Headache 360- The Diagnosis Problem: Why Headache Labels Miss the Cause
Host: Dr. Adam Lowenstein, MD, FACS
Episode Duration: 22 Minutes
Published:April 26, 2024
Category: Migraine | Headache Diagnosis | Nerve Blocks | Peripheral Neuralgia
Episode Summary
Patients constantly ask Dr. Lowenstein whether he treats their particular diagnosis — migraine, cluster, new daily persistent headache, one of dozens of labels. In this episode he argues the question itself is the problem. Headache diagnoses are largely subjective descriptions of how pain behaves, and they say little about what is causing it. Holding up the 28-page International Classification of Headache Disorders, he makes the case that most common headaches trace back to the same root — peripheral neuralgia, irritation of a sensory nerve in the head or neck — and that a diagnostic nerve block, not the label, is what reveals whether that’s true for a given patient.
Key Highlights
- Why the question “do you treat diagnosis X?” is the wrong question
- The International Classification of Headache Disorders — 28 pages and dozens of separate migraine labels alone
- How headache diagnoses are made: subjective descriptions of timing, frequency, and symptoms
- Why a different diagnosis does not mean a different cause
- The exceptions that genuinely do point to a cause — stroke and brain infarct — and belong in an ER, not his office
- Reframing the whole field around cause instead of label: peripheral neuralgia
- How the brain’s variable processing of one nerve signal produces many different “diagnoses”
- The nerves Dr. Lowenstein treats: greater and lesser occipital, auriculotemporal, zygomaticotemporal, supraorbital, supratrochlear
- Why the nerve block is the diagnostic tool that cuts through the confusion
- One patient, four separate diagnoses from the same neurologist — and a single occipital nerve behind all of them
- Why patients are often attached to their diagnosis, and why that attachment can get in the way
- Diagnostic versus therapeutic blocks, and what lidocaine’s 30–40 minutes of numbness actually tells you
- Why a steroid block that flares the headache is still a positive sign that the nerve is the culprit
- What a negative block means — and the honesty that not everyone can be helped
Who Should Listen?
This episode is for:
- Patients juggling multiple or conflicting headache diagnoses
- Anyone told they are “treatment-resistant” and out of options
- People trying to understand whether surgery could apply to their specific label
- Patients who have been offered, or are curious about, a diagnostic nerve block
- Anyone confused by the gap between a diagnosis and its cause
Key Topics Covered
|
Topic |
Discussion |
|
The Diagnosis Problem |
Why subjective labels don’t identify what’s causing the pain |
|
The Classification System |
28 pages of headache diagnoses — and what they leave out |
|
Cause Over Label |
Peripheral neuralgia as the common root of many headaches |
|
How Symptoms Vary |
The brain’s processing turns one nerve signal into many presentations |
|
The Nerves Treated |
Occipital, auriculotemporal, zygomaticotemporal, supraorbital, supratrochlear |
|
Nerve Blocks |
Diagnostic vs. therapeutic; what numbness and relief reveal |
|
The Steroid Block Paradox |
Why a temporary flare still supports a nerve source |
|
Setting Expectations |
When a block is negative and surgery isn’t the answer |
Featured Quote
“If I give you a nerve block in the area that hurts, and the pain goes away, the diagnosis doesn’t matter. What matters is that it is being caused by irritation of that nerve.”
— Dr. Adam Lowenstein
Transcript
00:02 — Announcer:
Welcome to the Headache 360 Podcast, a place to listen and learn about the diagnosis and treatment of chronic headache and migraine pain, because information can be the best medicine.
00:19 — Dr. Lowenstein:
Hi, it’s Dr. Adam Lowenstein. It’s been a while since a lot of you have seen me. I’m probably a little older-looking; there’s a little more gray here and there. But I have been getting complaints, and I really don’t like complaints.
00:44 — Dr. Lowenstein:
People have been complaining that I haven’t updated the podcast in a long time and haven’t posted many videos recently. Honestly, all of those things are true, and I’m sorry. Between being busy here at work…
01:07 — Dr. Lowenstein:
…and having a nine-year-old and a 12-year-old with soccer, volleyball, lacrosse, and all kinds of things, I’ve been poor at finding the time to update things. I’m going to try to add some podcast episodes…
01:31 — Dr. Lowenstein:
…and combine them with videos by making extended videos and shorter podcasts. Today, I’m going to talk about some diagnosis issues, and we’ll also put this on our YouTube channel.
01:52 — Dr. Lowenstein:
We’ll add this to our podcast. It may not be the 45-minute or hour-long podcast we’re used to, but one of the big things I’m hearing is from patients who call or email me and say…
02:15 — Dr. Lowenstein:
…’I’ve got this diagnosis or that diagnosis. Do you treat people with these various diagnoses?’ Honestly, I understand why these diagnoses exist, and yet they drive me crazy. We have to realize that, from a neurologic standpoint…
02:37 — Dr. Lowenstein:
…and unfortunately from an insurance standpoint, there are so many different types of headache diagnoses. In fact, I downloaded this here. Video viewers will see it, but podcast listeners will have to…
02:59 — Dr. Lowenstein:
…trust me. It’s a description—let’s see if I can get it in focus, but maybe not—of the International Classification of Headache Disorders, Third Edition. It is 28 pages long. As you might be able to see, I started to go through all of…
03:24 — Dr. Lowenstein:
…these diagnoses, using a highlighter to indicate the diagnoses we can help. You can see that it got boring and kind of crazy, so eventually I just said, ‘Enough.’
03:46 — Dr. Lowenstein:
I’m not going to do this anymore. The point is that when people diagnose headaches, there are migraine without aura, migraine with aura, migraine with typical aura, typical aura with headache, migraine with brainstem aura…
04:08 — Dr. Lowenstein:
…chronic migraine, status migrainosus, probable migraine, and probable migraine without aura. All of these are different diagnoses. There are infrequent episodic headaches, frequent episodic probable cluster headaches, episodic cluster headaches…
04:30 — Dr. Lowenstein:
…and chronic cluster headaches. The point is that your headache diagnosis is more of a subjective situation…
04:50 — Dr. Lowenstein:
…where your provider—usually a neurologist and sometimes a primary care doctor—asks questions about the nature of your headaches: how often they happen, what happens during a headache, whether you get nauseated, whether they happen every day or three times a week, and how long you’ve had them…
05:12 — Dr. Lowenstein:
…and so on. When we look at these diagnoses from a subjective standpoint, they say nothing about what is causing the headache. A different diagnosis, such as new daily persistent headache, is not necessarily a different…
05:37 — Dr. Lowenstein:
…cause. It is not necessarily from a different process than a chronic problem that isn’t new. It is simply the nature of the headache that creates the diagnosis. This is not true all the time. Some headaches are diagnosed based on brain infarcts or strokes, for example, and those do…
06:00 — Dr. Lowenstein:
…correspond to a specific cause. Headaches produced by stroke are not something I can work with. But most common headaches—migraine, tension headache, new daily persistent headache, status migrainosus, and…
06:29 — Dr. Lowenstein:
…a whole group of trigeminal headaches and primary exercise headaches—are different. Please excuse me; I’m taking the opportunity to do this while lots of other things are going on in my office. You may hear people walking by. But if I’m going to put things on my podcast and YouTube channels…
06:54 — Dr. Lowenstein:
…I need to be opportunistic, and I just have a little time right now. Give me one second. I’m going to close this a little more. Anyway, I’m back. The point is that when we’re looking at…
07:16 — Dr. Lowenstein:
…headaches, rather than looking at the diagnosis, what is important in our world of fixing these headaches is looking at the cause. The cause of many of these headaches is actually peripheral neuralgia.
07:36 — Dr. Lowenstein:
As many of you hopefully understand from listening to and watching our channels, neuralgia is irritation of a nerve. We know that irritation of peripheral sensory nerves in the head and neck can cause…
08:01 — Dr. Lowenstein:
…various types of headaches. These 26 pages talk, not fully but largely, about the nature of what happens in the brain after these triggers start to cause pain. That can be very variable.
08:23 — Dr. Lowenstein:
Think of pain as a variable experience. Some people have a high pain tolerance, while others have a low pain tolerance. When some people are in pain, they wince; others scream; and others don’t do anything at all. Similarly, in some people, when these triggers occur…
08:44 — Dr. Lowenstein:
…the brain processes them as nausea, photophobia, or, in severe cases, hemiplegia. Some people say their eye twitches; others say their eye swells. The brain accepts these signals and then processes them.
09:04 — Dr. Lowenstein:
How these signals are processed determines how the headache manifests. How the headache manifests is, in many cases, how it is diagnosed. What we do is look at what is causing the headache.
09:25 — Dr. Lowenstein:
For example, if an infarct or stroke is causing the headache, that is clearly an acute problem and not something you want to see me for. You should be seen in an emergency room and by neurosurgeons…
09:49 — Dr. Lowenstein:
…and other appropriate specialists. But chronic headaches, migraines, and tension headaches are not always, but very often, caused by peripheral neuralgia. If we were going to reconstruct how to diagnose…
10:09 — Dr. Lowenstein:
…headaches, the term occipital neuralgia, for example, would become pervasive because occipital neuralgia literally means an irritation of the occipital nerves.
10:32 — Dr. Lowenstein:
Irritation of the occipital nerves causes migraines, chronic headaches, tension headaches, status migrainosus, acute persistent daily headache, and so on, depending on the timing and nature of the…
10:55 — Dr. Lowenstein:
…headache. Are all of those things actually occipital neuralgia? When you talk to neurologists, occipital neuralgia is characterized by sharp, shooting pains in the back of the head along the occipital nerve. We see those patients…
11:17 — Dr. Lowenstein:
…and treat patients with occipital neuralgia in the same way that we treat patients with migraines that originate in the occipital region, but they are different diagnoses. The confusion patients have about how to treat various headache diagnoses…
11:43 — Dr. Lowenstein:
…is frustrating. It’s frustrating to me, and I’m sure it’s very frustrating to patients. Questions about whether I treat headache X, Y, or Z are not as important as whether the headaches come from neuralgia of the…
12:07 — Dr. Lowenstein:
…occipital nerve, supraorbital nerve, or other nerves we treat. We treat the greater occipital nerve, lesser occipital nerve, auriculotemporal nerve, zygomaticotemporal nerve, supraorbital nerve, and supratrochlear nerve, on both sides. Figuring out the source of the pain and…
12:29 — Dr. Lowenstein:
…therefore the source of the diagnosis is key. How do we do that? We use nerve blocks. If you come in with a severe headache and a diagnosis of migraine, tension headache, or cluster headache…
12:58 — Dr. Lowenstein:
…and I give you a nerve block in the area that hurts, and the pain goes away, the diagnosis doesn’t matter. What matters is that it is being caused by irritation of that nerve. By releasing the irritation of that nerve…
13:23 — Dr. Lowenstein:
…your headache is very likely to improve. In my hands, a little over 90% of the time the headache gets better. Fifty percent of those people get 100% better, and the other 50% get at least 50% better—as in, they take a Tylenol and go on with their day. I wanted to discuss…
13:50 — Dr. Lowenstein:
…and clarify diagnosis and its confusion in an already very confusing area of headache care. I know many of you listening have seen many doctors. I’ve had…
14:11 — Dr. Lowenstein:
…a single patient with, I think, four different diagnoses from the same neurologist—four different headache syndromes. At the end of the day, the problem was her occipital nerve…
14:31 — Dr. Lowenstein:
…and we fixed it, which fixed all four headaches—or really, we fixed this one patient. I know it can be very confusing for patients, and that’s frustrating. I’d like people to start thinking about the cause…
14:53 — Dr. Lowenstein:
…rather than the diagnosis of these headaches. I know many patients are very attached to their diagnosis. This may make some patients angry to hear…
15:16 — Dr. Lowenstein:
…’We’re migraine patients, not occipital neuralgia patients,’ or, ‘We have occipital neuralgia; don’t confuse us with migraine patients.’ I’m sorry to upset those people, but I would argue that you can all be fixed. Not all can be fixed—that’s misleading—but many of you can be helped by the same process.
15:41 — Dr. Lowenstein:
Therefore, getting a workup for peripheral neuralgia with a nerve block is a great thing to do. If you get a nerve block and it doesn’t improve your pain, then you’re not one of the people whose pain is sourced from neuralgia.
16:01 — Dr. Lowenstein:
I wish you the best. It is not something we can fix as headache and migraine surgeons. But most of you will find that when you get a nerve block, your pain improves. Let’s go into that…
16:23 — Dr. Lowenstein:
…quickly. There are several types of nerve blocks: therapeutic nerve blocks and diagnostic nerve blocks. Either way, when you get a nerve block, you often receive lidocaine or another local anesthetic, which should alleviate your pain for a short period. Lidocaine lasts only about 30 to 40 minutes.
16:47 — Dr. Lowenstein:
If you get a nerve block and your scalp goes numb in the area supplied by that nerve—for example, a supraorbital nerve block should make this whole area numb, and an occipital nerve block should make this whole area numb—and your pain goes away for half an hour…
17:08 — Dr. Lowenstein:
…that is a positive result from a nerve block. These nerve blocks are not intended for long-term improvement. They simply tell us that when the scalp went numb, the pain went away. If you receive a steroid nerve block and the steroid…
17:34 — Dr. Lowenstein:
…irritates the nerve, as it often does in the short term, you may experience a brief period of numbness and headache relief, followed by the headache returning severely. That is because, as the local anesthetic stops working, the irritation from the steroid and the injection remains, making the nerve very…
17:56 — Dr. Lowenstein:
…irritated and causing a headache. That is even more support that the nerve is the problem, and removing the irritation with migraine or headache surgery should provide significant improvement. Getting those nerve blocks and experiencing numbness…
18:18 — Dr. Lowenstein:
…in the area those nerves supply, along with temporary relief, is what we expect. Temporary relief is a positive diagnostic sign from the nerve block…
18:42 — Dr. Lowenstein:
…and an indicator that the nerve is causing whatever headache diagnosis you have. I hope that provides some clarity. I’m sorry for my long absence. I’m going to try to find a few of these ongoing areas of confusion and provide information for the podcast…
19:06 — Dr. Lowenstein:
…and extended videos while still being a good dad and getting my kids to soccer. As usual, our phone number and website should appear shortly. Our website is headachesurgery.com.
19:27 — Dr. Lowenstein:
Our phone number is 805-969-9004. We’re more than happy to have virtual consultations with people who need further clarification or want more information about how we fix…
19:48 — Dr. Lowenstein:
…migraines or headaches. We call it migraine surgery, but we should call it headache surgery because it could also be called tension-type headache surgery or cluster headache surgery. If we call it all these different things, it becomes even more…
20:08 — Dr. Lowenstein:
…confusing. I hope that helps, and I hope I didn’t make it worse. Take care, feel better, and please get in touch if we can help you.
20:21 — Dr. Lowenstein:
Bye-bye.
20:22 — Dr. Lowenstein:
Hey, everybody. This is Dr. Lowenstein once again, and I have two last things to ask of you. First, the best thing you can do for fellow headache sufferers is to remember to subscribe to and rate our podcast. The more ratings and subscriptions we get, the more visibility we’ll receive, the more listeners will be able to find us, and the more help and information we’ll be able to provide to the huge population of people who suffer…
20:43 — Dr. Lowenstein:
…from headache pain. Secondly, please remember that the treatment of headaches of all types is very individualized. The purpose of this podcast is not to give medical advice, so please use the information here on this podcast and elsewhere on the internet to broaden your knowledge, but consult with your physician before acting on any information you hear on podcasts, see on YouTube, or read…
21:04 — Dr. Lowenstein:
…anywhere on the internet. I, as a physician, don’t necessarily endorse the opinions or practices of my guests. If you have particular questions that you’d like to consult with me directly about, please call our Headache Surgery Center. Our phone number is 805-969-9004, or you can email us at info@headachesurgery.com. My staff will set up a consultation, and we can discuss your specific…
21:27 — Dr. Lowenstein:
…case over the phone or in person. Our website is filled with information as well, and that is headachesurgery.com. Thanks, and best wishes from all of us here at the Headache 360 Podcast.
I, as a physician, don’t necessarily endorse the opinions or practices of my guests. If you have particular questions that you would like to consult with me directly about, please call our Headache Surgery Center.
Our phone number is (805) 969-9004, or you can email us at info@headachesurgery.com. My staff will set up a consultation, and we can discuss your specific case over the phone or in person.
Our website is also filled with information, and that is headachesurgery.com.
Thanks, and best wishes from all of us here at the Headache 360 Podcast.
Related Episodes & Reading
About the Host
About Dr. Adam Lowenstein
Dr. Adam Lowenstein, MD, FACS, is a board-certified plastic surgeon and the founder of the Migraine Surgery Specialty Center, with locations in Santa Barbara, Los Angeles, and Denver. He specializes in peripheral nerve decompression for chronic headache and migraine pain and is the author of Headache Surgery: Understanding a Path Forward. He hosts the Headache 360 Podcast to give patients a full view of headache diagnosis and treatment.
FAQ Section
Does the specific name of my headache diagnosis matter for surgery?
Less than most patients expect. In this episode Dr. Lowenstein argues that most headache diagnoses are subjective descriptions of how the pain behaves, not statements about its cause. What matters is whether the pain comes from irritation of a peripheral nerve — which a nerve block can test directly.
What is peripheral neuralgia?
Neuralgia is irritation of a nerve. Peripheral neuralgia refers to irritation of the sensory nerves in the head and neck — the occipital, supraorbital, and related nerves — which can produce many different headache presentations depending on how each person’s brain processes the signal.
How can one nerve cause several different diagnoses?
The brain processes pain signals variably. The same irritated nerve can present as throbbing, nausea, light sensitivity, or other symptoms in different people, and those differing presentations are often what lead to different diagnostic labels.
How does a diagnostic nerve block work?
A local anesthetic such as lidocaine is injected around a suspected nerve. Lidocaine numbs the area for roughly 30 to 40 minutes. If the scalp goes numb in that nerve’s territory and the headache goes away during that window, it’s a positive result — evidence the nerve is generating the pain.
My steroid block made the headache worse. What does that mean?
That can actually support the diagnosis. A steroid injection sometimes irritates the nerve in the short term, so once the anesthetic wears off the headache can briefly return with force. That reaction still points to the nerve as the problem, and to decompression as a likely source of relief.
What does a diagnostic nerve block tell my doctor?
A small amount of anesthetic is injected around a suspected nerve. If the pain disappears while the anesthetic is working, that points to the nerve as the pain generator. In surgical studies, patients who respond to nerve blocks are the ones most likely to benefit from decompression surgery.
What if the nerve block doesn’t help at all?
Then your pain is probably not coming from peripheral neuralgia, and it isn’t something that headache or migraine surgery can fix. Dr. Lowenstein is candid that not everyone can be helped — which is part of why the block is such a useful test before considering surgery.
What results does Dr. Lowenstein report from surgery?
In his experience, a little over 90% of appropriately selected patients improve. Of those, about half become essentially headache-free, and the rest see meaningful improvement — enough, as he puts it, to take a Tylenol and get on with the day. Individual results vary.
Medical Disclaimer
The Headache 360 Podcast is provided for general education and is not medical advice. Headache treatment is highly individualized. Please consult your own physician before acting on any information heard here. Dr. Lowenstein does not necessarily endorse the opinions or practices of podcast guests. To discuss your specific case, contact the Migraine Surgery Specialty Center at 805-969-9004 or info@headachesurgery.com.
