Xtine: Suffering Akathisia from Amitriptyline taper, other drug complications

[Xtine]

I'm in a really dangerous situation, suffering akathisia that is off the chart at times.  Some waves I get are horrendous with suicidal thoughts and these are bad but yesterday I had a wave where I had physical impulses that were near on impossible to stop, it lasted 2 hours, I don't know how I stopped myself from acting and nearly called the emergency services.  I have a complicated story and lots of drugs in the mix but the main problem happened while tapering amitriptyline and participating in a cocaine binge.  I did not know what I was doing, very naive and stupid, I know that now. 

 

Anyway, I was tapering Amitriptyline and was relatively stable, some agitation first thing in the morning which was irritating, I should have not rocked the boat but it's done now.  I had a couple of nights where I took quite a lot of cocaine and smoked some crack, makes me feel sick thinking about it. I've never done it before and it was facilitated by someone who I now realise was dangerous to be around.  On the second night I started having breathing difficulties and agitation in my body and some unbearable rushing feelings and insomnia. I continued taking my Amitriptyline at the dose that I had been on for 4 months and had been mostly stable on.  Lots of investigations by the doctors showed nothing significantly wrong though I do have mild emphysema but doctors saying that my breathing symptoms were not a consequence of that as some of the sensations I had are not emphysema related. 

 

I had a spasming feeling in my diaphragm, feels like its in my chest rather than my abdomen where it should be and it has been continually difficult to take a full breath, though there is nothing wrong with my blood oxygen levels.  I also developed inability to sleep more than 4-5 hours always waking up with rushing and agitation in my body and all day agitation continued through out the day. I struggled on. 

 

On Christmas Day I finally flipped out, unable to contain my distress and shook my whole body really hard in frustration, I think I had some kind of adrenaline surge and then things got a whole lot worse. I still continued to take my usual dose of Amitriptyline.  However, I then developed bladder pain and urine retention and couldn't pee, nerve pain in my hips and shoulders, total insomnia, really bad agtitation (which I later discovered was akathisia), head pressure, gripping sensation in my neck. 

 

I realised that after taking medication either the Amitriptyline or my inhalers that the rushing in my body got worse.  I called the doctor and he told me to stop taking the Amitriptyline 20mgs, which I did on 2nd Jan 2022.  Since then my bladder pain eased, not gone but better but most other things got worse. 

 

My symptoms are horrendous but there were also horrendous before I stopped taking the Amitriptyline.  Now my situation is every time I put anything in my body I go into full blown akathisia episodes. This includes any food or anything other than water.  I don't know what's happened to me but my system can't handle anything anymore.  When I eat anything I start to feel my bladder tighten up (n I can pee now but still get pain), a cool rushing sensation in my chest, my heart starts to pound, I get head and neck pressure like a gripping sensation, blurry vision, dizziness, nausea, I only sleep for 2 hours a night then I 'm up with agitation that slowly builds, I'm pacing, rocking, writhing, suicidal thoughts that yesterday after eating something tipped over into physical impulses that were very hard to control, burning skin on my legs and arms, increased breathing rate and shallowness of breaths, diaphragm spasms that are sometimes relieved a bit by stretching, a weird inability to produce tears (I'm crying all the time but tears seem to have stopped being produced, is this some kind of cholinergic effect/rebound). 

 

There's probably some symptoms I 've missed and I don't know what I'm asking here.  I don't think anybody can help me. I'm not sure that reinstating would given that I was having symptoms before stopping the drug.  Even if I manage to get through the intense impulse to harm myself I still can't eat or take my inhalers as I need to, I feel trapped and isolated and alone (though I am gratefully receiving support from some facebook group members).  I can't see a way out for me because everything I put in my body reacts badly. It seems hopeless and I'm terrified of the next wave of akathisia that has me physically unable to not act on the impulses that consume me. I don't think there is any hope for me because I can't eat either.  I've tried to be as thorough as I can with what happened but, yes there's a lot of crap in the mix and I can't believe that a mixture of my own stupidity and pharmaceuticals have got me to this point.  I'm looking for any help whatsoever, right now I don't see how I'm ever going to be well again, ever.

 

Drug History

Prozac 20mg from 1995 10 years, switched to Effexor 2005-2007 75mg, then 150mg 2007-2012, then 225mg 2012-2015, then 150mg 2015-2017, tapered over one year and came off in 2019 and was fine, no withdrawal

Gabapentin 1200mgs 2014-2015, 2400mgs 2015-2016, 1200mgs 2016-2019, 800mgs 2019-2020 tapered off 2020 some neuropathy, hair loss

Amitriptyline titrated up to a dose of 100mgs 2018, came down to 80mgs 2019, down to 50mgs 2020 and was stable. Tapered down over 8 months in 2021 to 20mgs which I was stable on but some agitation in the mornings.

Edited February 12, 2022 by Altostrata
added paragraph breaks

[Xtine]

Total Food Intolerance

 

I really need help. I cannot eat anything. The only thing I don't get a reaction to is water.  This happened gradually over a few weeks where I thought I was having reactions to certain foods so I cut everything and started from scratch and kept a food diary. That seemed ok for a few days then 2 days ago I started reacting to everything I put in my body apart from water.  2 days ago I ate a few bites of salmon and had a reaction, head and neck pressure, dizziness, blurred vision. Then waited for the effects to subside and tried a bite of banana, same thing so waited, then tried some peanut butter, same thing.  I stopped eating that day and symptoms reduced.  Then yesterday I tried a few sips of pineapple juice, 1 grape and 1 slice of zuchinni and they all produced such a violent reaction I 'm not sure how I'm still here.  I can't go through that again because it was near on impossible to stop the physical urge to hurt myself, these were not just thoughts but a serious compulsion driven from inside me, extreme akathisia.  Now I don't know what to do.  I can't eat, my stomach is burning, my BMI is already too low, I'm getting boney.  I don't think there is any hope for me.  I also have emphysema and can't use my inhalers or any medicine of any kind.  Everything I put in my body creates a reaction so bad that I don't know how to survive this.  I'm scared and yesterday I nearly called an ambulance, which I know could be really bad for me because there is no treatment for akathisia.  I've tapered 3 meds in 3 years, and (stupidly) participated in recreational drug use, doctor ct'd me off the last of my Amitriptyline 6 weeks ago (20mgs).

 

Drug History

Prozac 20mg from 1995 10 years, switched to Effexor 2005-2007 75mg, then 150mg 2007-2012, then 225mg 2012-2015, then 150mg 2015-2017, tapered over one year and came off in 2019 and was fine, no withdrawal

Gabapentin 1200mgs 2014-2015, 2400mgs 2015-2016, 1200mgs 2016-2019, 800mgs 2019-2020 tapered off 2020 some neuropathy, hair loss

Amitriptyline titrated up to a dose of 100mgs 2018, came down to 80mgs 2019, down to 50mgs 2020 and was stable. Tapered down over 8 months in 2021 to 20mgs which I was stable on but some agitation in the mornings. Doctor CT’d me Jan 2022 from 20mgs

 

 

Edited February 11, 2022 by ChessieCat
added Intro topic title before merging with intro topic

[Altostrata]

Welcome, @Xtine

 

I'm sorry you're in this situation. What we have seen here is that when people go on and off psychotropic drugs -- psychiatric drugs, pain drugs. street drugs, alcohol included --  their systems often become sensitized to a lot of things.

 

In your case, it sounds like the cocaine binge may have triggered hypersensitivity to and adverse reactions from amitriptyline, which you described here:

20 hours ago, Xtine said:

However, I then developed bladder pain and urine retention and couldn't pee, nerve pain in my hips and shoulders, total insomnia, really bad agtitation (which I later discovered was akathisia), head pressure, gripping sensation in my neck. 

 

You have a long history of prescribed psychotropics, and you say (but do not detail) you have a long history of street drugs. Your entire history of going on and off drugs, overdoing drugs, etc., has brought you to this point. It's not any one thing. For that reason, I cannot guess that reinstating any amount of amitriptyline may help, even though some of your symptoms may be withdrawal symptoms from going off amitriptyline.

 

It sounds like you also may have developed food intolerances, such as Histamine intolerance I suggest you join a Facebook group specifically about this for peer support in developing a histamine intolerance diet.

 

We do not handle adverse effects of street drugs here. We advise people they cannot drink alcohol, because that tends to make symptoms arising from a destabilized nervous system ever worse. 

 

We see this destabilization tends to very slowly go away over many months, if the person doesn't upset it further with more drugs or alcohol and takes up habits enabling healing. See 

 

 

I am sorry we cannot advise you further. I wish you the best in your recovery.

[SurreyGuy]

Hi XTine,

I hope you're suffering a bit less. As mentioned in the post above, we cannot advise on street drugs (I never took any anyway). However, I can tell you what I have done since I started my amitriptyline taper: eliminate every single psychoactive substance from my diet as far as is practical. This means no more alcohol (except in minute quantities in cooked dishes), no more coffee, etc. I was never much of a drinker anyway so I do not miss alcohol. However, I do miss coffee with my croissants... 

I did experience akathisia after the doctor told me I could stop 50mg amitriptyline in one go (I unfortunately believed him). That was 2 years ago. The only thing that helped me with akathisia was walking long distance (e.g. 10 miles a day) while talking to a member of my support network over the phone. That and time... you have to give plenty of time to your central nervous system to heal...

Best of luck.

SG

[Xtine]

On 2/13/2022 at 6:11 PM, SurreyGuy said:

Hi XTine,

I hope you're suffering a bit less. As mentioned in the post above, we cannot advise on street drugs (I never took any anyway). However, I can tell you what I have done since I started my amitriptyline taper: eliminate every single psychoactive substance from my diet as far as is practical. This means no more alcohol (except in minute quantities in cooked dishes), no more coffee, etc. I was never much of a drinker anyway so I do not miss alcohol. However, I do miss coffee with my croissants... 

I did experience akathisia after the doctor told me I could stop 50mg amitriptyline in one go (I unfortunately believed him). That was 2 years ago. The only thing that helped me with akathisia was walking long distance (e.g. 10 miles a day) while talking to a member of my support network over the phone. That and time... you have to give plenty of time to your central nervous system to heal...

Best of luck.

SG

Thank you for replying. I know I'm not really a usual case and I feel sick about what I did. I don't think I really understood the risks and just went along with the idea. I have really messed up and it can't be fixed. I'm really grateful to you for sharing your situation and what happened to you. I feel a little less alone. I wish I could say its getting better but it's getting worse and I have other conditions that I can't medicate because my CNS is not having any of it. I realise now the damage I've done and it's too late. I had been completely drug, alcohol and caffeine free for a long time before this episode. I had been doing really well and then I let someone into my life that I shouldn't have, they were dangerous for me to be around. I so want to heal and get better. I prawns beg for it to stop everyday sometimes second by second. The akathisia lasts for hours and hours and the unmedicated other conditions are breaking me. One of which means I can't breathe, I praying for a miracle for the sake of my children. Grateful to you, you have helped me to feel a little better on a very very dark day🙏