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Withdrawal is the worst.

I mean, here I have an illness and the pain is just unbelievable. And then I find getting off opioids is worse than that.

It all began in 2004. I got hit with something called Ramsey Hunt Syndrome. I call it the evil cousin of shingles. It’s the same virus. Basically, all you have to have done to get it is to have had chicken pox when you were a kid. But it’s rare enough that nobody’s doctor ever diagnoses it correctly. That’s what happened to me. So I got sicker and I got sicker. This thing attacks the nerves in your face. It looks like Bell’s palsy. It feels like – oh my God, it’s nerve damage. It’s insane pain.

Now the doctor, the same doctor who misdiagnosed me, gave me a whole mess of meds, antivirals and things, and he threw Oxycontin actually, into the mix.

And after awhile, I didn’t know why I was sticking to him so I went to a specialist neurologist. Unfortunately, I was seeing that neurologist for more than ten years. She would put me on higher and higher does of opioids. And I didn’t even know what they were. And I remember that I’d been on them for several years, and it started to dawn on me that opioids might be the same thing as narcotics.

There was no publicity about these drugs at the time, and in fact she told me they were non-addictive, which is what the manufacturers said at the beginning.

But I was just beginning to figure this all out, and I said to my neurologist, “Is there any difference between these drugs you have me on and heroin?”

And she said, “Oh, it’s totally different from heroin. When you buy heroin on the street, you never know what quality you’re getting. And this is pure. This is good stuff.” And I’m like, Oh no. And that was when I first realized I was in big trouble.

They had me on an enormous amount of Oxycontin and Percocet around the clock. This went on for thirteen or fourteen years. Every once in a while, I would realize that they weren’t doing a very good job compared to what they’d done before so I would want to get on more. And she’d prescribe more.

It was only in the last couple of years, things changed so much. All of a sudden there is heat coming down on the doctors for prescribing this stuff. So, all of a sudden my neurologist -- she just totally changes her tune. But she doesn’t just change her tune. She starts to rewrite history. And it was something that my wife and I both noticed. She suddenly started saying things like, “Well, that’s why I’ve been trying to get you off these drugs bcause they’re not good for you.” And it’s like, You’ve never said that before.

By this point, I was on such a high dose -- because your body adapts and it starts tolerating a higher and higher amount to just do the same thing. And what eventually happened was we managed to immediately lose an entire huge vial of Oxycontin as soon as we got the prescription filled -- which we later found. But, while we couldn’t find it, I mean all of a sudden I didn’t have any, and my neurologist just freaked out. She became convinced that somebody was selling them or something was going on, and she wouldn’t prescribe anymore, probably because she couldn’t prescribe anymore, but I don’t know.

She just fired me as a patient. She gave me a referral to a pain clinic. But she didn’t follow up with me or anything. And I guess what most people would do is immediately go on the street and try to buy heroin or something. I mean that -- I could see exactly how that would happen.

But, I just realized I’ve got to detox myself and I’m not going to go to a clinic. I’m just going to do it. But it took a long time and it was horrifying.

You’re incredibly hot and then you’re incredibly cold. And I mean like you can put on all the clothes you’ve got, and cover yourself in blankets, and you’re still freezing. And sometimes your head is sweating uncontrollably and you’re unbelievably hot in your head but your body is cold. And you’re just in horrible, nagging, gnawing pain.

It also does a horrendous thing to your digestive system. When I first got on these drugs, I got so constipated I thought I was going to die. But when you’re getting off the drugs, of course you have the opposite situation. I mean, this is disgusting this part of it, but diarrhea isn’t even the right word for it. I mean it’s just about a hundred times worse. And it doesn’t stop. I mean even after you finally wean yourself off the drugs, it lasts for another month.

I started about the week before Christmas. I did not completely wean myself off till sometime in February. But I do feel better than I did when I was on the opioids.

The other thing that kills me about it is how expensive it was, because insurance just paid for a very small amount. And boy, would I like all that money back again.

It was like climbing down a totally vertical rock cliff. So you’re terrified. And you’re working your way down, climbing down and climbing down all day long for a really long day. At the very end of it, you look down, and the ground isn’t any closer. That’s what it was like.

I’m Andy Seiler and this is my story.