Andy Viner Seiler -Surviving Withdrawal

Andy Viner Seiler was prescribed opioids by his doctor to deal with pain.  He was hooked and his doctor wasn't helpful.

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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.

Bob Nicklas -Fentanyl Saved My Life

Bob Nicklas underwent a complicated surgery to treat his lung cancer.  Fentanyl was the only drug that brought him real pain relief.  His doctors were vigilant about getting him off the drugs as soon as he could manage it.  

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Throughout my life, I’ve had a high tolerance for pain. I once played volleyball for two hours on a fractured ankle.

The doctor said you’re probably going to have some considerable pain. It gave new meaning for me to what considerable pain was.

Back in 2014, midyear, I developed shoulder pain, the type of shoulder pain you get maybe from lifting the wrong way. I went to an orthopedist. He suggested physical therapy. Went through physical therapy off and on for several months. It did not get better. Finally my wife said, “Look, there’s something wrong here.” We went to an emergency room, and within an hour the doctor came out and said, “I’ve never learned how to dothis any other way but directly – you have lung cancer. “

I had advanced stage three cancer.

In December of that year, I had what they call a lobectomy. So I had the upper left part of my left lung taken out, three ribs, various associated muscles, nerves. It was a seven-hour surgery. It was pretty extensive. To this day, I remember waking up in the recovery room, my wife Terri was there, so was my son Tim and my daughter-in-law, Karlee.

The first words that I remember out of my mouth were “Please someone help me with the pain.” I have never experienced pain like I had.

For the next what seemed like a lifetime, but it was over the next half hour to an hour, they played with a combination of painkillers which included fentanyl, oxycodone, a nerve medication gabapentin, and morphine. Finally, I felt like I was drifting off. The cocktail had begun to do its work.

I was in the hospital for six days. Once I got home I remained on gabapentin, fentanyl, and either oxycodone or Oxycontin -- whichever was doing the most effective job.

For me, fentanyl was probably the most effective. I was on a patch. I can’t remember exactly what the dose was but the patch was changed every three days. And I was on that for probably a good six weeks to two months after I was done with surgery. I still had pain throughout the day. Now some of that pain was just the surgical pain of having an incision, which went from the bottom of my neck down to below my shoulder blades. I could barely comfortably lean back. And that lasted for several weeks, even with being on the cocktail I was on. The fentanyl, though, was the most effective at keeping the pain down to a manageable level. And it was also the last drug I went off of.

Thankfully, I was at Johns Hopkins, and the doctors there basically, from the day of post surgery, were encouraging that I should take the drugs for as long as I felt I needed them but to be aware that the goal was to go off of them. Which was, I think, an important mindset because the pain could be really severe at times. But I was committed to try to go off of them in as rapid and judicious a way as I could.

I was a smoker. I was addicted to tobacco. So I had some firsthand knowledge of what addiction can do to you. I was in pain because of my addiction to tobacco.

My father was a doctor. He was in practice with someone who became addicted to heroin. And when my dad discovered it personally – I mean he walked in on his partner injecting heroin, and he left within the month. My dad was the one who – he would try to prevent people from becoming addicted. I mean, he knew the power of the drugs that he was at times providing. And I was bound and determined not to become addicted to painkillers.

As I was discharged from the hospital, I was given instructions that when I was ready, I could follow to slowly get off each of the drugs, and a suggestion as to which drug should go first, which should go second, which should go third. And the staff would regularly check in with me, and I had to check in with them. And they’d say, “Do you think you’re ready?” And at a certain point, I said, “Yeah, I’m ready. I want to try to start going off.”

I didn’t experience any withdrawal. And I think it was because of the phasing. My doctors had a good sense of which one to go first, second, third, and a timeline to do it.

I have been a lucky person. A very lucky person.

I’m Bob Nicklas and this is my story.

Capt. Tyrone Collington -Alternatives to Incarceration

Captain Tyrone Collington is the commander of Takoma Park, Maryland's patrol division. His #1 mission is to save lives. Sometimes that entails the use of a powerful tool called Narcan.

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Well, our number one priority from a police perspective is to save lives, and that’s what we want to do.

For our department, there are a number of us, including myself, that are trained to administer a counter drug treatment that you can give someone who you suspect to be overdosing, and what it does is it knocks off the drugs and revives the person, brings them back around. Even if it may not be an opiate, it’s harmless. It won’t cause any other type of medical effects.

Seeing people just strung out, unconscious, unresponsive, eyes may be rolled back in the head, shallow breathing, sometime they may be clammy, cold – it’s troubling because at this point you don’t know how long they’ve been unconscious, you don’t know what drug they are under. So you don’t really know how to begin administering any type of resuscitation or first aid. And you have to be careful that you don’t confuse that for some type of diabetic episode.

Sometime we get the calls from someone saying a friend has overdosed. And we have had anonymous calls where people have been left in bathtubs and it’s so sad. They don’t want to remain on the scene because they don’t want to be involved. So they’ll put the person in the cold water and left them which puts them in even more danger because they could drown.

So we have to get them out of the tub and then we’ll immediately administer the Narcan drug, two squirts, one in each nostril, and that will within there to five minutes start to revive the person.

To see them come back you feel like you’re helping this person live, you’ve just saved someone’s life. But I have been on scenes where I’ve seen the same person in the same state, unconscious, and you just ask yourself, you know, how many more times are you going to be able to come here to save this person before one time it’s too late.

I’ve encountered many different age groups, different colors, different race. You have a lot of professionals, students. Sometime when I see them I’m surprised, especially if it’s someone that I’ve dealt with within the community. And so I always say, You know, you never know what a person is going through, what demons they are dealing with within themselves. It’s a sickness. It’s an illness, and it’s important for us to educate ourselves, educate the community on, you know, how can we prevent this, what signs to looks for, and how to proceed with trying to get them treatment.

I’ve met a lot of good people who have had whatever setbacks and I’ve had conversations with them like, How did you get here?

One incident that really stick in my mind was an individual that told me he was using for 25 years. And I asked him, "How do you continue to look at your body just deteriorate?" And he said, "You know, sometime you just -- you need it. It’s a sickness that we’re dealing with. In our mind, we believe that we can’t function without it."

So when I see people on the street using, immediately I want to refer them to like some type of health and human services. I want to get them to talk to someone. There’s always alternatives to incarceration.

Not all the people that use drugs are bad people. You know, sometimes, you know, they have chronic pain, like back problems, you know, any kind of problem. They get medication, hard narcotics, and become addicted to them. That doesn’t make them a criminal.

So it’s more important for me to try to get them help, wean them off the drug, than put them in some kind of confinement.

You’re taking people away from their families, you’re taking them away from their jobs, you know, you’re taking them out of the community. If it had not been for this sickness, they would be productive citizens. These are someone’s, you know, wives, sisters, brothers, daughters -- loved ones.

Sometimes they just need treatment. You know, if you really want to get to the root problem, let’s get the person some help, especially if we’re not catching them breaking in the house or anything like that, we just find them using on the street.

I can come up and have that conversation, like, “What got you here?” That’s important to me. Let’s find out what really happened as opposed to “This is illegal, I need to take you to jail.” Because that’s not going to solve anything. You’ll go to jail, you’ll get back out, you’ll use again. But if I can help you to find some kind of medical treatment, I’m willing to do that, to save you, save your family, save your life!

Just saving one person means I’ve done my job but there are a lot more out there to be saved.

I’m Capt. Tyrone Collington and this is my story.