A patient wants to know your thoughts on frequent fliers... - page 3
First of all, forgive me, as I'm sure this will be a long post. Also, it's my first... so hello. To be clear, as the subject states, I am a patient and not a nurse. But given my history I'm... Read More
May 30, '13Thanks for that very enlightening response, mike.
It's interesting that you brought up the appropriateness (or rather inappropriateness) of these meds for migraines, and the same generally applies to clusters. In fact, I was in pain management once before for a recurring pilonidal cyst and my headaches started right after going cold turkey off a very large dose of oxycodone because the nurse practitioner who was treating me was cutting down my dose by huge amounts each time we reduced. I figured that if I was going to be sick anyway, I wanted to get it over with. Anyway, the clusters started not four or five days after the worst of the withdrawal symptoms subsided and at first I just assumed they were (very bad) rebound/medication overuse headaches.
I made sure that the first doctor I saw kept that in mind in terms of treatment and spent a really long time just "toughing them out" and waiting for the preventive medicine to kick in, as is usually the case when treating rebound headaches. After a few months of this and the headaches getting worse the doctor thought it was unlikely to simply be rebounds. To the best of my knowledge, different medications cause different quality rebound headaches, and for the most part I believe narcotics cause rebounds which are very similar to migraines. I'm sure it varies from person to person, though. I still stayed away from the narcotics for a long time and continued to tough out the majority of attacks and treat the worst ones with imitrex... but here we are.
Sadly, that was a long time ago and being a chronic sufferer as opposed to episodic, I think part of the issue is simply not having the same resolve as I did when they started. I had one sort of remission with a headache or two a week for a couple of months back in 2011, but other than that it's been relentless and boy oh boy does it wear you down. When I look in the mirror I hardly recognize myself these days, compared to the person I saw a few years ago. Rebounds continue to be a concern when using opioids to treat the clusters, but I guess right this very second we're just trying to worry about the pain I have right now versus the pain I may have as a result of using these medications.
All that said, I am very happy to report that I haven't been in the ER in almost six weeks. This might not sound like a big deal, but that's probably the longest I've been able to go without a visit in a VERY long time. The one piece of bad news is that for a variety of reasons I do not think this pain management doctor is for me, but I do believe it's the place to be right now so I am going to work on finding another one who is closer by.
May 31, '13Quote from anotheroneThank you, yes!! I use distraction as a way to cope. It's one of the only ways I can keep it together. I might be on my phone, I might even read, but that doesn't mean my head doesn't hurt. I still smile when I'm in pain, because I attempt to be as pleasant and cooperative as possible. You can rarely look at me and know when things are bad for me, unless you know me very well. I look FINE on my worst days, and it's because I've been dealing with my illness for years.The whole " patient doesn't look to be in pain" is so subjective for many patients. Yeah some fake it to get dilaudid but some people are more stoic then others. I always go on my smart phone as a means of distraction or try to focus on the tv.
May 31, '13Quote from nursemikeNarcotics can be used quite effectively for some migraine patients. For episodic migraines, maybe not so much. Yes, triptans are a better option. But for some of the chronic patients, narcotics as a rescue med makes sense.My father has dealt with chronic pain for several years. I've tried to coach him how to seek relief without looking like a drug-seeker. I have also discussed with doctors--his (not so much) and on-call for my patients (more often, and sometimes heatedly) that some, maybe most, drug seekers are seeking drugs for relief. (Maybe all, but some for the wrong kind of relief. Drug abusers are self-medicating, but they're using the wrong meds.)
I work in neuro and have seen cluster headaches. I wish you success in finding treatment. I see you are young, so I hope you may "outgrow" them, as some apparently do. As far as how nurses may perceive you, as others have suggested, it shouldn't matter. We have a job to do, and judging you isn't part of that. But I can imagine if I were in your shoes, I'd have the same concerns. I see a lot more patients with migraines than clusters. What I've seen of clusters--you don't wonder if they are in pain. You wonder how they survive. I do recall a time I was awaiting a transfer from our ED and saw on the Kardex that the patient had migraines and fibromyalgia and thought to myself it was going to be a long night. I don't honestly know whether fibromyalgia is a real condition. It has been debated for awhile and the concensus seems to be leaning toward real, but poorly understood. Anyway, we treat it, and some people seem to get some relief. In the past, and perhaps still outside the hospital, a migraine diagnosis had a similar reputation. A lot of times, though, we have imaging that's pretty definitive and you'd have to be pretty stubborn to think the patient was faking.
Still, I wasn't wrong about it being a long night, and migraine patients can be awfully frustrating. You can educate until you are blue in the face and they still want Percocet, because Tylenol "doesn't work." The oxycodone in Percocet lowers the threshold for migraines. Narcotics are contraindicated. Percocet "works" because it also contains acetaminophen (Tylenol) which is so good it can work in spite of the oxycodone. And a significant number of our "migraine" admissions are headaches from drug abuse, secondary to actual migraines. That is, they do have migraines, but the present headache has more to do with inappropriate meds. It's a very hard case to argue, and on top of everything else, when you are in a lot of pain, unconsciousness can look pretty darned inviting.
And don't even get me started on spines. You've been maxing-out Percs for a year-and-a-half before you finally have surgery. If you are lucky you get a day on a PCA, then it's one Lortab every six hours, and you're so resistant from the oxycodone that the Dilaudid in the PCA wasn't getting the job done, and you look at these people with a straight face and tell them it will be better when they go home tomorrow and have other things to do than lie in bed and think about how much it hurts (which is probably true) and that it will be worth it when they heal (which you hope is true).
Patients in pain are a pain. Most of the time, it isn't their fault. And you do have the occasional ortho or trauma with new-onset acute pain and all you have to do is get their ordered meds on time and they're happy campers. Getting a percocet out of the Pyxis every four hours and handing it to someone is NOT the hard part of pain management. Would that it was. And if all you're looking is to get high, hell, that's easy. I can see you three times in a shift and keep you stoned the whole time. But that's rare.
May 31, '13Quote from ClusterheadHey, good for you! When you lead a chronic life, you take the victories where you can. Some days a victory is getting out of the bed.All that said, I am very happy to report that I haven't been in the ER in almost six weeks. This might not sound like a big deal, but that's probably the longest I've been able to go without a visit in a VERY long time. The one piece of bad news is that for a variety of reasons I do not think this pain management doctor is for me, but I do believe it's the place to be right now so I am going to work on finding another one who is closer by.
May 31, '13Quote from monkeybugGood point. I was oversimplifying, mostly based on what we often see with migraine admissions. In my first few years as a nurse, I strongly preferred dealing with neurosurgery residents. I liked our neuro residents, too, but they often seemed indecisive. As a male, "see it, cut it, fix it." is a mentality I can easily relate to. I was a carpenter before I was a nurse. Of late, I'm coming to understand that neurology seems like voodoo because it is like voodoo. Diagnoses are often reached by eliminating everything else, and sometimes never completely reached at all. And treatment seems to frequently be finding something that works and going with it. I'm not opposed to narcs. I'm opposed to pain.Narcotics can be used quite effectively for some migraine patients. For episodic migraines, maybe not so much. Yes, triptans are a better option. But for some of the chronic patients, narcotics as a rescue med makes sense.
Jun 21, '13You are so right that neurology in general basically is voodoo. I don't know if I've mentioned in my other posts here, but I've had a number of procedures for my headaches (spenopalatine ganglion blocks). Once when we asked the doctor to explain how it works, seeing as the SPG is not thought to be the center of cluster pain (rather the trigeminal nerve), he basically said "oh we don't know, we just know that sometimes it does. Basically, it's magic."
That's exactly who I want sticking a needle in my nose... :/ (I kid.)
Jun 21, '13There are a lot of different factors.
Sometimes it depends on what your neurologist and pcp say. A lot of patients have notes in their chart saying their pcp says to call them first. Then sometimes the patients say they've called their doctor and they said to come in. A phone call later and the pcp is mad because they did not receive a phone call. Sometimes it's a "we made an appointment but the office changed it." A call to the office and we find out that is not the case.
Sometimes it is a case of the patient has chronic pain and wants a narcotic. The ERs are not supposed to treat chronic pain. Usually it's a shot and they go home with instructions to contact whatever doctor is overseeing their chronic pain. However, for migraines it's the migraine cocktail and no narcotics for most doctors (some kind of pact between the hospitals within 50 minutes from here, some doctors don't follow this).
Another thing that will upset the doctors is if they found out that the patients have been switching up ERs. I think the most was about 50 times they were seen in an ER in a month. The doctor was furious.
Another issue is that some of the patients will be referred to the resident clinic to manage their pain and try to get in for a doctor. The patients will rarely follow up and instead keep on coming in to the ER. We have a patient that we see at least twice a month and that's when I work. She comes in with a friend. The ER literally down the street will give us a heads up when they discharge one because the other one shows up in about 20 minutes usually.
I would be more concerned if the doctor has taken the time to tell you need to talk to your pcp about this incidence instead of coming into the ER. That's usually a sign.
Jun 22, '13Quote from ClusterheadThere are treatments that work for certain things but we don't really have a solid explanation for them.You are so right that neurology in general basically is voodoo. I don't know if I've mentioned in my other posts here, but I've had a number of procedures for my headaches (spenopalatine ganglion blocks). Once when we asked the doctor to explain how it works, seeing as the SPG is not thought to be the center of cluster pain (rather the trigeminal nerve), he basically said "oh we don't know, we just know that sometimes it does. Basically, it's magic."
That's exactly who I want sticking a needle in my nose... :/ (I kid.)
Jun 25, '13Better get your pain under control on a non-narcotic pain med or treatment if you're serious about being a nurse. Practicing under the influence is a big no-no, even if you have a legit reason to be on such meds.