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

One year on…

Depression, Fitness, Lifestyle, Pain, Posts, Update, Work

It has been just over a year since I last wrote a post, and, in that time, a lot has happened. You might have known that I dropped out of university last year, following a dip in my health over the autumn and winter. I had a bad experience living in university halls and ended up moving into a rented house with my partner. Shortly after, I realised that university wasn’t for me, and officially finished just after Christmas. Around the same time, I had a few new additions to my medication, a couple of emergency trips to A&E, and a major loss in my social circle.

Having lost most of my friends upon leaving university, and generally having most people ghost me due to my fibro, I was left with barely anyone to talk to. The rest of my social circle is either too far away, or just doesn’t really care.  Luckily, I still had my best friend in the form of my partner, Joe, but other than that, I was incredibly lonely.

Well anyway, I decided to take the advice I had been given, and find my company elsewhere. On mother’s day, I became a mother myself.. to two gorgeous little kittens, Cleo and Layla. As therapy animals, I am allowed to have them in rented accommodation, even if it is otherwise not pet- friendly. As my GP had advised it, my Landlord said it was okay.

20190703_161451

Cleo and Layla have literally kept me alive this year, and have been there for me constantly. In fact, they are currently perched on the end of my bed, sleeping as I write up this post. I will definitely be writing more about them soon, as I have been planning to do a service animal post for over a year now and, to be honest, I could ramble on about my fur-babies for hours.

This isn’t the end of my story though, as there has been a lot more that has happened this year.

Joe has settled nicely into a job now, and we have, just about, got a steady income. However, since I can’t hold down a job, we have had a rough time with money troubles this year, too. At one point, we couldn’t even afford a weekly grocery shop, and Lidl seemed expensive. All things considered, we needed to cut down on our expenditure. It’s now nearing the end of our (quite expensive) tenancy, and so our miraculous plan was to move house, to somewhere cheaper. Funnily enough, the house we found is only 12 doors down from where we are now, is even more beautiful, and is £250 cheaper per month (bargain). I’m hoping that these savings will give me the opportunity to start up my own craft shop, and slowly but surely help us to progress.

Over the last year, I also gained a lot of weight. Having dropped out of university, I suddenly wasn’t walking to lectures on a daily basis, and having Joe’s car meant I didn’t have to walk anywhere else, either. As useful as it is to not be losing as much energy over travel, it also meant I wasn’t burning off as many calories, and these started to build up. Over the space of the year, I went from 9 stone to 13 stone, gaining almost half my original bodyweight in fat. Not only is this unhealthy, it made my fibro more difficult to cope with, and made my self esteem plummet even further. It wasn’t until I had to care for the kittens, and started to form a daily routine, that I started to lose it again. Since August, I have now dropped back down to 11 stone, and I am hopeful that I will continue to lose some more.  Before the kittens came along, I spent nearly every day in bed, and only got up for a few hours a day, when joe came home in the evening. I felt that I had little to no reason to exist, so would hide under my duvet all day, feeling poorly. This went on for months, hence why I put on so much weight.

Note to self: hiding under the duvet doesn’t work for more than a day or so. Eventually, you have to come out.

Thats not the only trouble I had this year, either. Say hello to my nasty little friend, insomnia. Although I have always struggled to sleep at night, it has now reached ridiculous levels. I used to need between 1 and 4 hours to go to sleep, but now, I can be still awake when joe gets up the next morning. It doesn’t happen every night, but still occurs several times throughout the week, leaving me to oversleep through the day and make the cycle even worse. Fun.

I am in the process of applying for CBT, and I am also thinking of asking my GP about sleep medication. For now though, I am completely avoiding caffeine, going to bed early, eating healthily, and trying to get as much fresh air and exercise as I can during the day. I am looking forward to moving soon, as it will give me the opportunity to be more active around the house, as we will be packing, unpacking, decorating, and sorting the garden, most of which I will do whilst Joe is at work. Hopefully, this will help me to lose weight and sleep better too, fingers crossed.

For now, I would love to get back into writing on this blog, as I realised today just how much I have missed it. Keep an eye out over the next few weeks for some more posts, as I will definitely be writing again now I have written this.

Let me know if you have any questions or advice, I’m always open to comments and love to hear feedback!

Bye for now 🙂

 

What is ‘pacing’ and how can it help my fibro?

Help for sufferers, Posts, Work

Plenty of people with chronic illnesses like to talk about pacing, but if you’re newly diagnosed or have only recently started looking for advice, then you might not know what this is.

Pacing is a method of coping with the fatigue-like symptoms often associated with chronic conditions such as fibro. It involves creating a broken down or spread out routine, so that tasks can be separated into smaller, more manageable chunks. This ensures that you can concentrate longer on tasks by giving yourself small rest breaks in between.

For example, I like to split up my daily chores, study sessions, and various errands by having at least five to ten minutes of nothing for every hour or so. After a while, I have a larger break, and if I’m struggling, I will increase the frequency of my breaks. If you don’t like to sit and do nothing, try doing something easy that takes little energy (mental, physical, or otherwise) and is a distraction from your task.

(N.B: From here on it gets complicated, so you might want to skip the next paragraph if you dont fancy the heavy reading!)

The next question is this; how do you figure out your rest to work ratio? Well first of all, you need to spend some time figuring out how long you can go before you lose the will to live. This is how long you can go before you need a big break. Then, try and count how many times within this you get distracted; this is how many mini breaks you need. Spread them evenly within the time frame, and aim for between five and fifteen minutes for each break. you can alter this to your taste later, if necessary.

If all of this sounds too complicated, just remember to aim for 3:9:10 (for every 3 hours, have 9 equally spaced lots of 10 minute breaks, so every 20 minutes have a break). Or, have a 10 minute break every so often if you can’t keep count. Don’t forget as well that you can mix up the same ratio for smaller or larger amounts of time, and for every 3 hours, have at least half an hour or more to recuperate.

Most importantly, though, is to remember that you aren’t aiming to get loooaaaddss done, but to work at an efficient pace that keeps you healthy and happy. If you can’t do as much as you thought, that’s okay. Just stop for the day and adjust accordingly tomorrow.

If you like my pacing method or think you have something to input, please help us all out and let us know in the comments.

Thanks for reading!

Beat back the fog in five simple steps

fibro fog, Help for sufferers, Posts

Having fibromyalgia has many a downside, but one of the most irritating (and most overlooked) issues of the condition is fibro fog. From losing your glasses (check the top of your head) to forgetting an important appointment, the fog ruins us all at some point. Here are five simple steps to get the worst of it under control…

1. Establish a routine.

If you set a daily routine, it helps to keep track of those pesky things that love to disappear, such as your glasses and keys. I like to leave my keys in the same place each day so that I know that they will definitely be there when I need them. Likewise, checking for That Important Thing every time you do a certain task can help to set up a routine.

2. Set reminders on your phone.

I ALWAYS forget to take my meds, as in, I forget my meds every. single. day. To combat this, I have two reminders set on my phone, one at my usual wake up time, and one a few hours later, just in case. Honestly, it’s the best thing I’ve ever done, and it’s prevented countless numbers of flares.

3. Invest in a diary, journal, or planner.

Planners are useful for getting down those daily events that often slip your mind, and getting a little pocket diary means that you can take it everywhere for when you need it the most. Appointments, anniversaries, contacts, and to do lists can all be jotted down, and you can even take note of any important symptoms or fibro issues that you think are important. This way, you have an ‘external hard drive’ for your brain.

4. Load up on post it notes.

If there’s something you know you will forget, there’s nothing better than a huge glowing sign to remind you. Although not quite huge or glowing, an easy trick to help you to remember something is to leave your future self a post it. They have the added benefit of being colourful, sticky, and small enough to take with you, so you can use them anywhere and anytime. Write down a quick message and stick it where you’re sure to see it (mirrors, doors, the kettle, your fave snack).

5. Learn to ‘pace’.

Pacing is a technique often used by people with chronic illnesses which allows them to function for longer. Although it primarily helps with fatigue, it is also good for curbing mental exhaustion and cloudiness. Set out daily goals with steps towards each one, but make sure that they are small and achievable with breaks in between. Remember, set yourself a limit and do not exceed it. This way, you are less likely to spur on any foggy moments that would usually be caused by tiredness.

Have you got any of your own ideas? Let us know in the comments and don’t forget to like the post so I can see that I’m not just talking to myself *awkward laughter*.

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.