this point, I was severely suicidal. I rang 111, but they transferred me to the crisis team rather than getting me an emergency prescription. Although I was suicidal, I wasn’t a danger at that point, as my partner was there to look after me. What I needed was a dose of my meds. In the end, I sorted it out, but calling my crisis team actually triggered my GP to get in touch and discuss changing my medication altogether .

A week later and I was booked in for an appointment (she did try to get me in sooner, but I was a mess and it took me a while to call her back- oops!).

We decided together that being on two different high doses of antidepressants per day and no pain relief was a stupid mistake; and that I should really try pregabalin, as at this point, the benefit of taking it would outweigh the cost of the side effects. However, this meant that I also had to wean off of one of my antidepressants. She sent me away with a new dose of pregablin and a half dose of duloxetine.

The plan:

Weaning off duloxetine is notoriously difficult. The side effects of taking it are awful, but the withdrawal syndrome is a hundred times worse. It is one of the hardest antidepressants to get off.

I have been on it for 3 years.

My doctor had told me to cut it down by half immediately, and stay at this level for a while, however I knew that the side effects would be too harsh for me (I’ve had a few times in the past where I ran out and only took half a dose, and within the day I was feeling awful).

Instead, I decided to reduce it in quarters.

The process:

So far, I have reduced once; from my original 80mg to 60mg. This has meant, however, that I’ve had to open up the capsules and separate out the teensy tiny little duloxetine balls inside. If you have ever looked inside one of these capsules, you will know just how difficult this is.

I recommend using a plate, tray, or bowl to catch the balls should they escape (trust me, they have a life of their own).

You can either count them out individually (a difficult task) or, if you are lazy and can’t be bothered to waste half an hour every morning, visually estimate approx. half the balls. Note: if you are very sensitive, this might not work for you. Micro scales, which you can order online, may help you get a more approximate dose, without wasting time every day. Once you have removed what you need to, put the remaining balls back into the capsule, seal it, and get rid of the rest. Make sure the leftovers are put in a medical waste bin, as they are toxic and can hurt wildlife (or your own pooch if they lick them up from your kitchen counter). 

Now, how much should you be reducing by? Here is my quick (ish) guide…

Step 1: figure out a plan with your doctor. Do not, under any circumstances, withdraw from duloxetine without first talking to your doctor. They can give you a plan which will suit you, but don’t be afraid to extend it if it sounds too quick for you. Please also consider that, like my GP, your doctor will probably prescribe you something to help ease your symptoms. In my case, this was pregabalin, and it has been working surprisingly well.

Step 2: Set yourself a personal schedule, as to when and by how much you will be reducing. This is important to prevent you from relapsing to your original dose and also making sure you don’t make your body even more ill by stopping too fast. If, like me, you are a creative type, you might choose to make a pretty looking planner or poster to remind you, but don’t worry if not. A simple post- it note outline will suffice.

Example:

My plan:

full dose= 80mg, cut by 1/4 each time (20mg).

>Friday 10th Jan, 1st change= cut by 20mg to 60mg 

>Maintain dose for a week or until comfortable

>Friday 17th Jan,  2nd change= cut by 20mg to 40mg (half dose)

>Maintain dose for a week or until comfortable

>Friday 24th Jan, 3rd change= cut by 20mg to 20mg

>Maintain dose for a week or until comfortable

>Friday 31st Jan, 4th change= stop completely

Step 3: Start the process as soon as possible. Follow your plan as closely as possible, but try and be flexible too- if you feel like you are going too quickly, i.e; you have withdrawal symptoms that are uncomfortable, reduce by a smaller amount and extend your waiting time.

Remember, this is a very intense process that you may find difficult at some points. It isn’t your fault by any means, so don’t beat yourself up about it. Keep the communication with your doctor open and tell them immediately if your symptoms worsen. The chances are your body just needs a little bit longer to adjust.

Step 4: at the end of the process, celebrate! For me, I have my Edinburgh trip booked. This coincides nicely with my end date, but I have to remember that my body may need a bit longer to accept the changes, therefore I am planning an alternative reward to keep me going if I am not done by then. This can be as simple as buying yourself that cute top you’ve been wanting, or whatever you may feel motivates you the most. After all this hard work, you definitely deserve it.  For me, it will be a much- needed new pair of jeans, and a complimentary bar of chocolate!

Where I am at now:

My sleep still isn’t perfect. I am still sleeping in late and it still takes me about an hour to go to sleep, plus last night I didnt sleep until after 4am. The pregabalin makes me drowsy, which helps a lot, but until I have completely weaned off, I do not expect to be completely better. I have always struggled to sleep, so I reckon I always will.

However, I have successfully slept three nights in a row, and even though I still suffer from ‘some’ insomnia, I already feel significantly better. The best bit? It’s only been five days since I did my first reduction.

I hope to start up blogging properly again soon, if not straight away; but this time I won’t make any promises. If it happens, it happens. If not, I can’t blame myself. I would like to write some more about pregabalin, duloxetine, citalopram, naproxen, codeine, and all the other meds I’ve tried, plus some more info into support animals, so keep an eye out if you’re interested in those.

Let me know what you think- are you planning to do this, or have you had your own withdrawal experiences before? I’d love to hear your experience, and you might even be able to give me some advice for mine. I will eventually be coming back to this post to tell you all how it went, so I will publish any good ideas you have and give credit to you guys.

Lost of love as always,

Ellie x

This will help if you feel suicidal.

Depression, Help for friends, family, and significant others, Help for sufferers, Posts, Uncategorized

Having been away on a volunteer trip for the last two weeks, I somehow managed to mess up my antidepressants. Oops. I’ve been in a bad way recently, and most of my blog is on hold for now. However, I thought it was urgent to post this, so here goes…

This is what you should do if you find yourself in a similar situation; feeling depressed or even suicidal.

1. SEEK HELP IMMEDIATELY.

Call a friend, a family member, or a helpline.

Having someone to talk to can help calm you down and rationalise what may potentially be an irrational bunch of thoughts. And besides, at least it gives you someone to rant to! Getting help can make a difference in what could potentially be a life- threatening situation.

I’ll add some useful helpline links at the bottom of this post for anyone who may need them, but a quick Google can do just as good.

2. Be mindful.

Practice breathing, focusing on your body, and acknowledging (and then dismissing) your thoughts. By spending a few minutes doing this, you can help yourself to relax and think more rationally. This is especially useful if you have no one there to help and have to rely on your self to calm down.

Another mindfulness trick I like is to count out loud three taps of my dominant thumb onto each finger of my dominant hand, starting at my pointer, working to my pinkie, and then going back along to my pointer again. Basically make a pinching motion three times with each finger and repeat until you feel calm. This helps you to focus on something physical, grounding you to the present.

3. Get to your safe space.

It is very important to find your safe space, somewhere where you can relax and feel comfortable. Often, this will be under your duvet, in the bathroom, or in another quiet place. However, if you are feeling suicidal, it is important that there is someone else available to you if you need help. I would advise that you have a ‘secondary’ safe space, at a friend’s house, for example, where you have the added benefit of another human for comfort and support.

When feeling severely depressed, this is a good method of reducing any external stimuli, which may otherwise impact any anxiety or bad thoughts that you may be experiencing.

4. Treat yo’self.

Eat your favourite food, read a book, listen to your favourite song, or watch a film. Whatever it is that helps you to feel better.

Personally, I like to hide under my bed covers (safe space) with a good book and loads of food (think: ice cream, chocolate, cheese, crisps), or I’ll run a bath and sit mindfully whilst it is filling. Locking myself in the bathroom with the noise of the tub filling gives me a chance to get away from the stress of the ‘outside world’.

Anyway, that’s all for today, but I’d like to round up by asking my usual request, let us know if you have something to share! And one last thing..

You are loved ♡

********

International:

https://www.iasp.info/resources/Crisis_Centres/

https://www.befrienders.org/need-to-talk

UK only:

https://www.samaritans.org/

https://www.mind.org.uk/

********http://chronicallyme.org

Five things I don’t need to worry about (but do anyway).

Depression, Help for sufferers, Posts

Keeping this short and sweet, here is my take on five things that most fibro sufferers will worry about at some point (but have no reason to).

1. Going out by myself.

I went through a stage last Christmas where I fainted quite a lot. I put this down to either medication, stress, or some unknown co-morbidity. Regardless, it became an issue. I couldn’t go outside without a friend or family member because I worried that I might faint. This anxiety got so bad that it caused panic attacks. I’m much better now, but I still worry when I am by myself in public.

2. What will happen if I choose to stop my meds?

I take a type of SNRI antidepressant which has a dual effect in dulling my pain and lifting my low mood. Unfortunately, these types of drugs can cause serious addictions and, if I choose to come off of them, I will have severe withdrawal symptoms. Don’t worry, I’m not an addict and I don’t have a drug problem, however my body sometimes becomes unresponsive to the drug, meaning that I have built a tolerance for it. Unfortunately, this is a common marker in predicting future cases of withdrawal syndrome. On the plus side, however, there is plenty of support available and my doctor will ensure that I withdraw as smoothly as possible.

3. What if people just think I’m lazy?

I can’t deny it, I sometimes feel like I’m just a lazy, unmotivated hypochondriac. If I think that, then what must others think? To an outsider, fibro must seem really stupid, and I’ve had loads of people judge me to be lazy (even some really close friends!). Unfortunately, it turns out that I’m not just bluffing my way out of hard work, however I’ve had way too many people comment otherwise. From overly personal queries about my finances to judgmental references about being ‘bored’ or ‘lonely’, I’ve heard it all. All I can say is this, I do get bored and I do get lonely, but I can’t really do much about it when I have no way of getting out of bed. And when it comes to finances, well, I’d be the first to jump up at the opportunity of a job, except I can’t jump up in the first place. At the end of the day, though, it doesn’t really matter as long as I am content and not harming anyone.

4. Fibro will stop me from getting a job.

Like I’ve just said, I would love to have a job. It would keep me busy, it would keep me fit, and it would keep me motivated. Most importantly, however, it would mean that I have enough money to live off. As it stands, there aren’t any jobs which are flexible enough for my disabilities. I’d like to be able to explain this to all of those judgemental people out there who have had something to say about my current lifestyle, but nobody really wants to listen. Therefore, I’m currently working towards getting a job which will be suitable, hence why I have started this blog. At the moment though, I need to get my game face on.

5. The people who matter to me will be scared away.

Well, what can I say? Over the last year I’ve had a big change in friends. Not only is this due to leaving for university, but also because those who I thought were there for me when it mattered most weren’t. On the other hand, I’ve built a beautiful family out of those who did stay, and even found my wonderful boyfriend, who has always been there for me despite the circumstances.