Tuesday, August 29, 2006


When I first started exploring blogs, I was amazed by the amount of bloggers out there writing about pain. Pain that was difficult to diagnose. Pain that was/is difficult to treat. Pain that no one would believe -- except the blogosphere.

I read this interesting article from the Washington Post this morning talking about patients who have pain without a known cause -- meaning all testing that has been done is negative. The term somatization disorder is given to these individuals.

(Don't get me wrong, all the blogs that I read talking about pain do have a medical diagnosis and are receiving treatment. I want to be clear that I'm not labelling anyone that I read with the above term.)

I found the article interesting because it describes a treatment called "Cognitive Behavior Therapy," that teaches patients practical skills to help manage their symptoms.
The patients' ability to function, as measured by the number of stairs they could climb and the distance they could walk, was improved, and they reported being less troubled by 40 symptoms, including headaches, nausea, joint pain and difficulty swallowing.
The article goes on to say that those with this disorder may be more focused on their bodies than other people and have difficulty determining what is "normal" aches and pains - perhaps a "hypersensitive nervous system."
Arthur Barsky, a professor of psychiatry at Harvard Medical School and expert on medically unexplained symptoms, said he considers cognitive therapy essential.

"I focus on the way people think about their symptoms and try to decrease their hyper-vigilance," said Barsky, who has published studies of both somatization and hypochondria. He teaches patients to stop scrutinizing how fast their heart is beating, for example, to quit touching their neck to see if a lymph node is swollen, and to avoid searching the Internet for clues to their symptoms.
From my perspective, pain is a difficult thing to get a handle on. There has been a movement, especially in the medical community, to make an assessment of pain (during an office or hospital visit) as common as taking a blood pressure or obtaining other vital signs. I think this is a good thing, because I admit that docs probably don't address pain very well.

I definitely agree that there is a mind/body link. With that in mind, there has to be options for these individuals with somatization disorder. If cognitive therapy is proven to help is most cases, I'll definitely utilize this treatment option. I'll be closely watching the scientific/clinical studies as they further unfold.


NeoNurseChic said...

I don't think there's ever been any question that CBT is helpful for somatization disorder and in reality, helpful for pain problems that do have a definitive diagnosis. I don't like reading about somatization disorder because I fear that doctors will lump all of us who suffer from severe, intractible pain into that category. I have a hard enough time talking with my psychiatrist because sometimes I question him as to whether or not he thinks my pain is directly related to stress or mood, when I know for a fact that it is not. It's just something I think we have to be very careful around.

If you label someone with a somatization disorder when they truly have an organic pain cause, they may become hostile or refuse to accept treatment from you, the doctor, and certainly any psychologist or psychiatrist out there. It just has to be handled with extreme care.

I do believe, however, that anyone experiencing chronic pain has a tendency to have a hyperactive nervous system. I know mine is. I can't handle bright light, loud sounds, strong smells, and I tend to startle a lot more easily by smaller things than most people. Sometimes I feel like my nervous system is literally on fire. The hypersensitivity can be a part of both somatization disorder and organic pain problems.

I dunno...in reality, you can often not diagnose migraine as there is no test for it. Sure, I have white matter lesions on my brain, but still that is no definitive test. I think that's why these somatization disorder stories freak me out so much. How easy would it be for some doctor to say the symptoms of migraine or chronic headache are medically unexplained (even though they are quite obviously medically explained by those in the know...) just because there is no diagnostic test.

It would mean even worse treatment for those witha condition that already fight very strong stigma. And the thought of that is quite upsetting.....

Take care,
Carrie :)

Dr. A said...

I knew that I would be playing with fire when I made this post. I want to apologize to Carrie and anyone else if I offended you and/or sound insensitive.

People may have written me off by now. But, in case anyone is curious, I want to make my position on this as clear as I can. Pain is real. I know people don't make this up. I've seen it for myself first hand in my office.

The challenge for me is how do I appropriately treat this pain. I first must go down the road of medical testing. Most times, there is a diagnosis (ie - migraine headaches, rheumatoid arthritis, herniated disk, etc), which then can be treated. But, if the medical workup is negative, then other possibilities must be entertained.

Yes, somatization can be viewed as a label, but it's also a diagnosis. Yes, attention deficit disorder can be viewed as a label, but it's also a diagnosis. Yes, anxiety/depression can be viewed as labels, but they are also diagnoses. Why is this important? This is important because appropriate treatment can only occur with the right diagnosis.

Do docs inappropriately label/diagnose people with somatization? Sure, of course this happens. The last six paragraphs of the Washington Post article state how a person's symptoms were inadequately diagnosed. And, when the right diagnosis was made, it was too late.

I was not aware that cognitive behavior therapy was a consideration for pain. I plead ignorance on this, and this was the impetus for my post. When I find something interesting and/or learn something new, I like to share it with people.

If I'm off base and/or naive, please tell me. Again, I apologize if I offended anyone...

Sarebear said...

I had pain, muscle spasms & pain, after my c-section . . . I think it was set off by the epidural; when the morphine from the c-section wore off, I was taking the two lortabs per dose they gave me for the back pain, and not for anything else.

The anesthesiologist came up, and talked to me, and almost had me show him my back, but decided not. (I wondered if he didn't want to see it so he could plead ignorance in case of suit, or something . . .) I took a long time for them to get the epidural in. They had trouble with it . . .

Anyway. So my back hurt rather badly, but about two months after she was born, it got ALOT worse. It'd squeeze so hard around my back and sides and chest that I could hardly breathe, and it hurt like hell to inhale the little I could . . . my whole world was pain, and some days I could only get out of bed, BARELY, for bathroom functions. Good thing I lived around the corner from MIL and she took care of the baby some, both at my apt. and sometimes back to her house.

The Feb. after dd was born end of Oct, was the worst pain of my entire life. Worse than the pitocin induced labor that failed three separate times in one week, and yet hurt like hell. I even desperately took three two lortab doses over a 24 hour period, once, and it had gotten so bad t hat that didn't help . . . most days, though, was only two lortabs, with a few 4 lortabs in 24 hour days. But I was leery of getting hooked.

ANYWAY. After some advice to straighten up my posture (which, while good advice, was given condescendingly), that helped maybe 5%, but then stopped helping . . .they pretty much said they couldn't figure out what was wrong and wanted to send me up to the pain center at the University of Utah, because my doc couldn't prescribe anything stronger than lortab, which had quit working about 4-5 weeks before.

Anyway, I just suffered for the next 18 months or so. And, after that, it still came back from time to time.

I am really really afraid of this pain. And that I felt I might have started to be treated like I was wierd or faking or I don't know what. And afraid of epidurals now too, although two months after it, the pain moved higher up in the back, sides, and chest . . .

(NOT asking for dx or medical advice with all this, just relating my pain and not having a dx to explain it being frustrating, and all that, to a blogfriend, who posted on unexplained pain.)

Anyway. Twas frustrating, although I DID learn some stuff about myself, and in that horrid February, near the end of it, I "accepted" the pain, and endured it better. Came to a good psychological place, at least at the time . . .

Anyway. Pain sucks. I really admire those who keep living, despite the pain. When my whole world and every breath was fire, excruciating fire, and weeks with little sleep, I just didn't know how to go on. But then I did, I suppose.

Sorry to go on so long . . .

It wasn't my doc who was condescending about it tho, it was his PA. Nice to feel compassion from doc even when they don't know what is going on, instead of they decide YOU are the one who somehow isn't sufficient, that YOU are the one at fault for them not being able to dx. I like that my doc, and it seems you too, can accept that sometimes things aren't readily explainable, and that doesn't mean the patient is faking or at fault. Whee.


HP said...

CBT can be used across a wide range of medical conditions, including pain management, and also to deal with some of the psychological reactions to illness eg. anxiety.

However, I personally think the diagnostic label somatisation disorder is over-used. There are specific diagnostic criteria for the disorder and often patients I've seen sent to me with this label do not meet the criteria in any way.

Let's face it, medicine is not an exact science and often a root cause for pain and other symptoms cannot be found. Sometimes, with time, a known cause will eventually emerge.

For sure, some patients do have underlying psychological issues that are expressed in physical symptoms. In some cultures, it's more acceptable to have physical symptoms than psychological ones so you can see how this might happen.

I guess my worry is that this is a label that will be randomly applied to patients with any number of medically unexplained symptoms, simply because it feels better to come up with some kind of diagnosis.

HP said...

PS Dr. A. I've just read your comment. I think this is an important issue to raise and I thank you for that. You haven't been insensitive at all. It is a very sensitive topic.

I recently tried to start a discussion on a similar topic on my blog. I often get referred patients who have medically unexplained symptoms and they are often very resistant to psychological intervention, some of which results from the way in which they have been referred. I was hoping to get more discourse on this topic so that both psychologists and medical professionals would handle the process better.
Sorry for rambling on.

scalpel said...

It's interesting to me how different people quite differently respond to standardized painful stimuli.

A subcutaneous needlestick with a 27 gauge needle followed by an injection of 3cc of 1% lidocaine at a rate of Xcc/sec to create local anesthesia for an I&D of an abscess or suturing of a laceration is a standardized pain stimulus. Some patients, however, will scream, some will wince, some will just sit there quietly.

If the patient is frightened and emotionally agitated, or does not like/trust their physician, they tend to have higher objective levels of pain then if the patient is relaxed and confident in their physician.

It seems to me that this phenomenon can be extrapolated to many other areas of practice, such that some of what we do is just voodoo. Much of the success of medical intervention is getting the patient to trust you and believe that what you are doing for them will be effective.

The placebo effect rules, but it only works if the patient truly believes.

Dreaming again said...

Dr. A & Carrie ...

funny how tone of voice can make a difference ..and the lack there of on the internet can lead to a questioning of what was said.

I read Dr. A's post ... and understood he was excluding the Carrie's, the Cathy's, me, Moof's ..etc etc ...

I read Carrie's response not as a defense of "hey! what do you mean? This is what we're afraid of" But a further explination of what chronic pain patients go through.

Then Dr. A comes back defening himself ...
and apologizing. I may have read Carrie wrong. Although, I totally agreed with her. I'm TERRIFIED to call my PCP and ask for pain medication for the lupus ...when will I cross that line and get put into the 'drug seeking' category ...or 'it's all in your mind' group (was there after all when I was in the diagnosis phase ....)

It never happens, I ask for a few pain pills, and get several. I go see the doctor, and get offered pain meds. I get told by pcp, neuro, rheumy and ortho that I'm under utilizing my pain managment options ...

but the fear ... as Carrie's is soooooo strong ... when will it be just one call too many?

When will I get the psych/pain label?

(Dr. A ... you did a good job of not making me feel like you put us in that group ;) ...)

Nancy Evans said...

The weirdest psycosomatic disease I have ever seen was a lady who came to our clinic with "Parastitosis" a disease where a person imagines creepy crawlies coming out of various orfices such as ears, or the nose, etc. She was avery nice person otherwise. Go figure! I dont know what treatment was effective for her because I left for another job.

NeoNurseChic said...

Yeah - I agree with all of the above. All of it. I wasn't angry or upset really. I was further explaining.

To go off your comment now, let's look at the 3 pain conditions you mentioned. Herniated disk can be detected by radiologic film. Rheumatoid Arthritis has the rheumatoid factor and other visible tests and symptoms (well...in the majority of cases - I'm being treated for positive symptoms but seronegative at the moment...). Migraine? No test. No visible symptoms. Unless you count the puking, obvious photophobia, etc...

See why I get all in a tizzy when somatization disorder is mentioned? Migraine has NO TEST. You can't SEE it. The whole basis of migraine and headache medicine is in being able to trust the patient that they really are experiencing what they say they are. And I don't know any migraine or headache patients who don't fear the doctors who say "this can't happen." and other such insensitive remarks.

I got my headache out of the blue when I was 20 years old, sitting in a music theory class - 9am on 1/17/01. 8 days into it, when nothing the university doc gave me helped, they sent me home and my family doc sent me to the ER after I had a normal CT but again nothing he tried helped. So I go to the ER and they pump me full of demerol, then dilaudid, then toradol. After the toradol, my pain was a 5 so they were going to send me home and I started puking my brains out from all the meds. So the ER PA announced to the entire ER that I had a headache for attention. I still remember her name, and I know what date I was there. If I ever ran into this woman, I would have no problem telling her EXACTLY what impact she has had on my emotional status for the last 5+ years and what the headache really has been like.

So then the first neuro that saw me while I was in the hospital that time told me that since I didn't have a brain tumor, he couldn't do anything for me. He gave me a steroid dosepak and a 10 day supply of dilaudid, which my family doctor had me throw out. That was the first I heard of rebound and I knew the medicines they gave me were just doping me up and making me feel worse. So I did throw it out. I went back to school and was treated with various things my family doc tried to throw at it, but frankly, he was perplexed. I never knew that people could have headaches that lasted more than a few hours. I didn't know it at the time, but I'd suffered from episodic migraine about 1-2x/month since I was a kid, but it wasn't diagnosed because I never went to a doctor for headaches and never mentioned them to my pediatrician or family doc, attributing them always to stress. But the migraines for me were always short lived and responded to advil or motrin. So what was going on?

6 months after getting the headache, a new neuro at Jefferson put me in the hospital. I then was told by a resident about what some of the migraine patients were like there. I wasn't on the headache inpatient unit because I was admitted by a non-headache specialist neuro and they didn't have beds up there. I was on the cancer floor instead. I was in the hospital that time for 8 days and my neuro was baffled as to why I wasn't getting better. He had a consult with the headache center and they never do inpatient consults on the spot, but they did this time. That was the first time certain terms were thrown around like hemicrania continua and new daily persistent headache.

11 months to the day after getting the headache, I had my first appt at the headache center. I was diagnosed with new daily persistent headache, which for me, is essentially chronic migraine. The diagnostic criteria for NDPH are currently being revised by the IHS (by a team led by the director of Jefferson Headache Center) to more properly reflect the fact that it more closely resembles chronic migraine and not chronic tension-type headache, as the current diagnostic criteria reflect.

For those 11 months, I lived with severe anxiety every day that nobody was believing what I was going through. I'd never in my life experienced pain like this and that stupid ER PA had told me that it was all for attention. I was a freaking piano performance major - the last thing I needed was more attention! I went from doctor to doctor fearing that I was going to be told I was drug-seeking and that it was just all in my head. I was so nervous because I didn't know when the pain would end....and I was afraid that it might be here for good. I'm done being afraid of that because now it seems like it is here for good, but I don't fear it anymore because I've changed a LOT in the past 5+ years.

The best thing about the headache center was that they knew all about headaches and there was no doubt in anyone's mind that what I was experiencing was real. In their initial appt at Jefferson, they do have you meet with a psychiatrist that works in the office, only with headache patients. Many people fear this is so that they can say it's all in your head, but it's not. He meets with patients to find out if there are psychiatric comorbidities that may contribute to headache problems, but not to say, "You're nuts and this is why you have a headache." I cannot begin to say how many times I have sat in that waiting room and heard new patients grumble about having to see a psychiatrist because of that very fear. I've spoken to many of them personally to explain the fear away. Going to that center was the first time anyone validated that what I was experiencing was REAL and not all in my head or a symptom of stress or anxiety.

My family always knew I had a lot of stress in my life - for as long as I can remember. And I still get comments from family and friends where they say, "Well...maybe it's just stress." NO. YES stress makes it worse but stress is NOT the freaking cause - or even a trigger. Stress is an exacerbating factor for migraine sufferers but not a cause or trigger. This is so terribly misunderstood.

But one of the greatest things at the headache center was that I was not unique in having a headache that wouldn't go away. Turns out, lots of people have this. However, it is attributed to a lot of different things and NDPH is actually quite rare. A lot of people have transformed migraine, and the number one cause of TM is, unfortunately, rebound or analgesic overuse. People treat migraine with so much OTC meds (or prescribed pain meds like butalbital, phrenillin forte, etc) that the attacks actually become more frequent to the point where they become daily or near daily and then don't respond to meds the same way they always did. Some people do get hemicrania continua, chronic tension-type headache or chronic cluster headache. All of these things are real and while there is no test, there is never a question at the headache center and among headache specialists that these things are real.

But not so in the rest of the world. It's sad - but I would have to say that it's rare to run across a doctor that believes me when I state all of that. You know, for the longest time, once I went to the headache center, I was not allowed to take any rescue pain medications until really just the last year when I was given Ultracet to take as needed. And the true change came at New Year's last year. I was in the ER for severe back spasms due to the slight limp I have due to AVN (AVN is a pain condition that there is a diagnostic TEST for...it's more credible and believable to have AVN than to have migraine....). I left the ER still in a very severe degree of pain with the doc just pushing me out with a script for 3 days of a pain med and a referral to the Rothman Institute. I went to my psychiatrist later that week and told him what had happened. At that point, he asked a question that has changed my treatment ever since. He asked me if I felt my pain has ever been treated.

No. It had not been. I never asked for pain medication because the neurologists won't give it for fear of rebound. (Now called medication overuse headache.) This isn't true of all headache specialists, but it is the school of thought at our center that anybody who takes abortive or analgesic medications more than 2x/week is at risk for MOH. Other specialists (thank GOD) believe that not everyone will experience rebound like that... So anyways....after battling severe, untreated pain for well over 5 years, my neurologist finally caved and moved to manage the pain since none of the over 100 antiseizure medications, antihypertensive medications, antipsychotics, antidepressants, etc had touched it. It just so happens that NDPH is the most treatment-resistant of all headache disorders. So was my pain being treated? No.... It was so incredibly depressing. No wonder I needed therapy!

I'm sorry that's so long and that I gave the impression I was upset. I just want to stress that migraine has NO TEST. No headache condition has a test. See how easy it is for doctors and even psychiatrists/psychologists to misdiagnose it as "all in your head?" Not a headache sufferer I know hasn't faced that stigma at some point, and I know one hell of a lot of them. I have also been diagnosed with chronic cluster headache (that I've had since 11/03) and basilar migraine which is rare for me, but does seem to respond to lamictal, which I'm not on anymore actually.

THAT'S why I dont' like talk of somatiform disorders. There is a great degree of fear and anxiety about doctors not taking headaches seriously. You can test for most other pain conditions. But you have to TRUST someone with headache disorders. And unfortunately, there are many out there who abuse that and go to emergency rooms complaining of migraine in order to get drugs. Then ER docs are always on edge and treat every migraineur like they are a drug seeker, which has resulted in some GOD AWFUL treatment of headache sufferers across the board. This is why I mention every time I've ever had to go to the ER that I used to work in headache research and that I am a trainee member of the American Headache Society. I've rewritten curriculums on migraine and headache. I've also been hospitalized 7 times for migraine, even have been in the ICU and have been the guinea pig for a number of the center's treatments. This is the only reason anyone takes me seriously without giving me a lot of crap and telling me that I'm just there for drugs, which they aren't going to give me.

I'm sorry I came across as upset or angry - I'm truly not. Just had to say all this....


scalpel said...

Wow. Carrie, I hope you don't take any of this the wrong way, because I am just expressing some opinions and experiences of my own. Feel free to go off on me, but the fact is, we are probably going to disagree on a lot of facets of this topic, but I think it is healthy for both of us to discuss it without getting upset.

First off, I am not questioning the validity or motives of your doctors, and I would not try to diagnose you over the internet. I am not even referring to you specifically, because you are not alone...the issues you deal with are faced by thousands of similar patients (mostly women, for whatever reason). So anyway....

Od course a "headache center" is going to take every patient seriously. What reason, other than blatant drug-seeking, would they have for doing otherwise? And they have apparently eliminated the drug-seekers from the picture by not giving out "the good stuff." Brilliant! (This is in opposition to the "pain specialists" some of whom do nothing BUT give out narcotics, and therefore tend to attract primarily the drug seekers.)

If there is no diagnostic test for a condition, and no way to disprove that it is a "functional" disorder, then why the heck not treat every patient as being "real?" In reality, of course the symptoms are real. But if there is no specific diagnostic test for a condition, and no specific treatment that is consistently effective, and it tends to be worsened by stress, found in stressed-out patients, be associated with depression/anxiety and some other psychiatric comorbidities, responds in many cases at least partially to psychotherapy and often to psychiatric medications (I understand that much of this is post hoc reasoning, but who cares), then from a practical standpoint it might as well be a somatiform disorder.

I am fully willing to accept the fact that there are many conditions for which medical science simply has not found out how they work. I would love to see there be some specific pathophysiology found, some test for things like this, and some treatment that would be consistently effective. But it seems that there is a heavy psychiatric overlay to chronic headache and many chronic pain patients, and even if there were some way to reduce the hypersensitivity to stimuli that we seem to agree is often present in these patients, there still would probably be lots of "issues" to deal with. I am willing to accept the possibility of a physical cause, even though none has been found. Are you willing to accept the possibility that the primary cause might NOT be structural or "medical" but instead purely psychiatric? Probably not.

Personally, I don't think the distinction matters so much, because like the doctors at your headache clinic, I think there is nothing to be gained by not taking the problem seriously. From a pragmatic perspective, any symptom deserves to be treated whether there is a definitely identified cause or not, and I don't see the utility in ostracizing patients or making them feel bad about their condition.

Having said that, in my opinion it is exceedingly rare that any patient without a structural/medical cause of headache should ever be admitted to the hospital. In the absence of intractable vomiting or neurologic deficits, once life-threatening causes of pain have been ruled out there is really very little utility in admitting such patients and practically zero risk of adverse outcome if they are discharged.

After treating literally thousands of different headache patients, I have admitted almost none of them for migraine, and those rare handful were only at the request of (and to the service of) their established Neurologist, who really didn't need to admit them anyway because they were right back where they started afterwards, and nothing bad would have happened if they would have been sent home. Sometimes the workup of a new headache can justify an admission, but I disagree with the concept of admitting an established headache patient.

Then again, I have never been unable to make a patient more comfortable that has sought my care for their pain, as long as they are willing to put their faith and trust in my treatment, and if they don't have too many "allergies."

The number of medication "allergies" a patient lists directly corresponds to their level of psychiatric disturbance and to how psychologically invested they are in their condition, in the vast majority of cases.

But I've probably upset enough people with that tirade. Please don't anyone attack me for my beliefs, let's keep it civil. :)

Anonymous said...

Dr. A.

I Just wanted to let you know I have read this. I think I'm going to sit this one out though. I know what I have, why I have it and what can and cannot be done for it. I couldn't take it being torn apart and made into something it isn't over the internet.

I have so many mixed emotions on this topic that it might just be best to keep them to myself..

Great post and some really great comments.

Mother Jones RN said...

I think cognitive therapy and biofeedback are useful tools for helping people deal with chronic pain. I suffer with fibromyalgia, and both methods have helped me live with chronic pain. My problem has always been with doctors who automatically assume that I’m a nut because they don’t believe that fibromyalgia is “real,” or that I’m a junkie looking for narcotics. I take Motrin for pain. A psychiatrist I use to work with told me my pain was in my head. I told him he was full of shit and to mind his own business. Doc A, don't beat yourself up. I'm glad you brought up the subject.

There is a lot of research being done on pain and maybe one day we will have a better understand of why a lot of people hurt.

NeoNurseChic said...

Wow Scalpel. I can't even read through your entire post right now. You are obviously rather ignorant to topics in headache medicine. Did you know that in one year, more people die from migranous stroke than hand gun accidents? That the risk of having an intractible migraine lasting over 72 hours is to put someone at a much higher risk of migranous stroke?

You are obviously not at all familiar with headache literature and unfortunately talking like a typical ER doc who has no knowledge of the disorder, is fed up with headache patients, and just wants to push it away as all in your head.

There is quite a lot of evidence in the past few years that has emerged relating to various causes of migraine. Dr. Rami Bernstein has done a lot of research into the associations of migraine and allodynia, which leads to much of this overhypersensitivity of the nervous system, including the sensation that one's "hair hurts."

Cluster headaches are now believed to come from structural abnormalities in the hypothalamus which was found by a team of Italian specialists by doing functional PET scans on sufferers in this population. Currently, one of the more risky therapies being tried is Deep Brain Stimulation of the hypothalamus, and it has had some success in 2 different studies.

Hemiplegic migraine is so severe that a patient becomes paralyzed on one side of their body during this migraine attack. They cannot walk on their own. They lose the ability to speak clearly and often have trouble eating or drinking anything. Many of them have to be catheterized because they become incontinent.

In basilar migraine, the basilar artery is believed to go into spasm, which causes blood flow to various parts of the brain to be disrupted. In this case, patients suffer from visual changes, including complete temporary loss of vision, trouble thinking and remembering, severe vertigo, a severe bilateral headache, and other symptoms.

Many of these conditions have clear treatments that DO work for them. Perhaps you are unaware of that. Cluster headache can be acutely treated very quickly (thank god) by a number of things, including DHE, SQ imitrex, 100%O2 via nonrebreather mask for 10-20 minutes, being just a few of those things.

I really am not even going to discuss with you your concept that migraine and headaches should be viewed as purely psychiatric simply on the basis that there is no test or no one treatment that helps. To me, that statement is out of pure ignorance of the field.

Go to pubmed and look up articles under the author name of Silberstein SD or Burnstein R or Goadsby PJ...and the list could go on and on. At our university, there is a research lab dedicated to discovering causes and why certain things do and do not work for migraine. Because you cannot just crack open someone's brain, it is not as easy to diagnose as other things are, but that does NOT mean that it is not real. They are very close to discovering how the CGRP pathway relates to many aspects of migraine and cluster headache. This is done, in the early stages, by operating on the brains of rats. I've been there and seen it done myself when I used to work in headache research.

I suppose we will have to agree to disagree since I doubt you will take anything I say here with validity since afterall, you are an emergency physician with the obvious belief that all migraine and headache sufferers are nuts. But all I will say in conclusion is that you, sir, are part of the problem.

Sorry for the rant, but yes, you did just majorly piss me off.

NeoNurseChic said...

OK and for good measure, here are the "Reasons for headache hospitalization", taken from "Migraine and Other Headaches" by Young and Silberstein but also available to read in Wolff's Headache or any other major headache text....I just happened to like how it was listed in the first book and use that as part of my own teaching presentations:

*Failure of multiple aggressive outpatient interventions, including intravenous treatment (At our university, they do 3 days of outpatient infusions often before they will admit a patient)

*Failure to control overuse of pain medicines, despite aggressive outpatient plan and education

*Overuse of a large amount of barbiturates (Fiorinal or Esgic, etc) or opioids (codeine, oxycodone, or percocet, etc)

*Severe desperation, up to and including risk of suicide

*Impending loss of job or withdrawal from school unless migraine is rapidly controlled

(I suppose you will look at that list and either say a. junkie or b. nut case, but those are the criteria...I've always been admitted under the first reason...for anywhere from 8-17 days at length....the baseline of my headache always improves with hospitalization although sometimes it takes a long time and a lot of different treatments.)

Which leads me to move on to Inpatient Treatment... This part, I wrote myself based on the literature as part of one of 6 of the powerpoint presentations I have on this topic:
*A typical inpatient protocol often includes a combination of the following medications: reglan, droperidol, thorazine, benadryl, haldol, DHE, solumedrol, magnesium sulfate, depacon (valproic acid)
*Treatment by propofol infusion was tried but not found to be overly successful
*Current treatment for refractory headache inpatient can include a course of intravenous lidocaine (There is a study out of Australia that demonstrates the effectiveness of this. In June of 2003, I was the 2nd patient at our center to undergo this treatment and have now had it twice - it does help me, although both times I was on it for 10-12 days...This is currently the main thing that the neurologists move to at our center after 5-7 days of the conventional list from above)

In case you were wondering, I do have a few med allergies, but nothing to pain medicines or anything like that. I'm allergic to haldol (anaphylaxis - discovered while receiving it IV inpatient for headache), benadryl (believe it or not, also causes anaphylaxis for me - discovered while in the ICU for first days of lidocaine treatment and later rediscovered when cardiac stepdown night nurse did not read chart) and chlor-kon (no, I am not allergic to potassium....I'm allergic to some component of chlor-kon of which we are not quite sure, but the ER doc did mention it has cotton seed oil - it causes hives and anaphylaxis for me.)

Sorry to go off on this - as I said, I have 6 different power point presentations from which I can draw, but maybe I'll go about getting those published to my own blog for educational purposes. One of them is actually a 10 page, 20 slide presentation just on pathophysiology alone....

scalpel said...

As I said, if you read carefully and unemotionally, that there are certain indications to admit a headache patient, but the mortality rate of "migrainous strokes" really isn't pertinent to that decision. Sorry, I'm not losing any sleep worrying about those numbers.

Those with neurologic deficits (hemiplegic migraine) should probably be admitted (as I said) if their deficits are persistent or increasing in frequency.....just like any other TIAs. They are being admitted because of their neurologic deficit....not for pain control.

Patients who overdose on their meds might need to be admitted for treatment of their overdose, but not necessarily their headache. They probably shoudln't get another prescription for those meds either.

Patients with "impending job loss" or "withdrawal from school?" LOL, give me a break.

If anyone has a Neurologist willing to admit them and sit on them in the hospital for several days, I have no problem trying to help get that arranged for them and initiating whatever therapy their physician requests. If they don't have such a doctor or are uninsured, however, such an expectation is ridiculous. It just isn't going to happen.

Most "headache" patients can have their pain controlled in the ER (especially if they are not "allergic" to Reglan, Compazine, or Inapsine) without requiring admission, as I said, so I just never saw the point in admitting them. 2 weeks seems particularly excessive in any case. You can have an MI and a bypass and get out in a week. I can't believe that insurance companies would pay for that sort of treatment when the morbidity/mortality of not doing so would be negligible.

NeoNurseChic said...

Imagine that losing that job (which I could very well do, since you can get written up for missing work more than 4 times in 1 year....) or dropping out of school means that one more person goes on disability for something that might have been able to be aggressively treated and then controlled in the hospital and the whole loss might be prevented. One more student drops out of school that might have had a promising future, but cannot handle the pain on top of education. If I were to lose my job and go on disability, then I'd have to move back home, live off of mom and dad (since there ain't no disability check that can pay for an apartment on the Main Line), and sit at home incapacitated by pain day in and day out.

And, as I said - I didn't write the criteria. They are published in a number of textbooks and journals, however.

We could look at the cost of lost productivity on a national level for migraine and headache, but this is probably something you won't lose sleep over, either.

In my own case, if the ER could control it, then so could my neuro in an outpatient sense or through just ONE day of outpatient infusion. They do almost the same meds in outpatient infusion as they do via inpatient, but the difference is that lots of people have headaches that don't respond to just one treatment. 7 days of DHE is a lot different than one dose. I can do one dose at home - in fact, I could do 7 days of injecting my thigh with DHE twice a day...but it still doesn't cut it for me. And if I didn't get better in the hospital, then I wouldn't go.

And in reality, my admissions are short compared to what they can be. Our center used to only ever have admissions that were 3 days to 1 week, and apparently I was always on the lengthy end with the 2+ weeks, but now they have many people who have been there a month. The last time I was there, on day 17, I said I wanted to go. I was still getting cluster headaches twice a day but the overall baseline of my daily headache had decreased and I just felt that doing another round of depacon wasn't probably going to bust up that cluster pattern, so I left - to get back to school and work. Out at MHNI - Michigan Headpain and Neuro Institute - a 2 week stay is almost unheard of because most patients there stay for 4-6 weeks. Diamond clinic in Chicago works the same way...

It's a lot more in depth than what you say..... But I personally wouldn't hold it against you. ;) (Oh...give me credit for trying to be more lighthearted...) It is one of the reasons why I've always stood firm that migraine doesn't belong in the ER unless absolutely necessary.... I've only gone to the ER for headache a very few number of times, and only when I absolutely could not take it anymore and could not get it controlled at home AND could not wait until I could see my neuro the next day. I used to work in the ER - I know what it's like there. I've listened to various nurses and doctors say they wish these 'migraine patients would just go home...' and other such things. It's not an environment I'd ever choose to put myself in if I didn't have good reason...

It's impossible for a person working as a physician to be an expert in every topic out there, and unfortunately those with broader scopes have even less ability to dive in depth to certain topics. While migraine happens to be the number one reason that a person goes to the neurologist and the 7th most common reason for going to the ER or seeing a PCP, it doesn't mean that even many neuros will go to great lengths to learn about the entire bredth of the topic. Last summer, headache was finally made a subspeciality of neurology, and while that's been going on at some universities for a long time, it's great that it finally was accepted and acknowledged. I recently met the new headache fellow at our university - he came to us from Johns Hopkins. He's a very bright, good looking fellow that probably could have gone into anything, but he chose headache. Obviously, some people see it as something worth addressing with more than just a "psych diagnosis."

NeoNurseChic said...

Oh and it's not overDOSE...it's overUSE in the criteria. Of course an overdose might very well be an emergency, but overuse generally is not. The reason for why it is admittable under this criteria is not due to overdose, but because overuse leads to medication overuse headache - and a person's intractible headache will not improve without withdrawing the offending medication. And if it is a medication that a person has become dependent on and is unable to stop, in spite of everyone's best efforts, than it may take a hospitalization to work as a sort of "detox" - but not in an addiction sense. Most people in chronic pain want the cause of the pain to stop - not just the pain itself. Pain meds just mask the pain, but do not abort the underlying cause... Guess that's why whenever I've gone to the ER, I always said that I did not want pain meds at all...

Anonymous said...

I think everyone should consider that many people with chronic pain has found their only outlet for it through the internet and blogging.

Friends, families, co-workers and even some Drs. don't understand what chronic pain is all about. Or how it effects and takes over our day to day life.

We come to this community where we can post whatever we want, about our medical problems, and feel comfort in the fact that we aren't going to be put down, judged or made to feel inadequate. Even worse would be to think we have this haven, only to then have it wrecked by someone who may think we are nuts. These are the exact reasons I don't ask my Doc's for oral pain control. Instead, I sit my ass up all night in so much pain that I blog trying to forget about it...All because I don't want to say or do anything that might make my Doc. put something on a medical record that could damage my reputation. I get epidurals, cortizone injections, knee replacements, etc..But, I don't ask for pain meds.

Most people with chronic pain feel and hear how inadequate they are plenty in the "real" world. This is our escape.

Knowing that, then why is it necessary to take away the one option that we might have of working through these issues?

This is not about who is right and who is wrong. There is no right or wrong.

Pain, is pain to whomever is feeling it. It is not something that one can say..."Oh you don't hurt that bad"....Don't ever tell me how much I hurt! Walk a day on my legs and use my back and then talk to me about my pain level. Until then, just keep telling me to stop and buy a fifth of "Jack Daniles" to treat my pain with. I don't ask or expect anymore than that from you.

None of this was intended for you Dr. A....Absolutely none! I tried to not do this but I just got pissed.

Dr. A said...

I've been watching everyone's comments closely today. Thanks so much for the spirited debate. Something we can all agree on is that I'm not afraid to tackle controversial issues, eh?

If you haven't chimed in yet, why not? Let your voice be heard! At this point, some people would close their comments. Not me, type away!

I also wanted to let everyone know that I will be submitting this post for next week's Grand Rounds so that a more people can see the post and comment on it as well.

scalpel said...

There is a spectrum of every disease such that outlying difficult examples are always going to be refractory to standard treatment. In those cases, the most dedicated and knowledgable sub-subspecialists can immerse themselves into the challenge of those situations to their hearts' content. Just like at the end of a code, when all else has failed, you might as well try the pericardiocentesis, because you can do no wrong at that point. I'm sure they can come up with some outcome assessment to justify their existence (and their bills), although after 17 days of aggressive inpatient headache management the fact that you were still having pretty bad headaches seems like pretty flimsy evidence of success to me. That's why I chose acute care.

The bottom line is that you still missed a lot of work, spent a lot of money, and still had headaches. Shift workers like us have that sort of luxury, I suppose, but repeated lengthy absences from most other jobs just aren't reasonable.

Given your exceptional talents and cognitive abilities, maybe your brain is just overheating. ;) I hope you find some relief someday.

This was an interesting overview I read about admission criteria for headaches:

...discussions like this do prompt me to read occasionally.

NeoNurseChic said...

Cathy - I think perhaps we should talk on the phone at some point. I appreciate your comment here in many ways. I took my anger to the piano and banged through a few pieces and then, once the anger ended, worked on an a capella arrangement that I want to record sometime soon. It brought me some peace for awhile.

Dr. A - With all due respect, I feel like if this post goes to grand rounds, it will simply serve to invite more people here to talk about how their patients have this made up pain in their heads and how obnoxious, time consuming, nuts, and overdramatic these patients are. But, it's your choice to make. And if you've been following the comments here so closely today, then why haven't you emailed me back? *pout*

Scalpel - Good link. I've met all of those physicians in person and will probably see many of them again in 2 weeks as I head to England. The purpose of my trip was originally to go to the Migraine Trust international symposium. Now I've reduced that down to only going on the public day instead of as a member of the AHS. I'm staying with my bestest clusterbuddy the whole 9 days I'll be overseas.

In reality, for me, the hospital stays were all worth it. Granted, there were some unintended consequences of some of the things we did - such as the IV and PO steroids.... Ooops on that one as I got stage III bilateral Avascular Necrosis of the femoral condyles. (And it got to stage III because I, for one, sucked up the pain and also because even when I did voice it, nobody ever took it seriously...) Twice I ended up with anticholinergic toxicity from headache treatments. I got 2 DVTs in my left arm and then spent 4 months on coumadin. The list goes on with the negatives this brought to me. But I don't focus on that. Also, all of these stays took place while I was a full-time student. During the last stay, I also had a part-time job as a nurse extern, and the only reason I had that job (as I am the picture of the last person who should have had a job while in a 1-year second degree nursing program) was to pay medical bills. I am fortunate that my mom had personal choice blue cross through the school she works for, so our bills have been minimal in reality. During the 2 months I went on Aetna HMO, I went bankrupt and had to sell every share of stock I'd had since birth plus fill out forms for an extension to pay January rent while I waited for the 2nd half of my loan disbursement to come through. I use home O2, and I got a bill for $800 from the 2 months of having Aetna with no DME...even though I'd researched the DME and hadn't found anywhere that said it wasn't covered....oh well... So the hassle to me was enormous - if it hadn't been worth it, then why would I ever put myself through that?

There was one day when I got out of the hospital and had to play in a jury recognition recital 3 days after getting back. I'd had countless numbers of IVs in both arms, and my arms were all bruised up and swollen. Hardly the right way to go into a piano performance. My strength was next to nil, and I was performing last with Chopin's Scherzo in b-flat minor....about an 8.5 minute piece...25 pages long. From memory. When I'd been in the hospital for roughly 8 days. My performance kinda sucked, but I did the best I could... That started off the worst semester I ever had at Penn State, actually! But it happpens.

If the hospital stays hadn't been worth it, then I wouldn't have done it. Let's put it this way - the pain had gotten to the point where I couldn't go to class as it was. I was starting to drop my grades, and I had been valedictorian and a 4.0 student always. One semester, I had to drop 7 credits down to the bare minimum for being a full-time student. I had to give up my dream to go to med school because I knew I couldn't with how I was feeling. But each hospital stay made things more manageable for me so that I could go back to school and function once again....with less fluctuation of the pain and an overall reduced baseline of the pain. I'd go from a baseline of an 8-10 down to a 5. I can deal with that. I've never been pain free since the day I got it - all I ask for is a little bit of control there in reducing the pain. And to me, to be able to achieve that, has been worth it - financially and academically as I have been able to increase my productivity and overall miss fewer days.

And now, I'm done with this for now. I'm going to go out to Borders for awhile and then go food shopping and perhaps do some laundry and piano playing later. I just need to get my mind off all this, so I'm getting out of the apt for awhile. Don't talk about me too much while I'm gone.. LMAO As for an overheated brain - that might be an understatement...I've asked to get the hard drive replaced several times, to no avail. The neurosurgeon did say he'd keep it in mind. ;)


scalpel said...

Someday maybe future humans will consider 6 week hospital stays, psychiatric consultations, and antipsychotic medications for headaches as obsolete as "modern medicine" considers the concept of trephination.

NeoNurseChic said...

Well unlike trephination - it does have a point. ;) I hope it only becomes obsolete because there is a better, faster cure. There are some really awesome pics of trephination in the "Atlas of Headache" by M. Alan Stiles et al. I never did get my copy from him, but I remember the pictures - they were really something.... (Well then again, I guess they believed that trephination had a point, when it was in fashion...It's all about perspective...) I'd have loved to drill a hole through my right parietal bone and release the pressure somedays....find the offending vessel and rip it out. No takers on that one, either. ;)

scalpel said...

If the trephinations hadn't been worth it, then she wouldn't have done it. Let's put it this way - the pain had gotten to the point where she couldn't gather berries or carry the heavy buckets of water as it was.

But each trephination session made things more manageable so that she could cook dinner for the family and function once again....with less fluctuation of the pain and an overall reduced baseline of the pain. She was never been pain free since the day she got it - all she asked for was a little bit of control there in reducing the pain. And to her, to be able to achieve that, has been worth it - despite the gaping hole in her head.

That trephinating surgeon was really up to date all of the latest research from the Neolithic era!

Sorry, but I'm a big believer in perspective, and humor :)

NeoNurseChic said...

Now you just have me shaking my head with my hand at my forehead...but at least I'm smiling. What a day.... I don't think we'll ever look back on modern day headache treatment with quite the same horror as we view trephination, but maybe it is quite horrifying that if someone goes to MHNI, from what I've been told (by several different people who don't know each other) if they aren't "cured" after 6 weeks, they get sent out of there with about 5 psychiatric diagnoses and told to continue with therapy and that their headache is hopeless. Hmmm...that sounds familiar from somewhere. Nawwww.....

Some days, you just can't win. You know, after I walked out of the apartment to go to Borders earlier, I had all of this on my mind, and what should be sitting on my car but a $10 parking ticket. 40 feet in front of the car, behind a tree, was a sign saying 2-hr parking. Hahaha..... Not my day apparently!

Perspective and humor are pretty much the only way to survive... ;)

Anonymous said...

I've found that once I cut out the multiple pots of coffee consumption a day, that piercing pain behind my right eye cleared right up.

Anonymous said...

Hi Doc A,

For one who has just been through a major PAINful experience due to an ectopic all I can say is pay attention to your pain. I guess when you've had your fair share of it, your tolerance grows. Pls visit my blog to read about this amazing faith story. This is Cathy from Midlife Mysteries at wwww.nancydrewandme.blogspot.com

Anonymous said...

I have fibromyalgia, Raynaud's syndrome, and a few other things probably but I don't have a clinical diagnosis yet.

There definitely is a mind-body link, but I think too often people look at people in chronic pain and want us to "think ourselves out of it". And even CBT won't do that. CBT does reduce the number of times I sit on the kitchen floor and weep because I can't manage to lift my cast iron skillet today...it shows me better ways to manage the frustration and anger, lets me take a deep breath and NOT flake out all the time, which helps in the whole interpersonal relationship area.

But I still hurt, still wind up sitting in a hot bath with spasming muscles at three am weeping silently with pain so I don't wake my husband. (No, I don't have anything for it. I can't walk into a doctor and ask for a muscle relaxant, a narcotic pain reliever, and a stimulant, when I "look so healthy".)

Anonymous said...

after reading everything on this site I don't feel so alone. I was just hospitalized this past weekend for my chronic migraine because it had gotten to the point where I couldn't do anything. right now I am inbetween doctors and the doctor I saw I didn't know. I found out that he really didn't believe the faact that i had so much pain but admitted me anyway. When I was admitted to the hospital and asked for something for nausea, I was told that there was nothing ordered and that the nurse wasn't going to wake up the doctor at 3am just to get something for nausea. The rest of the hospitalization was like this and then i got complications from one of the meds and I still didn't get the help i needed. I feel that some people really know how to look and see the pain even if you don't show it physically. other people just want to go and see someone that actually shows how they are feeling. When i try to explain to someone how having headaches has changed my life, I just tell them what I was able to do when i was feeling better(not having pain at 9/10) and what i can do know. I also try to explain that even though I look fine I really don't feel fine. If they want to believe me that is fine, if they don't believe me then that is up to them also.

Anonymous said...

Hi everyone

I have been reading the past comments and blogs and would like to add to them. From a Health Professsional and Patient point of view!

I am a health professional - indeed I am no longer a clinician but a senior manager -

4 months I developed a severe headache out of the blue...which was a shock for me as I do not suffer headaches usually and not one for taking meds....I too went to the ER after 6 days of an unrelenting HA - the ER staff were rude, impolite and impatient! Got the ' oh just a headache' atttitude - was sent home!

I have since not returned to work - am off sick..and the Headache is till with me! Been diagnosed with NDPH-- new daily persistent headache - which is the most retractable headache to treat and can last years - it is a recognised syndrome...it has certain characteristsics that make it so..

I have pain all the time...and am learning to deal and live with it-- without the aid of meds....

I believe that ther eis some pathophysiology causing my HA! and its not in my head - caused by some mental health problem! Whether its viral relatedor that my CNS is over sensitive to some trigger! or chemical imbalance or whatever!

Yes I agree anxiety can manifest in physical symptoms - but what came first the chicken or the egg!

SCALPEL---- you are a disgarce to the MEd prof! and neuro in particular!

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