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.
