SurreyGuy: amitriptyline is my poison ...

[Gertie]

I’m sorry you are dealing with this.  It possibly sounds like air hunger to me, which my daughter experienced while in her Zoloft withdrawal.  It did pass after a few weeks.

My suggestion would be to hold at your current dose for a while to see if it subsides.

As always, thank you for sharing what’s happening and where you are in your progress.  
And praying your cancer battle is going as well as possible.

[ShantyO7]

On 12/6/2020 at 10:18 AM, SurreyGuy said:

a nagging pain in the middle of my back, a pain which my doctor could not figure out. It appeared out of nowhere and was worse at night, when trying to lie down and sleep.

Did you ever find out what was causing this?

[SurreyGuy]

@ShantyO7, yes I did find out, but only after many many years! Essentially, I was put under benzodiazepine on and off during my uni years to deal with exam stress/anxiety. I never took the medication regularly and I always tried to take less than prescribed because I was told it was addictive. I thought I would not get addicted and I was really careful. Well, I did not get addicted but I certainly developed severe dependence even though I did not realised it at the time. When, a few years after uni, I stopped the benzos, I developed withdrawal symptoms (insomnia, severe back muscle pain/spasm, anxiety), but not instantly, only until a few months (6+) after I stopped so, in my mind, I never linked the 2 (symptoms and withdrawal) and neither did my GP who was completely ignorant about that stuff... 

So, long story short, my GP can't make sense of the problem and decides to put me on amitriptyline. If only I had known, I would have weathered the storm and endured the withdrawal and I would not have taken the amitriptyline... Anyway, I am where I am. All I can do now is look forward and slowly decrease amitriptyline.

And yes, the back pain (which has been with me for most of my adult life) is gradually going away as I reduce the amitriptyline...

  

[SurreyGuy]

A few more points on my previous message...

 

All of the above happened in the early noughties. At that time, the prevalent view was that you could not trust any health-related information found on the internet. Patients' views and opinions were margilanised when not dismissed outright, etc. I had no choice but to turn to my GP who was, to put it mildly, completely ignorant about psychotropic drugs. Even if I had known about survising antidepresants dot org (or an equivalent), I'm not sure I would have believed its content at the time. The crazy thing is that I never associated psychotropic drugs with back pain. I always thought of back pain as something physical, something picked up during a car crash or a sport injury... The reality is that I was myself ignorant about my own condition.

 

A lot of progress has been made with websites like this one.

 

 

[SurreyGuy]

So, the 'air hunger' at night time has gone (at least for the time being). More interesting is my tinnitus. It has become very faint over the past few days, which is such a delight considering I have been suffering from tinnitus from the ill fated day I attempted cold turkey on 3 psychiatric drugs (thanks to my GP!). Tinnitus was debilitating for the first 6 months (I could hear my tinnitus, even in loud/crowded places), then raging for the next 4 years, slowly decreasing in intensity, following the window and wave pattern. It seems that, with a bit of patience (and if I'm given time), that symptoms too will go away. Sweet!

[ShantyO7]

On 6/11/2024 at 1:54 PM, SurreyGuy said:

the 'air hunger' at night time has gone

Did you only experience this at night? I had it happen to me tonight while getting ready for bed... wondering if it has anything to do with my anxiety about bedtime?

[SurreyGuy]

@ShantyO7, I think it's at night mostly most now that you mentioned it, it may have happened a few times during the day, while trying to nap for example...

[SurreyGuy]

On 6/19/2024 at 7:51 AM, SurreyGuy said:

@ShantyO7, I think it's at night mostly most now that you mentioned it, it may have happened a few times during the day, while trying to nap for example...

I'm also not entirely sure it's always air hunger in my case. It could be a combination of air hunger and hypnic jerks. Anyway, it comes and goes. Last night was ok for me.

[SurreyGuy]

That's 2 nights in a row I sleep rather well (i.e. 8h of sleep, getting up no more than once at night, feeling refreshed in the morning). That's sweet. It probably means it will soon be time to taper againt but I just want to enjoy a bit more that feeling of being a bit more normal, living more in the now... I may wait another week before going to 2mg... 

[Mia1]

@SurreyGuy I’m so happy you’re doing well and feeling normal, YAY!! You’re really getting low and you’ll be done before you know it!! It can be so hard at times but what we learn and the ways we grow is a beautiful payoff. It’s like a master class in emotional regulation and resiliency 🙃 

[SurreyGuy]

Am in a bit of a window right now. The weather is good, don't really want to taper yet! 😋

[SurreyGuy]

A bit of an update for whomever follows this rather disjointed 😅 blog...

 

I am doing reasonably well at the moment and enjoying the summer.

 

I'm finally down to 2mg and feel like celebrating this milestone. Looking back four and half years ago (give or take a few weeks), I was on 3 psychotropic drugs, including 50mg amitriptyline. Under the guidance of my GP, I attempted a triple cold-turkey and it did not go down well. I thought I was broken and my life was over. Against the odd, I managed to cling on to my job and now, here I am at 2mg of amitriptyline, just 2mg amitriptyline!, fighting to rid myself of that drug. I know it sounds silly but I'm proud of that journey. 

 

I still have waves, I still have plenty of symptoms both physical and psychological, but, somehow, the whole thing feels more predictable, more manageable, less intense too and under that intricate layer of suffering, I can feel my body homeostasis slowly, gradually moving to a better place. It's going to take a lot of time to rid myself of that drug though, at least 2 more years, possibly more...

 

Interestingly, I seem to have developed a sensitivity to lemon juice. I can't be sure of it, but whenever I have lemon juice (for example in foods and dishes), particularly at dinner, it messes up with my ability to fall asleep and it sends my heart racing. I cannot be certain lemon juice is the culprit because I still have a fair amount of anormal variability in my body (well, anormal given the lack of variability in my environment) but I have done experiment (when it was safe for me to be sleep deprived) and it seems lemon juice and lemon juice powder do seem to trigger sleep onset insomnia and some cardiovascular symptoms...

 

Anyway, I hope you're all having a great summer.

 

Take care.

 

SurreyGuy 

 

  

 

 

[Mia1]

@SurreyGuy thanks for the update, I'm so happy to hear that things are both predictable and manageable and that you are enjoying your summer, that's a big deal and I'm happy for you!! 

[SurreyGuy]

Well, the past few days have been challenging: poor sleep and anxiety. Hopefully, those symptoms won't last too long.

[SurreyGuy]

Today is difficult. I fell asleep ok, around 9.30pm (so quite early) but woke up very early too (around 3.30am). I feel like my frontal lobe is numb. I feel stupid like I cannot concentrate, learn anything new or remember anything. I struggle to enjoy anything around me. This is hard. I can tell this is affecting my job as I am not as sharp as I used to be say 5 or 6 years ago. In particular, I really struggle to improvise during a professional conversation (for example when I need to negotiate something).

 

I sometimes wonder: am I simply ageing? was the drug making me sharper? is that 'numbskull' individual the real me? will I get better or will the damage be permanent? I know amitriptyline is associated with an increased risk of dementia and that worries me.

 

Have people recovered from their cognitive symptoms?

 

[Elodie]

Hello Surrey, I feel the same as you, stupid and I can't answer simple questions. 
A lack of logic, a loss of cognitive abilities. I took time off work. 
it will come back, it's not dementia

[SurreyGuy]

Thanks your message and your encouragement @Elodie. I hope your symptoms get better. Last Saturday was quite bad. I was better on Sunday and Monday was not too bad. I am still unable to improvise on the spot though and have been like that for quite a while. I haven't got an iota of spontaneity in me! The difficulty for me is sorting out the the 'baseline me' from the 'symptomatic me'. As you say, most of it is symptoms and, hopefully, will pass. 

[Elodie]

what do you do for a job? I am a nurse and a teacher so it's complicated

[SurreyGuy]

Without revealing too much, I work for a global consultancy where I manage a team distributed across several sites/offices. There are days I dream of winning big at the lottery and quiting to focus on my wellbeing / taper. Of course, when I am well, I love my job again and I want to do more... It's a real dilemma, which has been blighting my career/worklife since I started my taper 4.5 years ago with an ill-fated quickly-aborted cold turkey! Oh well, it is what it is... there are more important things in life.

 

I see you are based in Switzerland. At least, you can enjoy beautiful nature. One thing that has consistently helped me over the past 4.5 years is walking in nature.

[Elodie]

yes you are right, I go to the forest a lot. Being with animals helps me a lot...
for example dogs