A patient wants to know your thoughts on frequent fliers...

[Clusterhead]

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 thinking more and more that being an RN would be a particularly suitable and fulfilling career for me.

I am a 22 year old male who has had cluster headaches for the past 3 years. For those of you who may be unfamiliar with the condition, it is an exceedingly painful neurological disorder primarily characterized by extreme pain on one side of the head which is also sometimes accompanied by tearing/drooping/reddening of the eye and/or congestion or rhinorrea (all on the same side as the pain). Attacks generally occur multiple times a day, usually anywhere from 1-2 to >10. The intensity of the pain is markedly greater than that of most other conditions, both neurological and otherwise. The majority of women sufferers say the pain is much worse than childbirth, and cluster headaches are thought to be among the most painful conditions known to medical science. Usually if I have a headache bad enough to require emergency treatment, it makes me so agitated that I have to pace around the waiting room. I have banged my head against the walls and pulled out chunks of my own hair, and this is mild compared to what some other sufferers do to themselves during an attack. (That said, it's not a competition. All chronic pain conditions are hard to live with. I was merely explaining the degree of pain I usually find myself in.)

Most cluster patients are episodic, and experience their headaches in "clusters" of 8-10 weeks and afterwards may have weeks, months, or even years of remission. Some, like me, are chronic, and get no break. I have had at least one headache (generally five) every day since they began, with the exception of one brief and partial remission.

I have been in the ER an obscene amount of times since my headaches started. Last year, I was there 26 times. I suppose when I consider the sheer number number of attacks I have every year (I figured it out once... I get almost 2,000 distinct headaches A YEAR), it doesn't seem so bad. But compared to normal people, that's insane. I know it, believe me, I do. To make matters worse for my anxiety over having to go so often, I receive dilaudid every time (plus toradol) and without any physical evidence of my pain, naturally I am terrified of being labeled a drug seeker.

Here's the thing, though. The ER is by no means my primary care facility. Given the severity of my condition, I have literally been all over the country trying to find a solution. Cleveland Clinic, Thomas Jefferson, neurologists and headache specialists in NYC near home. I have been on 40 [non-narcotic] preventative medications that have all had varying degrees of failure, and about as many abortives. I have a home oxygen tank to try and abort attacks, and I've had procedures done, mostly glorified nerve blocks. I have done a few inpatient stints for various treatments done through IVs over a period of a few days (intravenous dihydroergotamine, for those interested). Really and truly everything. Furthermore, I have a note from my primary headache doctor (who is different than my actual PCP) that says "[This patient] is under my care for the treatment of chronic cluster headache. He has [these medications] at home but occasionally requires ED treatment. [These medications in these amounts] usually abort an attack." Most doctors follow this without much question, especially with my extensive chart they can easily access. I also hope that it goes without saying that I follow all discharge instructions, although usually I'm not really given any besides "go and see your doctor."

I guess I didn't really have to tell you all of that to ask my question, but I think much like how I feel when I land in the ER AGAIN, I often speak in self-defense. Which is probably wholly unnecessary. But really, how can I tell you that I've been in the ER about 12 times since 2013 started without explaining how a person could need that kind of treatment so often?

I would like to clarify that with few exceptions, I have been treated with nothing but kindness, sympathy, and respect from all staff. In fact, the only issues I've ever had were with doctors, and that was only one or two times of so many. In turn, I like to think that I treat the ER staff with the same kindness they treat me. (I can be a bit snippy when I'm still in that amount of pain, but I'm never rude, just agitated as I mentioned above.) I have never been labeled a drug-seeker, to the best of my knowledge. But I can't help but wonder what everyone really thinks when I show up again. Sometimes I worry that I'll stop being treated in the ER altogether.

So please, tell me, what do you think when you come across a patient like me? I really want to know. I understand my circumstances might cause some to be skeptical or flat-out disbelieving, and I always want to make sure I'm doing anything and everything I can to help minimize as much of that as possible. I guess the secondary question is, what else can I be doing?

As an aside, I recently went into pain management with an incredibly compassionate and knowledgeable doctor who is the best I've seen in a very long time. I'm hopeful that this will cut down, if not eliminate, the ER visits.

For those of you who read all of that, I commend and thank you.

[Esme12, ASN, BSN, RN]

I am so sorry you are plagued by these headaches. Although this is a site for nurses it was very helpful to have an explanation of your condition. Just like anything else in this world there are good and bad nurses and doctors. Nurses/doctor's are human as well and (not that this is an excuse) we have bad days as well that we have difficulty separating our personal life from our professional life.

Unfortunately we deal with the general public and unfortunately many people use the ED for their primary care....as well as their next narcotic "fix" so to speak. This is a sad, but very real, phenomenon in emergency medicine. I have to say that if you do need some other intervention for if you require emergency intervention 12 times since the beginning of this year (that is about every 10 days) you need different intervention/treatment. I am glad you are being evaluated by a pain clinic for it is clear you need some intervention.

Nurses in the ED are very wary of agitation especially if the patient is banging their head on a wall.....this is unsettling to the staff for it is common for physical aggression/violence will soon follow.....ED nurses must be on the defensive at all times for their own personal protection. Remember we deal with the general public and many many patients are not nice people.

I am sorry if you feel you were treated less than appropriate or lacking in understanding and patience. It should NOT be the staffs position to judge but to treat and give releif.

I hope you get some better relief. :)

[Clusterhead]

Thanks for the response! I think I should probably clarify a few things, just to be as clear as possible.

Yes, I am very aware of certain members of the general public (i.e. drug [ab]users/addicts) using the ER just for a fix. This is exactly why I'm so concerned about how I'm really looked at in an ED setting. This is also the reason I have the letter from my doctor on his letterhead.

I have had, continue to have, and will always have access to really the best medical care I can possibly have with regards to the headaches. I am incredibly lucky in that respect. The simple problem is that so far, none of the "typical" headache meds work. (This is why I've also had some procedures and blocks done, since it seems perhaps medications will ultimately not be the solution.) Of course you are right that with the frequency I obviously need some better intervention, but it is not for lack of trying on my part or the part of about a dozen (very qualified) doctors, PAs, and RNPs. As I said, though, hopefully being in pain management now will make a big difference. I have been on low doses of IR oxycodone for quite some time and the new doc added a small dose of ER morphine which has already made a big difference in how I'm feeling I am also on a few other more typical headache medications, namely verapamil and zonisamide for prevention and imitrex and the home O2 for abortive measures.

I understand why agitation can be a red flag. However, I was merely explaining how bad the pain can get and should have clarified that in the ED, the worst I ever do is have to stand and pace some or rock back and forth. If I'm to be honest, I get very embarrassed when anyone other than my parents or partner see me in that kind of state (including medical professionals, who often just don't understand what it's like to be in that kind of pain through no fault of their own) so I really try and reel it in as best as I can in any public place. I have also never, ever been violent to anyone other than my own damn self but of course no one could know that just by seeing me in such an agitated state.

This is simply a matter of semantics, but the pattern and natural rise and ebb of my headaches usually means that I'm in the ER about every 3-4 weeks and not every 10 days; the reason the number of visits is so high is because frequently I have to go more than once in a period of a few days, and then things calm down again some. Not that it really matters because the number of visits remains the same... just kind of explaining further. Of course, no ER doctor would change my medicine regime for my chronic condition (nor would I expect or even want them to!) but with absolutely no change in my pain level other than the one attack treated and no change in what I had at home to cope, there were many times I'd have to return in less than 24 hours. Fortunately, now I DO have a little more at home to help control them.

I have also very rarely been treated with anything less than the utmost respect and patience, so it's really not an issue in that regard... at least up until this point. Just curious about how someone like me might be received, and your answer certainly shed some insight. Thank you again!

[drowningdaily]

Wow. Never been an ER nurse, so I can't speak to that part of your post. However, as a chronic migraine sufferer I am not sure how you would do in nursing school. My headaches are nowhere near what you described, and at times, it was a struggle. The stress, crazy schedule and sleep deprivation where killer and I had a definite increase in number and severity of migraines.

Nursing school is very expensive and intense. I am not saying you could not do it. Your experiences as a patient would make you a great patient advocate and a compassionate nurse. Good luck with your treatment and your education if you choose to pursue nursing.

[Clusterhead]

Believe me-- that is a concern. I gave up my hopes of obtaining a PhD in Anthropology long ago as a result of my headaches, knowing that I could never complete the program. I was a music major once, too, but had to stop playing entirely because the vibrations from my brass mouthpiece (rather than the noise) were triggering attacks.

Without straying too far into "woe is me" complaining, up until this point (since the headaches began obviously) I have been unable to do just about anything, let alone go to nursing school. I have no life right now. That's just a fact. I should be finishing my BA this year but have been on medical leave for almost two. You are absolutely, positively, correct that I would not do well in nursing school... right now.

I simply meant it's something I'm thinking about for the future. Despite the struggle, I remain optimistic that we will find a solution eventually. I never stop searching, and I am really fortunate and grateful to have access to such good care even if so far it's been unsuccessful. The one upside to my headaches being so bad is that it's forced us to be very aggressive in my treatment. I think once we find an answer... a real answer... it will stick. If it doesn't, I am glad to know that I have something to fall back on in a pinch (that is, the opioid therapy) even if it's really not a good solution in the long-run.

All of my life plans, my goals, my dreams are made with an asterisk. Nursing school *to be considered, when healthy. I have to believe I'll have a life after the clusters, and at the moment, what else can I do right?

[drowningdaily]

All of my life plans, my goals, my dreams are made with an asterisk. Nursing school *to be considered, when healthy. I have to believe I'll have a life after the clusters, and at the moment, what else can I do right?

Keep dreaming and setting goals. You are very determined, and once you solve this problem, I believe the sky will be the limit in what you can accomplish!

[Clementia]

I've been an ortho nurse for seven years, and we see a lot of frequent fliers that ED gives us. I have always noticed a marked difference between the folks like you, who are there because they really need to be there, and the folks who are trying to score a little more narcotic. I don't think you would come across as a drug seeker at all, especially since you have a history of cluster headaches and a letter from your doctor.

I'm sorry to hear that things are so difficult for you right now. I hope the pain clinic is able to alleviate the headaches enough so that you can have a life again.

[cdscmb]

If it is like you said and you are respectful and non-demanding when you go to the ER, they're probably used to seeing you and the nursing staff likely won't give it a second thought. In fact, you'll probably be one of their favorite patients if you stay quietly in your room and all they have to do is draw some labs, dose you with pain meds and send you home/admit for observation. Some may be a little more righteous than others, but the majority just want to get through their day without too much craziness. The docs may be a little wary (they always are when it comes to pain meds).

[jadelpn, LPN, EMT-B]

I am hopeful that pain management works for you. Sounds overwhelmingly painful.

I would never worry about feeling that the ER staff is saying things about you. Conditions such as yours are intermitently chronic, and most are somewhat learned in acute onset of symptoms.

The wait is perhaps the worst for you seeking treatment in an ER setting.

I would maybe ask your new pain managment MD if there is an outpatient infusion clinic that you may be able to get treatment at when you are unable to abort your headaches.

Otherwise, most ER nurses are learned in the acute onset of pain.

Good luck with your new MD.

[Poochiewoochie]

To the OP-I had two herniated discs in 2011 that caused excruciating pain. I had no clue as to what was causing my severe neck pain-at the time the ER diagnosed it as a neck sprain. I do have a PCP but they aren't always that easy to get into so I made several visits to the ER before realizing there was not much they could do for me except refer me to their so-called specialist who in turn said I wasn't a candidate for surgery so he referred me to a pain doctor who started prescribing MS Contin for my pain. This went on for about 7 months before I went to the other hospital system in my city and they referred me to their on call Neurosurgeon. I had surgery the following month.

My point to this is that doctors are so quick to prescribe narcotic pain relievers so who is to blame for patients becoming so called "frequent fliers". Instead of medical professionals looking their noses down on patients like this maybe it's time the profession takes a good look at themselves and start to take most of the blame for why patients have become addicted to these drugs. Luckily I never became addicted to the drugs-they never did help. The experts say you need to keep ahead of the pain in order to control it but that's not possible when the pain is already horrible when you start the meds.

I also would like to say that there are some people(like you) who need the pain medication. You might have received some positive comments here but I have read here and on other sites comments from nurses and other medical professionals that they think chronic migraine sufferers fall into the drug seeking catagory. They also say that if you present to the ER with you MRI you are one. When I had my problems I was told to carry my MRI with me whenever I had to go to the ER. There are too many people in the field who let their own personal beliefs control how they act towards a person in pain. Yes, there are those who are actually drug seeking but please don't lump all pain patients together as being one.

I hope you do decide to become a nurse. They need more people like you who have empathy and can sympathize with someone in pain because of your medical condition. You won't be quick to judge and label someone as a drug seeker.

[Esme12, ASN, BSN, RN]

Thanks for the response! I think I should probably clarify a few things, just to be as clear as possible.

I understand why agitation can be a red flag. However, I was merely explaining how bad the pain can get and should have clarified that in the ED, the worst I ever do is have to stand and pace some or rock back and forth. If I'm to be honest, I get very embarrassed when anyone other than my parents or partner see me in that kind of state (including medical professionals, who often just don't understand what it's like to be in that kind of pain through no fault of their own) so I really try and reel it in as best as I can in any public place. I have also never, ever been violent to anyone other than my own damn self but of course no one could know that just by seeing me in such an agitated state.

This is simply a matter of semantics, but the pattern and natural rise and ebb of my headaches usually means that I'm in the ER about every 3-4 weeks and not every 10 days; the reason the number of visits is so high is because frequently I have to go more than once in a period of a few days, and then things calm down again some. Not that it really matters because the number of visits remains the same... just kind of explaining further. Of course, no ER doctor would change my medicine regime for my chronic condition (nor would I expect or even want them to!) but with absolutely no change in my pain level other than the one attack treated and no change in what I had at home to cope, there were many times I'd have to return in less than 24 hours. Fortunately, now I DO have a little more at home to help control them.

I have also very rarely been treated with anything less than the utmost respect and patience, so it's really not an issue in that regard... at least up until this point. Just curious about how someone like me might be received, and your answer certainly shed some insight. Thank you again!

As a sufferer of a chronic disease and an ED nurse I feel your pain.....you stated that you've

been in the ER about 12 times since 2013 started

so that means in 4 1/2 months you have been to the ED 12 times....that would be approximately 2 1/2 to 3 times per month about every 10 to 14 days. Which is why I said it was good you were going to pain specialists to get some relief and better control.

In any situation you will find good and bad people working there...that is a sad reality. Unfortunately the government has decided to step in and investigate MD's and facilities for their narcotic usage and high frequency users and prescribers....which makes MD/NP's cautious and uncomfortable.

Welcome to big brother in medicine.

[imintrouble, BSN, RN]

I'm going to get so hammered here, but an honest question deserves an honest answer.

If I saw the same pt, present with the same symptoms every 10 days, I would think "seeker". If I saw that patient pace, rock, and otherwise show s/s agitation I would think "withdrawal". Somebody needs a fix.

As to all the information the OP has supplied to explain his symtoms, that could be an internet hunt to convince ER personnell that he really has what he says he has. I have seen ALL of the above in my lengthy nursing career.

Cynics are not born, they are created. My first response might not be the correct one, but I consider my cynicism to be a hazard of the job.