Is my headache likely to get worse?
April 27, 2005 9:52 PM   Subscribe

I just finished reading All in My Head by Paula Kamen. Her chronic headache seems to be worsening over time. I have a headache all day every day, but haven't noticed any long term worsening over the roughly 5 years I've had it. Should I worry?

I've been to two headache specialist neurologists, tried all kinds of meds and nasal surgery, and suffered many diagnostic tests - all to no avail. I'm quite certain I've got either chronic daily headache or new persistent daily headache (it's a little unclear to me how you can differentiate - but from what I've read, it appears unclear to the specialists, too).

In any event, I am asking if anyone has personal or secondhand knowledge of others in a like situation (all day every day type headache (ADEDH) that's not a migraine - no auras, nausea or sensory sensitivity) and what the long term changes were/are.

I have searched Google and other sites, but I haven't found the personal stories, just aggregate info that also includes others who fit the general criteria for the diagnoses, i.e. many who don't have an ADEDH.
posted by birdsquared to Health & Fitness (14 answers total)
Any talk of migraine with your docs?
posted by scarabic at 10:51 PM on April 27, 2005

I'm not entirely sure that ruling out auras and sensory sensitivity rules out migraines. Is it all over your head, or in one particular location? Did they do a scan of your brain? Have you tried bio-feedback, acupuncture or self-hypnosis? Also, are you sure it's not cluster headaches that just have short cycles? I would guess you'd know it was a cluster, because you'd want to bash your head against the wall. Cluster-sufferers are about 90% men, while migraines are something like 75% female. Have you tried low-grade caffeine? Did something change 5 years ago? New job, new family situation, new mattress, new house, new carpets, new car, new workplace? Have you done a food/trigger diary for a LONG period of time and discussed this with a neurologist? By the way, I'm not a doctor, but last semester I had horrible, horrible migraines. I pooh-poohed the idea that some foundation of them suddenly coming on had to do with stress; now I'm almost sure about that, and after dealing with the stress rather than the headache, they've all but disappeared. I changed a few other things because there was some thought that they were hormonal rather than solely external, but if the context - rather than just the symptoms - hasen't been seriously looked at, it's worth a shot. Good luck - I feel for you.
posted by fionab at 11:24 PM on April 27, 2005

Any jaw issues? After having my jaw re-set about 4 months ago, I realized with some shock about a month ago that my constant low-level headache, facial pain, and neck tension were gone. Gone! Now that my bite is finally close to correct for the first time in 20 years, i'm no longer gritting my teeth more or less constantly... and the change is amazing. In some ways I hadn't really realized the full extent of the pain I'd been in all this time till it was gone.
posted by scody at 11:31 PM on April 27, 2005

Does it go away during or immediately after ejaculation?
posted by Dean Keaton at 12:15 AM on April 28, 2005

I haven't got any answers, but here's some questions you might ask yourself. If you know it's migraines rather than 'ordinary' headaches, you can probably skip this.

Any variation in intensity between morning and evening? Any signs of bruxism (teeth grinding) or tooth pain? Hydration level ok? Getting enough exercise? Do you keep a journal with daily activities and headache intensity? Allergies? Congestion? What is your occupation? Is your computer monitor at eye level? What kind of shoes do you wear? Is the curvature of your spine normal? Are you overweight? Do you have a really fat wallet that makes you lean sideways when you sit down? Have you tried latex/buckwheat/inflatible pillows? Yoga? Do you have full range of motion in your neck?
posted by BrotherCaine at 12:47 AM on April 28, 2005

If you haven't a brain tumor, and haven't pseudotumor cerebri, and haven't cerebral lupus or other nasties (and we're assuming that one of these headache specialists must have MRI'd and LP'd you!) then the daily headaches aren't dangerous.

The most common cause I find of the sort of headache you describe is substance related. Caffeine is a common culprit, but all kinds of prescription and OTC meds also. Rebound headache from daily analgesic use is extremely common. Or there may be something ubiquitous in your environment that triggers headache for you. As an example from my own life, the Hallertau hops that Sam Adams uses reliably give me a migraine, as do the smells of lacquer thinner and diesel fuel.

Headache classification is a little silly - I try to focus my own personal clinical strategy on finding something that works to make the headaches go away. Classifiers are interested in other goals, such as conducting trials in a meaningfully rigorous way, and understanding the root cause of various headaches - but at the moment, the current classification scheme doesn't help make your headache go away, so I would suggest not paying too much attention to it.
posted by ikkyu2 at 1:13 AM on April 28, 2005

Maybe a food allergy/sensitivity? I get migraines, but for several years I also would get regular headaches frequently in the afternoon. Finally figured out that I have a sensitivity to something in Lean Cuisine meals (that brand only). I still get the migraines but eliminated the other random headaches when I stopped eating that brand for lunch.
posted by SashaPT at 3:17 AM on April 28, 2005

I would also definitely go with the grinding/bruxism guess... that can cause a lot of pain without realizing it (since most people grind their teeth when they're asleep.)

Another suggestion would be chronic anxiety? I had headaches on a daily basis (mild nagging ones all of the time...I do also get migraines, though) and they finally went away when I began treating my anxiety problem with an SSRI. Starting the drug actually caused the headache to worsen for the first few weeks or so--now I only get them when I'm having caffeine withdrawl, during weather changes, when I'm hungry, or after I can tell I've been grinding my teeth.
posted by fabesfaves at 6:13 AM on April 28, 2005

are you using a daily analgesic of any sort?
posted by docpops at 7:18 AM on April 28, 2005

Depending on your level of pain, it is possible they are Cluster HA. I had sinus surgery, etc. until the final diagnosis which is Chronic Cluster HA. Usually they affect men and are in the short term.

However the chronic type are known as "suicide" headaches because of the baffling pain. Mine come quite frequently and I use O2 and other abortive measures. I don't have a history of auras or nausea. Just extreme pain. You don't lay down with these...a lot of pacing and the desire to bang your head against the wall.

Search PubMed for more info. Here's one citation:

Cluster headache: focus on emerging therapies.

Matharu MS, Goadsby PJ.

Institute of Neurology, Queen Square, London, WC1N 3BG, UK, Institute of Neurology, Queen Square, London, WC1N 3BG, UK.

Cluster headache is a strictly unilateral headache that occurs in association with cranial autonomic features. It is an excruciating syndrome and is probably one of the most painful conditions known to mankind with female patients describing each attack as being worse than childbirth. In most patients, it has a striking circannual and circadian periodicity. This disorder has a highly stereotyped clinical phenotype and responds to specific therapies, thereby underlying the importance of distinguishing it from other primary headache syndromes. In this review, the clinical manifestations, differential diagnosis, diagnostic workup and treatment options for this syndrome have been outlined.
posted by Jikido at 7:25 AM on April 28, 2005

This is not cluster headache or anything like it. Stop with the cluster headache already.
posted by ikkyu2 at 10:31 AM on April 28, 2005

Sorry, birdsquared, I so wish I could help you!

But here's some information that may or may not help others who feel desperate: I've had headaches and migraines all my life (yes, even as a child — at which point one doctor advised my mother to either cut my hair, or never put it in a ponytail !). No medications prescribed to me in the U.S. ever helped, though I could very occasionally find relief with strong, codeine-based painklllers (which no doctor ever prescribed).

I have no idea why I'm so prone, but here's the interesting thing: once I left the U.S., my headaches and migraines unexpectedly stopped — and not only that, but the ones that I still do infrequently have are easily dealt with (90% of the time) by certain over-the-counter meds available here (non-codeine).

I don't attribute the change to living in one country versus another, at all, but finally, after consideration, I do attribute it to "dropping out" of the whole stress induction model.

This is not top advice... One should probably save it until it seems like there is no other answer. But if it comes to that, it may be worth considering just opting out of the lifestyle that causes so much stress (assuming this is the culprit, which, for me, I guess it was, mostly). Opting out carries its own stress, though, so it's definitely not a uniform prescription — just a mention of my own experience.
posted by taz at 10:43 AM on April 28, 2005

Response by poster: Thanks for all the comments. I didn't want to put too much info in the question, and thought I was clear I was asking about anyone's experience or knowledge about long term trends with ADEDH.

To address the various points and questions (not exhaustively):

My ADEDH is behind both eyes, generally between 2-4 on a 10 point scale of pain (occasionally up to 5, rarely down to 1, never 0). I've had MRI, CAT and Xray of my head and sinuses. I've had allergy testing (I have none), eyes examined (healthy), and I exercise semi-regularly, and am not overweight. I don't smoke, don't drink alcohol, and rarely consume caffeine. Both headache specialists I've seen have indicated it is VERY unlikely that I have migraine, given the combination of symptoms I do and don't have. Definitely NOT cluster headaches - I don't want to chop my head off (thanks ikkyu2)...

I've tried acupuncture, but not yet tried biofeedback (and don't think self-hypnosis is something anyone has suggested).

There were no changes that I'm aware of 5 years ago, and leaving my circumstances for a month of international vacation (plus many other shorter trips) have led to no change in headache, meaning it is unlikely to be a lifestyle trigger.

There are no jaw issues that I know of, and using a bite block at night at my dentist's suggestion for 1/2 year has had no effect.

I have kept track of my headache and any possible triggers over 18 months or more, with no discernable suspects.

I use OTC painkillers occasionally. I've never used them for more than two days in a row (other than recovering from surgery).

I'm not an anxious type, or stressed out, and among the various (over a dozen) meds that have been tried are Paxil, anti-depressants and anti-convulsants - all with no effect on the headache, though some with some pretty crappy side-effects that made me stop taking them quickly.

I'm 36, and other than one similar headache that lasted a week or so in my late 20s, I have only had the occasional headache in my past. I've never had a migraine.

I don't think there's much more to say. I have bio-feedback and physiotherapy on my list of things to try, and if a new wonder drug comes out, I'm sure I'll give it a try, but for the most part, I'm resigned to having a head that hurts. I am just wondering if it is likely to stay the same or get worse in the long term.

Thanks again.
posted by birdsquared at 2:52 PM on April 28, 2005

I was going to post this last night but the server went down.

This kind of headache is very common.

You might be interested in reading the articles at this headache clinic site site.

You should then be able to find a physical therapist who has studied the Maitland Method (which is an Australian Physiotherapy technique) or similar mobilising techniques. My friend works for a headache clinic in Australia. He suggests you try sustained head retraction exercises, held for thirty seconds, repeat every half hour for the first day or two. When you get relief, you can then reduce the frequency of the retraction exercises but you must hold the "chin in" position for a minimum of thirty seconds to realign the upper cervical spine. This simple approach, painful at first, can provide significant relief. Cervicogenic headache can often have a simple postural cause.

My friend is amazed that you have not been shown exercises to correct the alignment of the upper three verterbra to correct adverse stress on highly pain sensitive structures in the neck. These structures can make the trigeminal nucleus sensitive to stimulation and precipitate severe headaches of a non-migraine nature.

Also worth visiting a Feldenkrais Method practitioner in your local area. They can give you exercises that restore the normal head neck alignment you had when you were a child.
posted by lucien at 3:55 AM on April 29, 2005 [1 favorite]

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