When Equipment Takes Over

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My Duloxetine Journey

I am just looking at the side effects for one of the anxiety meds I am currently weaning myself off.

• Sleepiness/Fatigue
• Nausea
• Diarrhea
• Difficulty urinating
• Dizziness
• Drowsiness
• Headache
• Dizziness
• Dry Mouth
• Constipation
• Heartburn
• Increased urination
• Muscle pain or cramps
• Night sweats
• Stomach pain
• Uncontrollable shaking of a part of the body
• Vomiting
• Weakness
• Nausea
• Changes in sexual desire or ability
• Increased sweating

Of these side effects I have experienced a whopping 17. Not just mildly either.

I finally got fed up of the side effects and weaned myself off. I know I know. You are not meant to just stop… so I started by halving my dose, then halving again. I know I should go to the GP and so on and I would never advise anyone do what I’ve done. But I was desperate, fed up, and literally could not get to a GP in time.

The drug I am talking about here is duloxetine/fluoxetine. When first told about this drug I was almost excited… excited to get better, excited that this is a relatively new one (I think? Sort of?), it boasted a lot more positives than my previous two which were citalopram and sertraline. I knew it was also used to treat people with chronic pain conditions such as fibromyalgia. This isn’t an illness I have though I have a lot of the symptoms and thought oh wow, this might actually work! (Not undermining the very real struggle people with fibro have by the way)

Within moments of taking my first 20mg dose I was immediately VERY nauseous. I had this with my previous two drugs so wasn’t entirely surprised. My mouth would continually oversalivate, I’d retch, get dizzy, and need to urgently get outside into fresh air. I would feverishly sip cold water and hope desperately for the feeling to pass.

After about a week this subsided but I was still entirely a zombie. I was so tired. My limbs felt weighted, my eyelids giving up, my head swimming. I fought through the feeling hoping that like the nausea it would pass.

One thing I did enjoy was that I no longer cried. My chest didn’t feel as tight. I felt more like I could breathe and that my heart was beating at a normal pace. But oh boy was I hot. I was literally hot to touch. Sweating, overheating etc. It was horrendous. This never subsided.

I returned to my GP after I had let my stress levels become too much. Unexpectedly I bawlecd my eyes out to the doctor. I rambled and rambled for about 10 minutes until I was entirely drained. I sunk back into the chair and the GP recommended increasing my dose.

I went from 20mg to 60mg. I accepted this in my determination to feel better and went away to take my new dose.

She said to let 3 weeks or so pass and see how I feel. If I was still struggling I was recommended venloaxine or mirtrazopine. I’d heard of the first one and thought ooh maybe that’s the one for me, but we shall see.

It transpired that no, I hate duloxetine. We don’t agree with each other at all.

I returned to the GP once again. I was going to list all of the bad side effects. The jaw clencing, the cheek chewing, the lip picking, the night sweats, hugely increased apetite and weight gain, the nightmares, the feeling disconnected/drunk/floaty, my inability to hold a lucid conversation and so on.

It was a junior doctor on his own for the first time. I think he was a lot younger than me. He had that friendly optimism that I find all of the newer doctors have. He welcomed me into the room, smiled, and informed me that he’d had a good read of my file. I love when they read up on your background… less repeating myself. Also they know I’m a carer and have a lot going on.

He deliberated for some time on the best course of action. I didn’t care, I just wanted out of this silly drug.

He went away to discuss with a more experienced doctor.

When he returned he said “You know, actually, you aren’t on the full dose of this, we can put you on 120mg”

My heart sank. I could see that they wanted me to try this before exploring any other medication. I said to him “but the reason I came is the bad side effects.. will this not make it even worse?” The look of realisation hit him.. I think he had forgotten that my main reason was that I hate drug. “It shouldn’t make it worse as such..maybe just see how you get on”

Let’s just remember for a second though… I don’t go to the doctors for myself unless I absolutely have to. Usually whatever the issue is has been bubbling away for a while and I’m been frantically trying to fix it myself from home. Amy is in and out of hospital a bit and has a lot of medical themed appointments and needs… even getting to an appointment is not easy for me. This time my mum had cared for Amy for me so I could go. I also know that these drugs are not easy to come off. The withdrawal effects are brutal for some and weaning off it to start a new drug causes me anxiety just thinking about it.

So I was taking two 60mg tablets a day. I felt so spaced out. The jaw clenching and insomnia got worse and worse and worse. I’d be physically and emotionally exhausted and just lay in bed with restless legs and thoughts on a constant running tap until about 2am. Every sound making me jolt with surprise.

Hence my now weaning off it.

I got a diagnosis of PTSD earlier in the year… it’s a very real thing. I used to think only people who had been at war had this condition, but no, it can affect anyone. The flashbacks, the nightmares, the nightsweats, the sudden overwhelming panic when an unexpected trigger appears. It can cause your legs to turn to figurative jelly and fall to your knees. It can send your heart rate through the roof. It can make the pit of your stomach feel like it has dropped into the depths of hell. Your fists clench, your jaw locks shut, tears form, you feel dizzy and sick. I get tearful even just typing about it. I feel sort of fraudulent in this diagnosis as people out there who have been through worse. But it’s all relative and I really need to learn to be kinder to myself. I have been through some shit and there is no denying that.

I feel that I do need the meds. Suppressing those excess emotions (in a healthy way! you know so I’m not a crying wreck at every mishap) to give me a small bit of calm and clarity is so important. But I’ve tried 3 meds now. All with such revolting side effects. I don’t want to work through the list continually making myself ill, iller, ill, then off the meds. I feel so sorry for my other half who has to deal with me. I feel a lot of guilt and really a lot of self loathing. I have gained so much weight, I feel so unattractive. Even my own name annoys me at the moment. I wish I could just get out of my own head for a day.

So I am currently about 4 days cymbalta free. I am frenzied.

Tomorrow Amy starts school for the first time. She is going to a special needs school.  I still don’t know what time transport come tomorrow and if it will all be okay. She can’t speak so I won’t know how her day was and how she is feeling. I’ve been her full time mum and carer now for over 4 years… her leaving for school feels like my purpose is being taken away. Being a carer can already strip you a bit of your self worth and identity.. it is very very low paid (30p an hour ha). My self esteem has taken a real bashing and I’m always so tired. I can’t look for a job as would need to be off in school holidays… also she has an upcoming surgery… also seizures and chest infections can hospitalise you at any time. It’s all very uncertain and planning anything at all can set you up for a fail from the beginning. I plan to have a huge house sort out, long dog walk everyday, ebay a load of things we don’t want or need to get some extra space and money, geocache, rock paint and so on. I will do whatever I can to try and get back some self worth and confidence. And I will lose weight.

Since having amy I have gained almost 6 stone. My clothes fit horribly, I hate all pictures of myself. I can’t take even one nice selfie anymore. This will change. But I need to be kind to myself and not expect instant results.

We are waiting in for a wheelchair repair at the moment. Also my new phone. I really need to go out and pick up her prescription, and go to the shop for a present for someone. but I am trapped home. It’s a really agitating feeling.

My main anxiety feature is not being able to stop. Things like feed changes, drawing meds, washing, etc. I burnout easily but can’t sit still. If I do I feel panicked and guilty and lazy. I feel like everyone around me will judge me and abandon me. I feel like I want to even abandon myself. It’s shitty.

I have a therapy session later in the week. I need it so badly. I also need to go to the GP again.

I want to be meds free. But I’m not sure I can do that. I need to cut caffeine, exercise to drive down adrenaline levels, eat better, drink more water. Not work as hard at things that don’t matter. Nurture the few friendships I have left. Stop caring what people think. Get on top of my eczema. Sort out my awful sleeping habits. Read more. Write more. Be less paranoid. Breathe better. Write more blogs. Write more blogs for firefly. Get a bit more organised and change my priorities.

Something that happened recently is really niggling at me and I am trying to forget it. There is nothing I can do about it. I think I just need to talk it out at therapy.

This post didn’t have a huge point, I think I just needed to purge and let it out there.

Good news is… the equipment guy just came and took Amy’s standing frame away for school. He turned up out of the blue and I’m a bit upset that I didn’t get time to clean it… but at least I didn’t need to clock watch and wait in like I am for other things right now.

And finally. In my bid to get better I bought these two books. Started reading the Sarah Wilson one two days ago and am on page 100 already. This is in itself is a huge achievement as I dropped out of all of my hobbies a while ago and I used to read a book a week!