JULY 10, 2001 MEETING NOTES
TOPIC:  “HEADACHE AWARENESS DAY” - Dr. Michael Stein

The East Bay Headache Support Group hosted a special meeting, called Headache Awareness Day, on July 10.  Dr. Michael Stein, a Walnut Creek neurologist and co-founder and medical advisor of the organization, was the speaker for this event, which was held in the Ball Auditorium at John Muir Medical Center.  Twenty-nine persons were in attendance, including 16 new people who had read our newspaper article published that same morning in the Contra Costa Times.

Dr. Stein began his presentation by asking, “What topic would you like to hear about this evening?”  A couple of topics volunteered were:  “Hormones” and “what medications are used now?”

Dr. Stein asked what it means to have “headache awareness” and then he answered his question with the statement that it is making the owner aware, and also making the family aware of the headache condition.  He asked, “Have you ever not told someone about your headache?”  And, “How many of you suffer in silence?”  He went on to say that headaches are a biological disorder—it is a real medical entity.  Some people might say it’s all in your head, but that’s just not true.

A husband in the audience whose spouse could not attend this meeting because of a “crushing” headache said that he needs support in being her caregiver.  Then a woman added that she just needs to be left alone when she has a headache.  And another said she needs to have her caregiver take over her duties whenever she has a bad headache.  Note the January 8, 2002 meeting of the East Bay Headache Support Group will directly address these issues.  We will have two marriage and family therapists facilitate the meeting, to provide a caring place for headache sufferers and their spouses/caregivers to air their frustrations about living with a chronic headache condition.

Dr. Stein told the audience that many headache sufferers are sensitive to light and sounds, called photophobia and phonophobia respectively, and also odors, called osmophobia.

He said that this month, a new triptan, Axert, manufactured by Pharmacia, will be on pharmacy shelves.  And a 6th triptan is also coming soon, to provide us with many choices in abortive medications for treating migraine headaches.  The other triptans currently available are Imitrex, Zomig, Maxalt, and Amerge.

Dr. Stein asked if there were other issues about treatment that the audience would like to learn about.  Rebound headache was mentioned, so he discussed the phenomena of rebound headaches.  He said it is true that you can get rebound headaches from overuse of triptans, not just from over-the-counter medications.  He said that with triptans, rebound can take less time to occur, but it also takes less time to get off it. 

Fiorinal has been banned from the market in Germany because of its tendency to bring on rebound headaches.  Dr. Stein said that to get rebound headaches from overuse of a medication, you also have to already have a predisposition toward headaches.  Some common medications known to cause rebound headaches are:  Excedrin, Advil, aspirin, Aleve, Fiorinal, and Cafergot.

He asked the audience if anyone knew the ingredients in Excedrin and then he proceeded to list them:  Excedrin includes a large amount of caffeine, plus aspirin and Tylenol.  Can an ulcer develop from taking Excedrin?  Dr. Stein answered that people don’t think of the aspirin in Excedrin, which can cause bleeding and an ulcer.

What about the use of Botox (botulinism toxin) for treating headaches?  Dr. Stein answered that about 12 years ago a scientist found he could paralyze muscles in the face for up to 3 months using botulinism toxin, as a treatment for muscle spasms.  Then a plastic surgeon (Dr. Bender) discovered that wrinkles would go away because of the muscle paralysis, and some of his patients discovered they had no headaches during the 3 months.  Now it is becoming known as a possible treatment for headaches (cluster, tension, migraine, and chronic daily headaches).  Dr. Stein said that some doctors give injections in the forehead and others inject the toxin both in the forehead and back of the head.  He said he has no experience with it, however.  According to one study, headache relief for 50% was achieved with Botox injections, and 30% received some relief, while for 20% it didn’t help at all.

Botox is very expensive.  Dr. Stein said that no insurance company will cover it for the treatment of headaches—as far as he knows it has only been approved for a very few conditions.  A woman in the audience said that Healthnet authorizes Botox injections for treatment of muscle spasms.  Apparently the FDA (Food & Drug Administration) has approved it for muscle spasticity, but not for headaches.

In discussing the pros and cons of Botox injections, Dr. Stein said that if it is injected too near the eye it can cause a drooping eyelid.  But on the plus side, there are no side effects as the botulinism toxin does not get into one’s system.

As audience members asked Dr. Stein about various headache medications on the market, he discussed them.  Zanaflex was mentioned, and then Imitrex.  Three women in the audience mentioned that they get a pins and needles effect after taking Imitrex.  One woman said that her pharmacist told her she can take up to 10 Maxalt a week (another triptan), or up to 3 in 24 hours.  That exceeds the amount normally recommended by the manufacturer, though.

A man in the audience asked, “Is there anything in the works so you don’t have to take anything?”  Dr. Stein answered, “What you mean is a cure, right?” and audience members chuckled. 

It was mentioned that in Canada you can purchase 7.5 milligrams Tylenol w/ codeine over the counter, whereas in the United States a prescription from a physician is required. 

Dr. Stein asked the audience, “What about caffeine?  Did you know that the active ingredients in Anacin are caffeine and aspirin?”  He went on to say that caffeine is an adjutant (or helper)—it increases potency of a mild medicine.  Caffeine withdrawal headache was mentioned by several members of the audience.  Dr. Stein said that NoDoz gives you 100 milligrams caffeine, and Vivarin for weight loss is even more potent, at 200 milligrams.  Caffeine levels in coffee are either 50 to 100 milligrams per cup, or up to 250 milligrams according to one man in the audience.  And Cafergot, a migraine medication that’s been around for years, contains 200 milligrams caffeine.

Dr. Stein was asked, “How do you tell what causes the headaches?”  This person said he gets migraines and other types of headaches also, and added that Fiorinal w/ codeine is the only medication that works for him.  But now the Kaiser doctors tell him he’s taking too much of it. 

To respond to his question, Dr. Stein listed some of the common triggers for headaches:

·      Lack of sleep

·      Too much sleep

·      MSG (monosodium glutamate, a common food additive)

·      Aged cheeses

·      Stress

·      Missing meals

Another question asked was, “How do you tell the difference between migraines and other headaches?”  This woman said that her headaches move all over her head and they usually come on during the middle of the night.  She has them every 10 days to 2 weeks, and some last 3 days.  Then another woman described her headaches also:  she has headaches 2 weeks out of 4 and they seem to correlate to her menstrual cycle.  At this, Dr. Stein mentioned that Barr Pharmaceuticals has come out with a product called Seasonale. 

Seasonale is a birth control pill that a woman takes every day for 84 days straight, and then goes a week without it before resuming.  A woman in the audience said she’s been on this regimen for 2 years, and added that you have to be very watchful for other things.

A man said that he gets headaches whenever he eats anything with MSG in it.  But he’s found that he can drink a glass of milk and the headache goes away in 20 minutes.  Could it be the calcium, or protein, or lactic acid in the milk?  No one had an answer to his question.

Two types of migraine headaches were discussed:  classic (with aura) and common (without aura).  The aura usually lasts about 20 minutes, after which the head pain usually starts.  One woman commented that she used to describe her auras as sparkly lights, but now they look more like Swiss cheese.  She recounted a story where she was chased by a dog and lost her eyesight for about an hour.  Then she had a severe pain in the back of her neck for a long time.  And she described it as the worst headache she has ever had.  Dr. Stein commented that during the aura phase of a migraine, there is constriction of blood vessels, which causes nerve cells in the back of the head to stop working which could make you blind.  An older man in the audience said that might also account for his loss of peripheral vision.

One woman asked about neck pain—should she try going to a chiropractor?  Biofeedback was mentioned as another alternative therapy to try.

The question of whether an ice pack helps when one has a headache came up—does it help on the back of the head?  Dr. Stein said that it would cause constriction of arteries in your scalp, and added that ice has a mild anesthetic effect.  Heat dilates the blood vessels.  Some feel cold when they have a headache and use heating pads for some relief.  One woman said she pulls her hair for a bit of relief from the pain, and others added that they get into an ice cold shower.  An older man in the audience gave everyone a laugh when he commented that he puts frozen peas (a bag of frozen peas) on his head and hot water on his feet for headache relief.

Do people ever outgrow their headaches?  Dr. Stein said that migraine headaches, at least, typically start in the teen years, and peak in severity and frequency around age 30 to 40, and then tend to taper off about age 60 to 70.

Inderal is still in widespread use as a preventive medication for treatment of migraines.

It was noted that if you have uncontrolled hypertension (high blood pressure), you cannot safely take any of the triptans.

Compounding pharmacies were then discussed, including Doc’s Pharmacy across the street from John Muir Medical Center.  There is another one on Newell Avenue in Walnut Creek, and one on Bacon Street in Concord.  Compounding pharmacists can take medications and compound them into other methods of dose delivery, i.e., for a person who cannot swallow pills they can make up suppositories, or lozenges, to use instead.

Ketoprofen gel, an external pain reliever, was mentioned as a headache reliever; and it can be purchased over-the-counter in Alaska, according to one audience member.  Also, Myoflex is a sports creme that is available over-the-counter.  DMSO was also mentioned—it is highly soluble through the skin.

A woman asked if there is any reseach on linkage between liver function and headaches?  Her acupuncturist asked her to take a liver panel as part of a routine workup.  Dr. Stein said he hasn’t seen a correlation between liver function and headaches.

The question was asked about the best delivery system for headache medications.  Dr. Stein said that injections work the fastest, and then there are suppositories (with its own problems), or one can put certain medications on or under the tongue (sublingual), and others are available as nasal spray inhalers (Imitrex nasal spray is one).  He added that taking medications orally can be a problem if the patient is feeling nauseous from the migraine.

He explained to the audience that the reason the triptan medications are individually packaged and hard-to-open is that they lose their potency if exposed to air.  They must remain in an airtight package until ready for use.

What about preventive medications?  Inderal is a beta blocker which was discovered by accident to be helpful in the prevention of some people’s migraine headaches.  Some other preventives include Corgard, Tenormin and Lopressor; and also magnesium supplements, 5-HTP, antidepressants and antiepileptic drugs.  Topamax is an antiepileptic which has been discovered to have a great side effect—it causes the patient to lose weight.  But it’s also tough to tolerate as it can cause cognitive problems.

Neurontin is an antiepileptic with no apparent side effects, but it may not be the best.  Very few of these preventive medications have been approved by the FDA specifically for use in the treatment of headaches.

Dr. Stein cautioned that if you have asthma, depression or diabetes, taking Inderal can be dangerous.

One participant said she had good luck taking Zanaflex.

Dr. Stein told the audience about his new baby—the Neurological Institute of the East Bay.  He passed out business cards for his new research center and said to contact him if anyone is interested in becoming a research subject.  And he introduced his research assistant, Evelina.

Dr. Stein talked about how he’s noticed that migraine-prone individuals experience visual disturbance, or discomfort.  The women anyway seem to wear clothes with little or no pattern (no wild stripes or checks or colors) and decorate their houses rather plainly.  Sometimes he will show a picture with bright zigzags to a migraine patient and the patient will invariably say it’s hard to look at—the strong pattern is disturbing.

Also, migraineurs, at least in childhood, are prone to motion sickness.  It has been noted that many children who get sick riding in cars later grow up to have migraine headaches. 

Dr. Stein said these point it up as a medical condition, a biological disorder.  He said there is one type of headache, familial hemiplegic migraine, for which scientists have found the genetic marker, and some day they may find the genetic marker for more common migraine.  It is well known that migraine tends to be inherited.

A final comment by Dr. Stein:  “One way to induce a migraine is to take nitroglycerin.”  

The intention of the East Bay Headache Support Group is to provide information and resources.  It does not provide medical advice, which should be obtained directly from a physician.