Walking Through The Fire (Quitting Opioids)

Walking through the Fire.

Walking through the Fire.

Frank Talk On Pain and Pain Meds:

An irrational post about how opioid withdrawal makes you irrational… a rational version I’ve been trying to make coherant for days is coming. Eventually.Right now, I am really angry. Really, really, angry. At myself.

Mostly, I am angry because I am adrenaline dumping, and I know that, but just the fact that I am adrenal dumping makes me angry. At myself.

See, I made the decision to quit opioids in favor of LDN in something of a rush. I had been humiliated by the substitutes for my PCP when she was out on maternity leave. She’s awesome, and has been doing my pain management for years, and neither she nor I were expecting problems.

But there were. And I was treated like a drug-seeking addict. Which I’m not. I’ve been the model, compliant, chronic pain patient.

So I was humiliated, and worried I was going to run short, and hearing all these good things about LDN, so I just said, “fuck it, I’ll quit!”

Just like that. With scarcely any research into opioids, or withdrawal, or what to expect.

I had no clue just what a mental, emotional, and psychological firestorm I was walking into.

Everyone knows opioids causes physical dependance, and everyone who decides to quit them knows there will be some horrendous physical withdrawal symptoms.

I didn’t know, though, that for everyone who goes through withdrawal, however slowly (I’ve done it in steps, and stalled at 17mg), it is a crazy rollercoaster emotional ride.

In acute withdrawl – when taking those steps down – first comes extreme anxiety, nervousness, the restlessness of a caged tiger, irritability and extremely irrational anger.

Most importantly, I didn’t know that the wild anger (and there’s a lot of it) and waves of fear – the “I can’t do this!” panic – is caused by adrenaline dumping – the “fight or flight response.”

That little nugget was hard to come by.

Now I know that the repeated acute withdrawal caused by “stepping down” my dose every week or two left me with some serious adrenal insufficiency issues. Issues I’m still dealing with, and will be for some time.

I didn’t know Opioids are such psychoactive compounds.

They affect far more than just our perception of physical pain. When you decide to quit them, it affects many aspects of brain functioning and neurotransmitter levels.

Many people turn to illegal opiates, whether Oxycontin bought off the street, heroin, or whatever, in an effort to numb themselves from the painful aspects of life. In getting high, they don’t have to feel the pain – not even emotional pain.

But this effect of opioids on our brain, on our emotions, this numbing, this “emotional flattening,” also affects those of us who aren’t using opioids to get high, who are using them only for physical pain. The effect is so slow, as our doses are slowly increased, that we often don’t even realise anything has changed.

To make it crystal clear for anyone who hasn’t been following my saga, I have never sat around feeling “high” from my pain meds, because I have taken just enough to take the edge off my physical pain. There has certainly been nothing like a “pain-free” day, because I didn’t want to take a big dose – I rarely asked for increases in my daily dose, despite the fact that tolerance builds up very fast. But I’ve been on them a long time, so was taking a pretty substantial dose when I started this process. I am physically dependant, not addicted, and there’s a big difference.

I touch the fire and it freezes me
I look into it and it’s black
Why can’t I feel?
My skin should crack and peel
I want the fire back!

Walk Through The Fire

Over the decade I have been on opioids, I did notice that my emotions were flattening out: I rarely got angry, or truly happy, and somewhere along the way, I pretty much stopped crying.

I did really wonder about that last bit – there has certainly been plenty to cry about. I reasoned that I was just resigned to my situation, that I had accepted the unacceptable.

Being “flat” was an okay place to be, given all the loss of the last 10 years: the loss of functioning, the extremely reduced quality of life one has when housebound, the horrifying changes in my body I see when I look in the mirror and allow myself to really see, and personal losses, too.

There were moments when it would hit me, and I wrote about some of those moments. After a few hours, a day at most, though, I would just go back to being flat.

But when you start to taper your opioids, suddenly everything rushes in – everything you didn’t feel while you were taking them.

And then there’s PAWS

Over 90% of people who quit opioids develop PAWS: Post Acute Withdrawal Syndrome, aka Prolonged Acute Withdrawal Syndrome.

PAWS is what happens when your brain is playing catch-up. You may have gotten entirely off opioids, or, like me, gone down too fast, and be “stuck” at a low dose, experiencing “milder” – but still very significant – withdrawal symptoms.

PAWS can last months, or even years, and usually comes in waves – you may be fine in the morning but by afternoon, you have been dumped back into withdrawal again, or fine for a few days until another wave catches you off-guard.

And PAWS is that emotional firestorm, along with waves of physical withdrawal symptoms, too.

Imagine if your brain is a mass of electrical wiring, and opioids have been providing “insulation” for years, and then suddenly the insulation is stripped away – the sparks will fly!

I thought I was going to avoid PAWS. After all, detox centers do it in a week. I was planning on 2 to 3 months. Surely that would be slow enough, right?

Wrong. Once again, I should have done more research. It wasn’t. Not by a long shot.

It will take months for my brain to re-balance itself, especially since I’ve been on opioids for a decade.

Nifty knowledge nugget: people in PAWS often meet the criteria for being Bi-Polar. I can vouch for that.

Oh, and PAWS also causes significant cognitive impairment – something we ME/CFS patients already have in spades. Disjointed thoughts, memory loss, inability to concentrate, insomnia – you name it – all on top of the existing cognitive impairment!

So, yeah, I’m angry at me, because I’ve spent the last 6 weeks in heavy duty PAWS, coupled with adrenal crisis.

So this is what it is for me: it’s everything I didn’t feel for 10 years. All at once.

A jumbled up mess of anger, sorrow, anxiety, grief, fear, rage, depression, mourning, and, very occasionally, a brief glimpse of happiness.

Along with all that, thoughts fragment, and shatter in all directions. At times, I am manic, and at times, I’m just a blank slate, as my overloaded brain shuts down.

Every day is different, and sometimes, every hour is different.

It can hit very fast, and I call it “crazy-brain.” It’s usually accompanied by a big wave of physical withdrawal symptoms, ones that make me want to crawl right out of my skin. I often have a hard time thinking at all, even composing words into a sentence.

There are just feelings. Often, very uncomfortable feelings. Dark feelings. Not associated with any particular event, or memory. Just waves of darkness and black moods.

And I am caught in the fire
At the point of no return
So I will walk through the fire
And let it
Burn
Let it burn!

When I understood what was happening to me, where these feelings were coming from, I decided that trying to block them out, or ignore them, was not the way to go.

This is a fire I have to walk through – because I want the Fire, the passion, back in my life.

These are feelings I should have been having, but didn’t. Repressing them isn’t going to make them go away.
But maybe embracing them will.

So that’s what I’ve been doing.

Sometimes, I listen to music, very loud. I have a playlist I actually call “neural overload.” Something about familiar songs, the sound reverberating in my ears, helps get me through the physical withdrawal – the feeling of ants biting me all over, of rats gnawing on my bones… my mind can’t process the signals of the phantom pain and the music at the same time… and the darkness of the music matches my mood, gives it focus. Like when you have a heartache, and listen to the saddest songs.

All I know is, it helps.

So this is me, walking through the fire.
This is my brain on crazy.
I will get through it. I know that.

My adrenaline has run out. I’m not angry anymore.

I thank those of you who are my much neglected friends and soul-family, who have wondered at my absence from your life, and who have sent words of encouragement. You all mean the world to me, and I’m sorry I’m not able to be there for you right now like I would like to be. Not to worry – I’ll be fully back when I’m done walking through the fire, and if you need something, just shoot me a facebook message.

Much Love to my friends, family, and tribe.
Ash

Advertisements

Quitting Opioids: Stormy Seas and Taking On Water

It's been stormy sailing... Image: Pirate In The Storm by Peter Concept

It’s been stormy sailing…

Image Credit: Pirate In The Storm by Peter Concept

Frank Talk On Pain and Pain Meds:

As most of you know, I decided to quit opioids for pain in favor of LDN in March, and after 10 years on opioids, I began the process of tapering my dose on March 24.

Some of you have asked for an update, so, in the very simplest of terms, on the one hand, I have made tremendous progress – from 80mg of Oxycontin to 17mg. But, on the other hand, the last 3 weeks, things have been very rough – stubborn me went down too fast, and withdrawal sent my body into a tailspin, with severe diarrhea leading to dehydration, electrolyte issues, more weight loss, and kicked off adrenal insufficiency.

I also have opioid withdrawal syndrome – repeated waves of withdrawal even when I’m not taking a step down, with gnawing pain, insomnia, tremors… and the psychological impact of withdrawal on the brain – feeling periodically like I’m having a nervous breakdown and being very seriously cognitively impaired.

Right now, I’m holding at 17mg on doctors’ orders while we try to get this ship to stop rocking and taking on water.

I had wanted to wait to write an update on the process until I was done, so as not to discourage anyone from making the same decision, to triumphantly say, “Look, I did it, and so can you!”

But it’s not that simple.

Life with ME/CFS is never simple, and I guess I should have known that this process was really going to throw some curve balls at my delicately balanced system, but I wasn’t thinking that far ahead.

I had set a goal:

To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.

– from “Frank Talk on Pain Meds: Jumping Off Into The Vast Unknown”

I set out to achieve it, without really knowing what I was getting myself into. I knew I had to taper the dose in steps down. But let’s face it – it’s not like there are any studies out there on underweight, severely debilitated, ME/CFS patients, who have been on opioids for over 10 years – and how long you’ve been on them matters a lot.

There’s a lot of debate about how fast a healthy person can go down “safely” without long term consequences – because there are long term consequences if you go too fast, a condition called PAWS (Post Acute Withdrawal Syndrome). Essentially, PAWS is a recurrence of withdrawal symptoms that can occur periodically for weeks, months, or even years, after a person gets off – or, as I’ve discovered, reduced their intake of – any drugs that cause physical dependance. PAWS is why many addicts relapse.

But stubborn & determined, and without understanding about PAWS (yet), I set out to taper or step down my dose “as fast as I can physically and mentally handle it.”

Withdrawal is horrible, it is hell, and even though I was doing this in steps, every single step down has meant going through withdrawal for a number of days.

“Slow It Down!”

The chorus from friends and family was pretty nearly immediate, loud and clear: “You need to slow down.” For the most part, that was more because of the emotional repercusions of withdrawal – the sporadic rages, unreasonable irritability, the jitteriness that had me pacing the floor.

In the middle of April, when my LLMD found out how fast I was going down, she was appalled, and she joined the chorus. In 3 weeks time, I had already gone from 80mg to 45mg. She told me I should go down 5mg every 3 weeks – but that sounded to me like it would take forever, and my PCP, who manages my pain & opioids, had approved my proposed tapering schedule.

I slowed down some, and lengthened out the time between steps to 10 days and then 2 weeks, figuring if I’d gone thru the acute withdrawal and my body had settled down, it would be okay to take the next step.

But every step down, the withdrawal got worse, much more intense, and longer lasting.

Hell Week

June 15, I took the step down to 17mg, and all hell broke loose.

For the first time, I had severe GI issues. I had had mild diarrhea with the step before, but this was severe, and went on for 6 days. The big problem with this is I only weighed 112# when I started this process. I can’t afford diarrhea.

The wisdom in the opioid withdrawal forums directed me to copious quantities of Immodium, which supposedly binds with opioid receptors in the gut. It helped, but I was afraid to take as much as some people said they took, so I soldiered on.

I just had to get through it and out the other side, right?

So, I dealt with it as well as I could. I worked hard to keep my body hydrated & electrolytes in balance. That was challenging, as was keeping my bp in range due to my NMH (neurally mediated hypotension) – it is normally not an issue, but suddenly it was, and my BP kept tanking, meaning on-the-fly adjustments to my florinef, and a lot more sea salt and potassium. I was scarily weak at times.

And withdrawal like this is pure hell:
The feeling of deep pain in your bones, especially arms and legs, like they are being gnawed on by rats; a burning sensation on my skin, like I’m being bit by fire ants; crushing headaches & migraines; the shaking and tremors; nausea; insomnia; restlessness that had me pacing the floor even when I was utterly exhausted; chills/sweats; and the emotional rollercoaster – and that’s the short list.

I drank gallons of kratum tea – a legal herb from SE Asia which binds with the opioid receptors and has a calming effect on both mind and body. It contains no opioids, and doesn’t make you high or anything, and is very safe, having been used for thousands of years in its native Thailand.

I also took a lot of theanine and tryptophan, two amino acids that’re helpful, valerian, skullcap, klonopin, and anything else I could think of. Supplements are my very good friend – especially when I’m not absorbing either food or my meds because they’re running thru me so fast.

It was during this week that I really should have picked up that my adrenals were in trouble, because I started having “adrenal dumps” – definite surges of adrenaline into my system, leaving me hyperalert & agitated, fingertips tingling, body ready for “fight or flight,” followed by periods of deep exhaustion.

But I wasn’t thinking clearly enough to pick that up, and just chalked it up to withdrawal. I was having trouble thinking at all.

Redux

Finally, I had gotten through the worst of it, although I was still having some lingering withdrawal symptoms.

But on Monday, July 1, a full 2 weeks after the step down, I woke up thrashing from the now-familiar feeling of rats gnawing on my bones – hard. Soon all the withdrawal symptoms I thought I had left behind washed over me like a wave, drowning me.

My gut was churning & gurgling, and had been since the night before, and really severe diarrhea set in. There were such outrageous sounds coming from my gut that Rhiannon & I took to joking that Nessie (the Loch Ness Monster) had hatched and wanted out. Gallows humor is better than no humor at all.

By the end of the day, I was feeling dangerously near collapse. I struggled to think my way out of how I felt. The withdrawal was one thing, but this level of weakness & shakiness & altered mental status was clearly another. Worryingly, my weight had plunged to 103#.

Something was very wrong – dehydration, electrolytes, or something else?

Rhiannon made up homemade “gookinaid” and I guzzled it down, along with coconut water, and I soaked in epsom salt baths (for magnesium).

The next day, Tuesday, I contacted my doctors, as the situation continued, with only a slight improvement. My LLMD could see me the next day, and both said if I got any worse to go to the ER. Rhiannon and I discussed the situation at length – and the fact an ER doctor was going to be pretty clueless about what to do with a debilitated ME/CFS patient on so many meds in the middle of withdrawal.

Wednesday, my gut had mostly settled down, and the withdrawal was easing a little. I was extremely cognitively impaired, and completely exhausted, almost too tired to hold my head up.

My LLMD patiently listened, pondered, administered IV hydration with extra minerals for my dehydration & methyl B12, took tons of blood for labs, and ordered stool tests.

Her opinion was that it was likely opioid withdrawal syndrome – PAWS – complicated by adrenal insufficiency, but she’s not one to ever overlook anything, so she’s checking many lab values and for gut infections, etc. My cortisone & adrenal supplements were increased, meds adjusted, etc.

Since then, I’ve had a lengthy visit with my excellent PCP, who concurs.

The working theory is that the repeated stress of the steps down overworked my adrenals – I already had serious adrenal issues, and this just made it worse. In retrospect, I may have been having an Addisonion (adrenal) crisis and likely should have gone to the ER – but now I know the signs of one, I will if it recurs.

Both doctors ordered me not to take another step down for a month.

PAWS

I am ever so slowly recovering, but waves of withdrawal keep washing over me – the gnawing pain, the ants crawling on my skin, diarhhea, and the freaking brain.. opioid withdrawal sure does do a number on your brain, on your emotional, mental, and psychological state.

I like dog paws and kitty paws, but I don’t like these PAWS.

Frank Talk On Pain Meds: Introduction – Jumping Off Into The Vast Unknown

Those of you who know me know I am all about being 100% honest and real, all the time. No little white lies. No quiet deception. Well, it’s not going to get any more real than this series, Frank Talk On Pain and Pain Meds, and what’s to follow in the next few months.

The issues of pain, pain meds, and the relatively new medication, LDN (Low Dose Naltrexone), have consumed my world for the last 3 weeks, as I wrestled with, and then came to what, to some, will seem like a rather drastic and risky decision: to get off the opioid (sometimes called opiate, or, erroneously, narcotic) pain meds that I have been on for the past ten or eleven years, in order to give LDN, a trial run.

You can’t have it both ways – it’s one or the other.

This was not an easy decision, nor one to be made lightly.

The pain that ME/CFS and FM (fibromyalgia) patients like myself experience is very real, very intense, and a constant part of our daily life.

Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.

Those of us who are lucky enough to be on opioid pain medications know just how lucky we are, as we all have friends who aren’t so lucky. Chronic pain is both emotionally and physically draining.

As I discussed my idea with a few famly members and friends, and reflected on the past, I realized exactly how much misinformation, misunderstanding, and what a terrible stigma there is around the use of opioids in chronic pain patients.

It turned out I had a lot to say about it, but, as I started weaning myself off the opioids I have been on for more than a decade on March 25th, maintaining a clear and rational thinking pattern has been quite challenging at times (perhaps the understatement of the year). Believe me, I’ve tried to whittle this down, but am tired of editing, so here it is:

Frank Talk On Pain and Pain Meds:

My stated goal:


To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.

Because I don’t know of anyone who has gone from 10+ years of opioid use and then onto LDN, I feel a certain responsibility to share this experience with you, my friends and fellow patients, in case you, too, are contemplating the same choice.

Withdrawal is not fun, I can tell you that now, but then, you didn’t think it would be, did you? What I’ve been experiencing will be the subject of future posts.

As of today, April 14th, I’ve cut my dose down to about 40mg a day. Just about half way there, but possibly going a bit too fast – more on the delights of withdrawal in future posts.

My Reasoning

The stigma that surrounds opioid use is one reason behind my decision, as my PCP, who has been handling my pain management, was out on maternity leave for 3 months, and I was faced with uncooperative members of her practice who left me wondering, day to day, whether I was going to run out of my meds or not. During an appointment with another provider, I was treated like a drug seeking addict.

I am not addicted to my pain medications, as I explained to her. I am physically dependant. There’s a huge difference, one she should have known. I explore these differences in Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance.

I left feeling absolutely humiliated, and with only a few days worth of meds. My awesome PCP soon came to my rescue, despite being still out on leave, but the experience left me pondering the precariousness of my situation.

The other reason behind my decision was recent research and articles I have read touting how effective LDN is, not only for relief of pain, but also possibly for assisting the immune system to re-balance – something I am increasingly in dire need of.

I spent several days in deep contemplation and research, before finally deciding to take the plunge.

Much to my relief, my awesome PCP is behind whatever decision I make. As her large practice’s fibromyalgia specialist, she has already put several patients on LDN, with good results.

Read on, please, and feel free to share and comment!