Good morning everybody I am officially coming
off amitriptyline, right now, as we speak [groan]
[upbeat intro music]
Let’s got back
in time to my 3rd year in University where
I was just in pain all of the time. This was
back when I was misdiagnosed with fibromyalgia.
If you want to know more about that, you can
find my very long rant about dismissive doctors
in the card above up there. I was in pain
all of the time. I was pretty much using my
wheelchair all of the time, every time I left
the house, it came with me. The pain that
really bothered me was the stuff from the
waist up because there was not really that
much I could do about it. So my rib pain was
horrendous. My rib pain was by far the most
painful, most… was it debili- I don’t
know if I would call it debilitating but it
was just there all of the time. Every single
time I took a breath it hurt. Breathing in
hurt, breathing out hurt, sneezing- oh my
god don’t even get me started on sneezing,
coughing nope. Not my favourite, so that was
the pain we were trying to control and they
decided that that was probably nerve related
so they put me on amitriptyline. I’m not
gonna go into the pharmacology of amitriptyline
because to be honest, neuroscience really
isn’t my area of expertise and I’m not
going to pretend I understand it and I definitely
don’t understand it enough to teach it somebody
else. Amitriptyline is an antidepressant which
in low doses around 10-25mg can be used to
treat nerve pain and chronic pain and just
help you sleep through your pain better. Let’s
just jump right into starting it shall we?
Um, it made me feel like dog shit when I first
started it. I was a zombie. So my partner
at the time was staying with me and the first
night on 10mg of amitriptyline- it’s a tiny
little blue pill, how much chaos can that
little pill cause? A lot. It can cause a lot.
Um, I was asleep pretty quickly, and then
in the morning my alarm clock went off, and
apparently- I don’t remember this at all,
but apparently, I woke up, growled, said “absolutely
not”, and went back to sleep. Um, and then
I woke up at something like 2 o’clock in
the afternoon. But that was relatively normal.
If you speak to anybody that started on amitriptyline
that didn’t have, you know, really bad side
effects, that is generally normal because
the way it works is it does knock you out
a bit. My first night on that my body was
adjusting to it and I slept a lot. And I think
that was in part because I had not been sleeping
well, it’s hard to sleep when it hurts to
breathe. You take it in the evening, I took
it around 8-9 o’clock and then it was fine.
I stopped being so much of a zombie, I could
actually wake up to my alarm clock and it
was good. I think it was like day 3 or day
4, I woke up and I sat up and I took a breath
in and it didn’t hurt. And I remember being
really emotional because that was like the
most freeing thing. It really worked wonders.
It turned me into a little bit of a zombie,
I had to do some math, so I found the best
way to be able to wake up when you’re on
amitriptyline is to take the medication 12
hours before you- at least 12 hours before
you need to be awake. So I generally needed
to be awake at about 8 o’clock, so I took
my medication at 8, and I kept taking my medication
at 8 even when I didn’t have to get up at
8 anymore because it was just routine and
it was a nice sort of time to take it and
it ensured that I wouldn’t sleep through
until 2 o’clock in the afternoon. So in
the early days generally it was great for
my pain, I had very few side effects. Then
the pain started to creep back a little bit
so I went back to my doctor and she said “ok
you’re on the 10mg dose this is quite common,
take 25 mg” so I did, and taking the 25mg
was absolutely fine, I was a little bit of
a zombie again for about the first week, while
my body adjusted to it, but I kept everything
the same and then it just sort of evened itself
out and I was not pain free, but the pain
in my ribs was pretty much gone and it really
helped me sleep and keep my pain sort of bearable.
Long term side effects I guess. I did have
to make some sacrifices to be able to take
amitriptyline- and that [sigh] sacrifices
makes it sound really bad, but it really didn’t
mix well with alcohol. I was already sober
at this point but on the occasion that I fancied
just a little bit- so like a glass of wine
at Christmas or a little drink at my friend’s
wedding, it made me feel so nauseous and-
we’ve spoken about it before, me and nausea
are not friends, and like nausea causes anxiety,
anxiety causes nausea. Bad. Bad bad bad. So
I was unable to drink at all which you know
is fine, but if you really enjoy going out
and having a drink, if that is one of your
social hobbies, it’s something to be aware
of. While I was on amitriptyline my brain
fog was pretty bad, but I’ve always had
brain fog pretty bad, um, it- I think it made
it a bit worse, like on the days when my brain
fog was bad, it was so much worse. It’s
hard to really know which thing was causing
my brain for- whether it was the amitriptyline
or whether it was the chronic illnesses or
the fatigue or just the being in pain all
the time, Generally it was OK. Fast forward
to a couple of months ago and I was reading
some of the long term side effects because
when you start a medication you generally
read the side effects that you’re likely
to experience when you start the drug and
then you now, it will even itself out and
you’ll be ok if you stick with it… Uh…
You don’t generally read the long term side
effects but- and also when you have brain
fog and some issues with memory, they don’t
always stay on your head. So reading it I
found that amitriptyline long term can uh
increase brain fog which I didn’t want,
and it can cause these things called hypnopompic
hallucinations, or hypno- what’s the other
one? There’s 2 types of sleep related hallucinations,
one is when you’re about to drift off to
sleep and the other is when you wake up, and
I was starting to have the unfortunate hallucination
of spiders. I don’t like spiders. Uh, nobody
likes hallucinating, nobody likes hallucinating
spiders. It was just not really my favourite
but I just- I don’t know what I pegged it
down to, but it turns out amitriptyline can
cause those and… I wanted to very much not
have those any more. And so because of the
side effects and some reasons you’re gonna
hear in a minute, I decided I would like to
come off amitriptyline and just see what happened.
So let’s just go to past-me for a minute.
Good morning everybody, I am officially coming
off amitriptyline, right now, as we speak.
[groans] throughout my life with pain, I have
never really had the opportunity to just sit
and be in pain and to just work on coping
with pain. Largely because I got ill when
I was very young- I say very young, I got
ill when I was young, I was in school, I couldn’t
just take the time to sit and be in pain and
to take the time to like work on just this
is my life now, it was always like “oh you’ve
got GCSEs, oh you’ve got A-levels, you’ve
got to go to school every day, you’ve got
to revise, you’ve got to do these things”
then it was uni, very much the same, and then
my masters, very much the same. But now I’m
finding it hard to find a job, not going to
lie, and also we’re in lockdown right now.
So what better time to sit and learn how to
cope with being in pain, or to just get used
to it and not have to worry about doing everything
else and overcoming pain, I can just sit and
exist. And also I’ve been on amitriptyline
for so long that I’m not sure what my actual
base pain levels are, so today is day 3 with
no amitriptyline whatsoever. Experiences so
far, I’ve been quite tired because amitriptyline
helps you sleep and if you come off amitriptyline
you will struggle to sleep for the first couple
of days and that is, that is where I’ve
been. Pain is obviously higher because I’m
not on a pain killer, but I can’t tell whether
this level of pain is my base level of pain
or whether it’s just “withdrawal”. So
coming off such a low dose of amitriptyline
I’m not really gonna have a withdrawal syndrome
kind of effect but I will- my body will notice
it not being there. But so far, so good. I
don’t feel horrendous, I don’t feel brilliant
but I don’t feel horrendous. I’ve had
a couple of headaches but dealt with that,
sciatic nerve pain sort of, shooting pains
down my legs, horrible, Growing pain type
things in my legs, not my favourite, not brilliant,
but getting there. I slept ok last night,
well I slept last night. That’s, we’ll
go with that. So. So far so good. See you
in the next time I pick up the camera to talk
about this I guess. Bye. I’ve been off amitriptyline
for a couple of months um, unbeknownst to
me it was treating some vertigo that I didn’t
know I had which was fun, but generally I’ve
had a little bit of improvement in my brain
fog. I can now enjoy a drink socially, which
is nice, I [laugh] I haven’t hallucinated
spiders in a very long time which is honestly
really nice. If you’ve watched my cardiac
memo results you will have heard a mention
of a thing called long QT syndrome. There
was no evidence of that in my ECG, which is
absolutely fantastic and I’m very happy
about that but I do have a family history
of it, and doing some research, it turns out
that amitriptyline can cause or worsen or
trigger long QT syndrome in people who are
prone to get it. So even though there was
no evidence of it, it’s really nice to just
not be on a drug that could possibly trigger
it. Do I feel better for coming off of amitriptyline?
Yes. How is my pain you may ask? It’s a
mixed bag. It’s no longer like completely
controlled and on the same level as it was,
but it’s nowhere near as bad as it was when
I started amitriptyline so I don’t think
I need to be on it any more to control the
levels of pain that I’m in. My ribs haven’t
hurt since, which is really good. It’s really
nice that that pain has gone away. I don’t
know what caused it, nobody will really say
because nobody really cared to look into it,
they blamed it on fibro that I didn’t have…
which is now really interesting to find out
what was causing it but meh. Amitriptyline
got me through what I needed to get through.
It got me through university twice, it got
me back doing sports, because I am actually
quite a sporty person as it turns out, and
all of my friends from back home would never
say that about me, but it turns out I like
sport and I like being active so it enabled
me to play wheelchair basketball while I was
in university, it enabled me to coach, that
was fun. It enabled me to not just live in
a pit of pain. Coming off of it has allowed
me to as I’ve said, just sit and learn what
my pain levels are and how to deal with them
when I don’t have to focus on anything else.
I think that going to university with chronic
pain contributed to how bad my pain actually
as because I was stressing about pain and
pain getting in the way so I was stressed.
And stress can aggravate chronic pain as we
all know. So now I don’t have that, I can
sit and be in pain and it’s completely fine.
Any down sides to coming off of it? No really.
Do I recommend anybody tries it? If you are
offered it by a doctor, try it. Give it a
go. Because I know my experience isn’t universal,
but the positive impact it made on my life
makes me want to just suggest that you try
it if that’s what your doctors are suggesting.
If it doesn’t work well there can be other
medications, um, but overall it’s definitely
worth a go just in case it can have the same
benefit for you that it did you me . So yeah
that’s my experience with amitriptyline,
I hope that it’s been helpful. Sorry it’s
just another sit down and talk of me just
saying “this is what happened”. I started
it before I started a YouTube channel so I
couldn’t really do the interactive thing
that I usually do when I start medication
and because I mentioned it in a video already
I just wanted to talk about it and the fact
that I’m not taking it anymore. Let me know
how you got on with amitriptyline down in
the comments section below or if you have
any other questions that I have not answered,
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And that’s all for now folks. See ya!
