Quitting Opioids: Stormy Seas and Taking On Water

It’s been stormy sailing…

Image Credit: Pirate In The Storm by Peter Concept

Frank Talk On Pain and Pain Meds:

• Introduction – Jumping Off Into The Vast Unknown
• Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
• Part 2: Pain Management Myths and Misconceptions
• Part 3: My Personal Journey
• Part 4: Stormy Seas and Taking On Water (Quitting Opioids) (you are here)
• Part 5: Walking Through The Fire (Quitting Opioids)

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.