Ted Stout -The Doctors Who Failed Me

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If Ted Stout had continued to follow the advice of his doctor, he might not be alive today.  The prescribed opioids reduced the physical pain he suffered from Postherpetic Neuralgia -- until they made him much sicker. Then he took matters into his own hands.

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I was 38 years old and I thought I had a sinus infection, up towards the forehead, above my eye, behind my eye. The pain in my trigeminal nerve was intense. Eventually I went to the doctor, and he said, “Look, you’ve got a rash under your hairline. You have shingles. It should last about a week and you should be fine after that.”

Well, I wasn’t fine after that, and it just lingered. I went back and he said,“Well, we’ve come to the conclusion that you have post herpetic neuralgia.” The nerve was damaged and would never fix, that the only thing to do at this point was pain control.

Well, I didn’t quite trust this doctor and found a doctor who was a very well respected doctor in the Fredericksburg area. Right off the bat, he prescribed opiates. And I saw some pretty immediate help with the pain. But it kept coming back. And it kept getting worse. The doctor just kept throwing more medicine at me. And he said, “Well, if you feel any pain, if you feel a tingle, take the drug. You want to nip it. The more you allow pain to happen, the worse off you will be.”

Ultimately I was on something called morphine sulfate ER, and it was a time-release morphine. I came to find out that the stronger medications would take the pain down a little bit. For a couple of hours, it was like oh, whew, relief. And then after about two hours, it started to creep back in. And I kind of would joke that the pain was made at me because I was trying to get rid of it and it was coming back with a vengeance.

Frankly, I never got a buzz off of that. I didn’t even know I was taking it. ut I sure knew if I didn’t take it. And it just felt like I had little boa constrictors wrapped around my bones, my tendons – there was no comfort. It probably took a couple of times before I put two and two together, and I started feeling that it was time to get off of these things. If my body was this dependent on this drug that I didn’t even feel! So I went to the doctor and I said, “I think I should start to get off of this stuff.” And he was adamant that I don’t. He said, “You’ve come this far. It took us this long to get to this point, why would you want to mess this up?”

The doctors who you assume were doing their best – they are humans too. They will take the easy way out when they can. Plus they want to give relief. You know, I was in pain. “Here, take a pill, you won’t be in pain anymore.” I said, “Okay, but I still feel that we should start trying to get me off of this.”

So in 2014, I had a TIA stroke. It was scary. I was 49 years old, lying in a hospital bed, and I said to myself, “You’ve got to make a change. You have to take control.” This had been going on for about 13 years. I decided that I would get off of all medications, every single bit. And I found a facility in Virginia. I contacted them, told them what was situation was -- pain from post herpetic neuralgia in my trigeminal nerve -- and I said, “All right, well, I’m sure you can get me off of this stuff but what about the pain that happens afterwards? Because it will be there. The pain will come back and I have to have a pain management program to fall back on.”

They assured me that they did. They said part of you know, getting rid of this addiction was having a very comfortable bed and comfortable surroundings and all these things. OK, great. So I show up there and it’s-- it might as well have been a mattress off of a gurney. It was rubber, or plastic, with an old sheet on it. And I get that that’s how it should be, because when you start getting off of these drugs and it’s just nasty, nasty, nasty. And there were times that I couldn’t even make it to the bathroom in time. I couldn’t do it and I was lying there in my filth.

After three days there, and I’m getting off the morphine, I had not seen a doctor yet. And I was talking to the nurses there, saying, “When does the pain management part kick in? The pain is bad right now. You know, I’m off of this one drug and the pain is so bad, I would say it was a ten.” Now a ten probably is I want to hang myself and die. I really felt that way. I said, “If you don’t let me see a doctor right now, I am driving out of here.”

One of the nurses I called Nurse Ratched. She just kind of told me I was being a baby, and that if I left this facility she would call the sate police because they give – they give you something, I don’t know what it is, to try to help you get off this stuff and that that impairs me. And if I get in my car to drive, she will have me arrested. We’re in the parking lot, yelling at each other. I mean it was – it was awful. I’ve never been treated that way in my life. And I was paying for this, you know.

The fifth day I was there, the head doctor of the whole place called me into his office --beautiful, lavish office -- sat me down, and I’m thinking Great, now I’m going to get the plan. And the plan was to tell me that they had no plan. They talked about it. They monitored me, did some more research into it and found out that they had no plan for me. But I was welcome to stick around for 30 days if I’d like.

I broke down and cried. It was – I get a little…

I felt betrayed. They told me they had something. I put up with crap. I put up with Nurse Ratched. I put up with being an inmate. And now they’re telling me, Oops, I guess we should have looked into it a little more.

I did have Plan B. There is a place in UNC – UNC Chapel Hill Healthcare-- and they have a very well recognized trigeminal neuralgia program there. And, two and a half hours I talked to these people. I felt listened to for the very first time. It was like Hallelujah! They go to the root of the problem. They don’t mask it. They’ll be no drugs given. They told me to try Tylenol and ice. What they did was they gave my body a chance to get strong and knock this thing out.

He suggested that I go see a chiropractor every week and get a massage every month. Change my diet – organic everything. Don’t drink coffee. Don’t drink alcohol. Drink a lot of water. He said fat will help repair the nerve damage. You need good fats like avocado fats to heal your nerve. He said your body wants to be good. What you put into it, what you put on it, is going to affect everything, and if you are predisposed to this condition, every bad thing you do is going to cause you a problem. Every good thing you do will strengthen your body and it will make things so much easier for you, you will be able to do this without drugs.

I believe that the nerve is mostly fixed. It took about a year and half for me to get totally good. And I know that opiates will make it flare up again. And I know that some will say,Wow, that’s great, but I could never do that. I know people who’ve done it and they are happier people for it. Do they still have pain? They do, a little bit. But are they better off for it? Yeah, they are better off without the opiates. Opiates should be a temporary thing, not for chronic pain. It will kill you. Or you might kill yourself. I came close because it just seemed like there was no way out of this.

I’m a very private person but if my story can help one person realize the dangers of extended opiate use, it’s well worth being uncomfortable with my story being out there in this world. If you hear this, know that you can do this. If I can do it, you can do it. And please try. Give it at least a try. You won’t be sorry.

I’m Ted Stout and this is my story.

Andy Viner Seiler -Surviving Withdrawal

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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.