Monday, 5 December 2016

Coming Off Quetiapine: My Experience

Hi guys, I just wanted to write a post today talking about how I felt when coming off of the drug Quetiapine (I take the mr version. You may know it as Seroquel, Sondate or Biquelle XL?).
Baring in mind that I have only been taking this drug since August (I think..August? is that right?).
The longer you take the drug, the harder the withdrawal is.

Lets start by saying, it has been rough.
I have spent the majority of my days feeling absolutely terrible.
I have been compiling this blog post for the last month to give you a picture of what 30 days Quetiapine withdrawal looks and feels like.

*A bit of back story*
For those of you that don't know, I was initially prescribed Quetiapine a while back and it worked. It really did so though the side effects were rough, the benefits far outweighed the side effects. I just got on with it. It made me feel more confident. It helped to cap my moods. By that I mean that I couldn't feel excessively happy and I didn't feel the lows as badly as I previously had. It took away my ability to cry as well. I couldn't feel that soul crushing sadness I often find myself dealing with.
And then some stuff happened with a new psychiatrist -who I'm pretty sure was from HELL- and I ended up being taken off of it.
Anyway, moving forward I was put back on Quetiapine recently and unfortunately, my journey hasn't been the same, It hasn't worked for me this time. I stuck with it for about 3 months but I found it had 0 effect on my moods or my depression. I felt like shit the majority of the time and that was only worsened by the shitty side effects.

So I decided to take myself off of it.
I haven't yet discussed this with my psychiatrist as my next appointment is late December but as I keep reminding myself, this is my body and my choice. I have to do what's right for me and taking this medication isn't.
I did it as gradually as I could with the tablets I had left. I went from 300mg down to 250, then to 200. I took that for a week then went to 100 which I took for 3 days. Finally I took 50mg for 3 days and then nothing.

Initially, I struggled with a really strange feeling. It started when I started dropping the dose but particularly when I went from 50mg down to nothing.
So define 'strange feeling'.
My whole body would suddenly feel cold all over but especially around my hands, feet and chest area. It was a coldness that I couldn't get rid of. If you've ever fainted and experienced that horrible cold, tunnel vision feeling just before you do, it's a similar feeling.
I would have to sit myself down and just take some deep breaths. I would then be greeted by waves of nausea. I mean, really bad. I had to constantly talk to myself and say that this is the withdrawal and this is okay but it felt anything but. This feeling terrifies me every time it happens but I know that I will get through it. You have to just grin and bear it (pfft...100% without the grin).
These moments happened for about an hour and occurred about 3/4 times a day.
For me, this was the worst side effect because it could happen at any time, any moment and I had 0 control. It scared me a lot.


Day 1

Nausea. I have found myself feeling so sick...a lot. I'd be fine and then suddenly a certain smell or taste would be a trigger and I would just get waves of extreme nausea. There was a whole lot of empty retching and that horrible watery mouth you get before you're about to throw up. I struggled to brush my teeth...I couldn't even put my toothbrush in my mouth without gagging. I had to psych myself up... it wasn't pleasant.

Day 2

Nausea. Severe nausea in fact. I struggled being out of the house because there was too much stimulation. I felt so ill.
Insomnia. Again, severe. I got about an hour of broken sleep from about 5am to 6am. I could not switch the brain off. My body was restless and I needed sleep but no such luck. I was wide awake.

Day 3

Nausea. This is a real struggle. I can't be outside for too long because of the intense and unpredicable waves. The anxiety isn't helping either. This isn't the regular anxiety I experience, this is a fear of being sick in public. As soon as I feel those waves, I get a tightness in my stomach and I am instantly on edge with worry I might be sick. I am terrified I'll need to vomit and people will see... god, just no.

Insomnia. Very severe. For the second night running I haven't been able to sleep for any length of time. I managed about 3 hours so better than yesterday.

Itching. Oh here it comes. The one I've read so much about! I don't even realise I'm scratching until I look down and my leg is red raw and covered in those blood spots.

Body Aches. I think this has come from the lack of sleep. My whole body is sore and it generally hurts to move. I spend most of the day laying down resting (but unable to sleep).

Day 4

Insomnia. A lot milder and I managed some sleep even if it was on the sofa. Once I fell asleep I realised how desperate I was for it. I spent most of the day unable to move, wrapped in my duvet on the sofa.

Aches. My whole body is tense, sore and keeps seizing up and feeling crampy.

Nausea. Still there. It lessened today but came on heavily when I ate meals. But today, I could cope with it.

Itchy legs. So freaking itchy!

Dry, itchy scalp. My head has suddenly got so itchy and dry. It feels so rough and sore.

I'm also experiencing cold symptoms. I rarely get colds so this is frustrating. I may have picked one up when I was run down.

Day 5

Nausea. Oh hello my old friend. A constant theme this week. Significantly worse when I eat and at night time.

Itchy legs. So effing itchy. My legs are covered in marks from itching them without realising. I cannot help it. I do it without a second thought. So obviously my skin is getting sore from it.

Day 6

Nausea. Still experiencing very significant waves of nausea. I have started taking antacids after my big meals to assist with digestion. I eat and feel like I may vomit any second. As I type this I actually feel very, very sick.

Itchy legs, head, chest...everywhere! If you would please excuse me while I go and cry in the corner (and tear off all my skin)

Headache. I have had a lingering but not terrible headache all day. I think it may be to do with my eyes and how tired they are. I feel like no amount of sleep is enough.

Day 7

Insomnia. I didn't get much sleep. I fell asleep at about half 3 and was up by about 6.

Itchy..SO ITCHY! I'm really struggling with this one. I hate it so much and it's so painful.

Day 8 onward

As the symptoms have been very similar from day 8 onward I decided to just list them here.

Itching. This is one I experience on and off (even now). It can flare up at random moments and it's usually on the thighs, inner elbow area, chest (around the collarbones and across to the shoulders) or the neck. It has calmed down a lot though and apart from the sudden itchy bursts, I do get some relief.

Insomnia. Again, it comes and goes but I'm used to that. On nights when it's really bad I hardly get any sleep. I just lay in bed getting increasingly uncomfortable and restless and very frustrated.

Muscle aches. I think this might link in with the insomnia. Something always hurts. If it isn't my shoulders and neck area, it's my legs that start to feel crampy and sore. I have been struggling with back and neck aches. Not nice.

Nausea. This one for me is the one I absolutely hate. I am still experiencing waves of nausea that hit at the worst times. Then I get the anxiety that comes and sits alongside it like they're old pals.
I hate feeling sick and it does stop me doing things. I don't enjoy eating out anymore, I don't like going anywhere that doesn't have a toilet in case I need to be sick, I panic a lot more because of it... The nausea triggers anxiety which triggers more nausea and that tense stomach feeling which makes me panic. Nasty vicious circle that I haven't found a way to break just yet.

Dizziness. I have noticed that I find myself a bit wobbly on my feet sometimes. When I stand up I get dizzy and sometimes have to grab something to steady myself. I can also get random spells of dizziness. I find this is exacerbated because of the lack of sleep and aching muscles.

Dry/tired eyes. Even though I keep drinking plenty of water, take my antihistamines every day I have really been suffering with dry itchy eyes. They also feel like they ache too. They just feel tired and sore which doesn't help when you're trying to get out of bed... some days I just can't keep my eyes open because they hurt. Again, probably exacerbated by the insomnia.


Despite all of these side effects and feeling physically rubbish, emotionally and mentally I have felt better. I have seen a drastic improvement in my ability to cope with things and to make rational decisions. I have seen an increase in my reasoning and by that I mean that when I get worked up, flustered or overly anxious I can talk myself down and on quetiapine, I felt like I'd lost my ability to do that. I have seen a lot less emotional outbursts too.
I don't know if this is possible but I suspect that quetiapine may have been making me experience depression symptoms every day. I felt like there was no relief from the intrusive thoughts or anxious moments. I felt on edge and on the verge of tears every single day. It was only when I came off of them that I realised that I was actually having frequent suicidal thoughts. It was with these thoughts that I decided I needed to come off of these immediately. I genuinely don't know what my mental state would be if I continued with this medication so in the long run, I think I made the right choice coming off of them.

I am not advocating taking yourself off of medication in any which way but what I am saying is that if you feel that a certain tablet is making you feel less than your best and you know that the side effects you're experiencing are causing your mind or body to experience significant stress or trauma, speak to your health care providers! Speak up!
It is your body and you don't have to spend your whole life on a medication that doesn't work.
You know your body more than anyone so if it doesn't feel right, mention it. Persist and get what is right for you.

Another nugget of advice is that if you are going to come off of quetiapine and you work, take time off. You will 100% need it!
You feel like you can barely function so give yourself time.

I hope this helps anyone else going through withdrawal.
You do get through it and it does get better.

Lots of Love
Loubee
xx




2 comments:

  1. I know this is an old post, but I found it very helpful. I take a medication called Tramadol, and the withdrawal process sounds very similar. It's hard to find blogs that are willing to stalk about the stigma of medication, so I'm very grateful for your thoughts- it is a big help.

    Arielle

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    1. Your comment really means a lot to me. It can be really hard to open up but once you do, you realise that so many other people are in the same situation and value your honesty and experiences.

      I'm glad this post was helpful x

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