Clusterhead

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.)

Thanks 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.

Another general thanks to the responses! Esme, I wasn't asking for medical advice, sorry if that was confusing :) I just thought it might be helpful for anyone who was interested to see, especially those who work either on the floor in neuro or in the ED. As I've already said, it's not a common disorder and many people who land in the hospital find themselves misdiagnosed... not that an image of my eyes during an attack is going to fix that, I just thought it might be of interest to some. If that's not allowed for any reason then I do apologize. But no, I wasn't asking for any advice, I was just thinking maybe someone would find it of some educational value. PS: To those of you who sent me PMs, an extra thanks to you. Hopefully I'll be able to respond soon, but new members can't until they have 15 posts... that's why you haven't heard from me :/

Esme, you'll have to forgive me... I have no idea what you're talking about with "offering legal advice"??? I wasn't asking for any... not trying to be combative, I just really don't have the slightest idea which post or part of my post you're referring to. dudette, I will respond later on tonight, thank you for sending it!

This is a test post... was trying to upload an image of my eye during an attack for anyone who was interested and was having issues, so really just seeing if this goes through. EDIT: Okay, the post went through, but can someone help out here? I intended to upload an image of what my eye usually looks like at the onset of an attack that I had taken a few weeks ago for my doctor. I just figured if anyone were interested in seeing it (as images of such are not common online) then I'd be happy to share. I tried uploading it directly from my computer but it says I do not have permission to do such. Is this because of my small number of posts or....? Thanks!

Good thing being a drug seeker can't account for my beet-red left eye, the tearing, and swelling and drooping, or the fact that I can't breathe through my left nostril during an attack. I'm very sorry you were turned into a cynic somewhere along your career or your life, and I guess I'm lucky that most of the doctors I've run into are not. While I appreciate it deeply when nurses do not treat me as such, if they do it's not the end of the world because ultimately my treatment is not their call. Regardless, the difference between a good and bad nurse is the difference between a beneficial and a much-less-beneficial trip to the ER, as the added stress from skepticism being imposed on me usually only worsens things. Fortunately, you are so far the only one who has felt like that. Being a college student, I know a fair few drug (ab)users/addicts. It would seem that the extent to which I have gone to see doctors, have procedures, be on all of these other medications (etc.) is far too much work for someone looking for a fix. I guess you can't underestimate the desperation of addiction, but there are easier ways to get drugs. That's a fact. Despite what you may think, there is no way to feign the hopelessness, misery, and all of the other mental anguish that comes along with having such a debilitating pain condition. You can't feign the wasting that comes from barely being able to leave your bed to eat, or the brilliant white your skin turns from hardly seeing the sun. Whether or not they are strictly physical, the most debilitating of any CP condition takes its toll on the sufferer's body as well as their mind. And yes, Esme, I do totally get where you came to that average from. Yep, it has averaged out to once every 10-14 days. I was just explaining the usual pattern of my headaches. Once again I thank you all for the responses!

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?

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!

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.