Epilepsy Talk


Modern medicine can do miraculous things — but every test and treatment has a downside.

And your doctor may not disclose the dangers without prompting, a new survey finds.

Researchers surveyed 2,700 patients who’d recently decided whether or not to have surgery, take a medication, or undergo cancer screening.

Most reported their physician spent far more time talking up the benefits of each choice than explaining the risks.

In fact, with the exception of low back surgery, less than half the participants reported even some discussion of the cons.

Some patients felt left out of the decision-making process altogether.

Only about 40% of those choosing whether or not to have a mammogram or take blood pressure or cholesterol-lowering drugs said their physician asked for their input.

The results, published in JAMA Internal Medicine, suggest that often, “physicians just make the decisions themselves and then tell patients,” says study author Jack Fowler, PhD, of the University of Massachusetts and the Informed Medical Decisions Foundation.

True or false: You chose your doctor based on how close their office is to yours, and what’s covered by your insurance. For those of you who answered true — and let’s be real, that’s most of us — new research shows that that kind of decision-making could be costing you your health.

To get a better idea of how Americans choose their healthcare providers, Healthgrades  http://www.healthgrades.com/ plus The U.S. News & World Report http://health.usnews.com/doctors?int=98e908 websites that provide information about physician and hospital quality, conducted a national survey of more than 7,700 adults 18 and older.

The results? Many Americans spend way more time researching what car to buy than they do choosing a doctor. 

While more than 90% of adults say it’s important to make the right choice when selecting a physician or hospital, nearly half of adults feel they’ve made the wrong ones.


Conspiracy theorists aren’t shy about proclaiming the evils of Big Pharma. But conspiracy theory is one thing, and documented proof is a whole different beast.

When the Harvard Law School took a closer look, they realized that they didn’t have to dig very deep at all to discover that doctors are paid handsomely to prescribe certain drugs, even when those drugs turn out to be harmful.

One of the most publicized recent cases was Dr. Joseph L. Biederman, who began diagnosing two-year-old toddlers with bipolar disorder and prescribing strong antipsychotics that were never approved by the FDA for children under 10.

The manufacturer of the antipsychotics paid him $1.6 million!

Then there’s Dr. Alan F. Schatzberg, who began prescribing an abortion drug to treat depression — he owned $4.8 million of stock in the company that produced the drug.

And then you have Dr. Charles B. Nemeroff, who received $500,000 to advertise a drug as safely when, in reality, it can cause seizures and paralysis.

The fact is, doctors are allowed to prescribe any drug for any illness, no matter what the drug was originally intended to treat.

But the question is: How do you know which ones do?


From deductibles to drugs, chances are your doctor visit will run more than insurance will pay.

But while a Journal of the American Medical Association study showed that 79% of doctors think it’s important to tell patients about these costs, only 35% actually inform them.

Their excuse? Many physicians say they’re under time pressures and don’t know how much patients are spending on out-of-pocket costs, says Dr. G. Caleb Alexander, the study author.

Yet, if you talk with your wallet and question the medical expenses, most doctors will work with you to lower the costs, says Dr. Alexander.

Your doc can prescribe a 3-month instead of a 1-month supply of a drug to help you save on the co-pay. A small thing to them, saved bucks for you.

They can look at the prescriptions you take and services you receive, such as physical therapy, and reevaluate which can be used on an as-needed basis.

Case in point: The insurer WellPoint provided members who had scheduled an appointment for an elective magnetic resonance imaging test with a list of other scanners in their area that could do the test at a lower price.

The alternative providers had been vetted for quality, and patients were asked if they wanted help rescheduling the test somewhere that delivered “better value.”

Fifteen percent of patients agreed to change their test to a cheaper center. “We shined a light on costs,” said Dr. Sam Nussbaum, WellPoint’s chief medical officer.

“We acted as a concierge and engaged consumers giving them information about cost and quality.”


Direct-to-consumer pharmaceutical ads can be pretty effective at convincing patients that they need a particular medication (drugs to treat depression, diabetes, or erectile dysfunction are among the most heavily advertised).

And even doctors can be swayed by these ads, notes David H. Newman, MD, director of clinical research in the emergency department at Mount Sinai Medical Center in New York and the author of “Hippocrates’ Shadow”.

Doctors still aren’t getting the message when it comes to antibiotics.  Prescriptions have risen by 40% in the past 12 years, and for problems they can’t help with, such as colds and coughs.

The overuse of antibiotics brings closer the day of the superbug, which is resistant to all antibiotics, researchers fear.

“40% of patients with colds who go to a doctor get an antibiotic,” says Dr. Howard Brody, director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University.

And studies show half of patients who go to a doctor with a cold are prescribed an antibiotic. Colds are caused by viruses — antibiotics kill only bacteria.

Doctors should explain why antibiotics won’t help and suggest some symptom relief  that won’t come with side-effects such as diarrhea, yeast infections, allergic reactions, and other unpleasant and potentially dangerous side-effects.


It’s no secret that pharmaceutical companies push new drugs on doctors.

But now they employ data-mining to do so.

For a licensing fee, industry marketers can access the American Medical Association’s database of physicians, which allows sales reps to track down precisely which drugs a doctor is prescribing.

“That’s how reps get incentivized — they know what drugs to pitch to what physicians,” Arkoosh says.

“Those drugs are always the most expensive drugs. And we don’t have a full understanding of the safety profile of these drugs.”

(In 2004, Merck pulled its blockbuster anti-arthritis drug after a study revealed that Vioxx increased patients’ risk of heart attack and stroke; the company has paid out billions of dollars to settle the resulting lawsuits. Cheap alternative: ibuprofen.)

The good news is that Obamacare requires doctors to disclose in a public database any gift worth more than $10 that they receive from pharma reps.

Until next year, when the provision kicks in, the NPA counsels doctors to opt out of the AMA database.


Whoever first said “An apple a day keeps the doctor away” probably wasn’t an M.D.

A study published in the American Journal of Clinical Nutrition found that only one in six doctors preaches to patients about nutrition’s role in preventing disease, while Colorado researchers found that just 28%  of doctors mention exercise.

“We tend to be more pharmacologically oriented because of our M.D. training,” says Dr. Mark Houston, author of “What Your Doctor May Not Tell You about Hypertension”.

If your doctor doesn’t have answers about nutrition or exercise, he knows someone who does.

Ask for a referral to discuss basic preventive health strategies.

And don’t forget there ARE alternative options to complement your treatment.

Consider: Acupressure, Acupuncture, Chiropractic Care, Complementary Medicine, Osteopathy Herbal Medicine, Homeopathy, Meditation, Music Therapy, Reflexology, Relaxation Techniques, Supplements and Yoga.


Just about every drug and surgical procedure poses risks to the patient.

Yet some doctors understate the risks posed by the treatments they recommend.

Similarly, when doctors order X-rays, cardiac catheterization, and other diagnostic tests, they sometimes fail to explain the risks.

These include the risk of a false-positive (indicating a medical problem that doesn’t exist), which can lead to needless anxiety and to even more tests.

“Doctors are very good at talking about benefits,” says Newman. “They’re not good at talking about risks.”

What to do: Ask the doctor to explain any risks posed by a recommended test or treatment.


To cover their own butts, doctors sometimes take a needless trip up yours. A nationwide sample of “surveillance” colonoscopies — follow-up procedures done after polyps are removed — found that up to 50% of doctors recommended these tests unnecessarily.

This better-safe-than-sorry mindset keeps docs safe against lawsuits, and isn’t limited to colonoscopies.

For the past two years, the American Board of Internal Medicine Foundation, one of the largest physician organizations in the US, has released reports on the most overused tests and treatments that provide limited or no benefit to the patient, or worse, causes more harm than good.

The list currently includes a total of 135 different tests, procedures and treatments.

According to a report by the Institute of Medicine, an estimated 30% of all medical procedures, tests and medications may in fact be unnecessary — at a cost of at least $750 billion a year.

Plus, the cost of emotional suffering and related complications and even death – which are impossible to put numbers on.

While overuse and misuse have become a deeply ingrained part of the culture of medicine, there are hopeful signs that things are starting to change.

Dr. Makary points out a number of standard blanket recommendations have been changed in recent years, such as daily aspirin regimen, PSA testing, and annual mammograms.

Watch out for the most overused procedures: MRIs and CT scans, echocardiograms, and stress tests all scored high in a survey of health insurers.

“When your doctor does make a recommendation that seems aggressive, ask why, and where you fit in the assigned guidelines,” says Dr. Pauline Mysliwiec, author of the colonoscopy study.


“In many doctors’ value systems, surgery is the default,” says Christopher Meyers, head of the Kegley Institute of Ethics at California State University.

But research indicates that surgery often isn’t the best option.

A Baylor College of Medicine study showed that chronic knee pain didn’t change after surgery, while another study found that taking a wait-and-see strategy with hernias may be as effective as going under the knife.


Doctors are under tremendous pressure these days. Not only are they asked to see more patients per hour, many surgeons even have surgery quotas to meet.

As horrible and unethical as it sounds, “They’re told they need to do so many operations in a month,” Dr. Martin Makary says.

“Sometimes doctors tell me they get text messages and emails, saying, ‘You need to do so many operations by the end of the month.’ They’re expected to do more, often with less resources.”

Quotas aren’t the only symptom of a major disconnect between healing a patient’s problem and running a for-profit disease management scheme.

As discussed by Dr. Makary, sometimes a computer software program will order tests and studies automatically, and the doctor just has to sign off on them.

“You should always ask what the alternatives are to surgery, including an approach that most physicians feel uncomfortable offering: to do nothing,” says Meyers.

If your doc is still scalpel-happy, get a second opinion from a doctor of osteopathy.

“These doctors take a more holistic approach and are familiar with newer literature that promotes different strategies,” says Dr. Houston.

But before you consent to surgery, ask the following questions:

“Do I really need this done?

When am I going to be back to feeling good?

What if I don’t have this procedure done?

Can I wait a year and see if this gets better?

What if I wait and then something develops in the interim? How do we handle it at that point and what are the odds of success then versus now?”


Doctors won’t post signs on their office doors to inform you of their disciplinary infractions or the number of malpractice claims they’ve paid.

But you need to know.

The best thing to do is go to www.docboard.org — a site with a searchable database from 15 state medical boards and links to the databases of the other 36 boards.

If a practitioner you like has been reprimanded, ask him about it.

“If a doctor refuses to answer questions about his background or about whether or not patients have sued him, you should run,” says Dan Fee, a spokesman for Citizens for Fairness, a coalition of patients’-rights groups.


Yes, sadly enough, they do exist.

Your doctor doesn’t have to disclose his criminal history, and usually that wouldn’t be considered a problem.

Between the strict admission policies of most medical schools and the vague notion that hospitals probably screen their employees, who would even think to ask?

Well, maybe you should.

In November 2013, the UK’s General Medical Council, or GMC, released a database with the criminal histories of physicians in the United Kingdom.

It turned out that almost 800 practicing doctors held criminal records, including 31 who were arrested for assault and 330 arrested for drunk driving.

The rest of them?

Crimes range from theft to drug trafficking, and they’re under zero legal obligation to let their patients know about it.

And it’s not exactly rare.

There’s the rapist surgeon working in Miami, and the New York doctor who was caught trying to meet a young boy for sex, and a Scottish physician who had reams of child pornography stored on his computer.

Who’s really taking care of you?


For the past two years, the American Board of Internal Medicine Foundation, one of the largest physician organizations in the US, has released reports on the most overused tests and treatments that provide limited or no benefit to the patient, or worse, causes more harm than good.

Last year’s report warned doctors against using 45 tests, procedures and treatments.

This year, another 90 tests and treatments were added to the list.

To learn more, I encourage you to browse through the Choosing Wisely web site, because  they provide informative reports on a wide variety of medical specialties, tests, and procedures that may not be in your best interest. As reported by NPR:

“The idea is to curb unnecessary, wasteful and often harmful care, its sponsors say — not to ration care. As one foundation official pointed out last year, rationing is denial of care that patients need, while the Choosing Wisely campaign http://www.choosingwisely.org/ aims to reduce care that has no value.”


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  1. Wow! Very useful information. Thanks Phylis! One thing I’d like to note, though. In terms of epilepsy I think most doctors still don’t use brain surgery except in “proven” cases such as temporal lobe and other focal epilepsies that have a high rate of success.

    Of course, there is the use of the VNS and other upcoming devices. I don’t know how overused they will be. I guess we will have to do our own research and make informed decisions.

    Liked by 1 person

    Comment by Soo Ihm — January 4, 2015 @ 3:19 PM

  2. Well, in the future, you might consider Trigeminal Nerve Stimulation. (TNS)

    The advantage over Vagus Nerve Stimulation (VNS) is the ability to stimulate noninvasively through the skin of the forehead to test response to therapy.

    If it helps, then stimulators can be implanted under the skin.

    Studies have shown that a small number of severely epileptic patients who used the TNS for a year, saw their number of seizures drop by an average of 60%.

    Here’s the article:

    Trigeminal Nerve Stimulation — A Breakthrough Technology Reducing Seizures by Up to 66%


    See what you think!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 4, 2015 @ 4:23 PM

  3. This was very informative this article ! Thank you Phylis ..


    Comment by maryleeparker — April 29, 2015 @ 10:51 AM

  4. Thanks Marylee. Anything I can do to help, just sing out!


    Comment by Phylis Feiner Johnson — April 29, 2015 @ 11:51 AM

  5. This is a good article and I learned from it. Having first developed epilepsy at age 6, I learned early something heard often since – neurologists often over prescribe. How do the problems you describe affect epilepsy-related prescribing?


    Comment by Kate Jacques — May 31, 2015 @ 9:16 AM

  6. My problem was just the opposite. My measure was half the therapeutic level.

    The best bet is to have a complete blood panel, to see how much of the drug is actually in your system. From there, you can determine whether it’s too much, too little or even necessary at all.

    Comment by Phylis Feiner Johnson — May 31, 2015 @ 10:12 AM

    • Good point a lot of Drs. Assume your general physicians will do that these days and I had to ask for a CBC, Chem. Level, and Medication levels do to my symptomologies. Oh no oone has done, no problem.


      Comment by red2robi — October 29, 2015 @ 6:35 PM

  7. Worked in the industry and saw both sides, it seems what pressure the physician is under. My Epileptologist told me not to have back surgery. I got another opinion and it was stated that location makes big money in orthopedics and your Epileptologist was right. Medications follows the same protocol a general Neurologist kept giving me medications to control my seizures and I was up to 8 before but the companies would give lunches, free samples , and trinkets. The Neurologist transferred me to a University hospital and now I only take only 4. When started have seizures I only took 1 medication.


    Comment by red2robi — October 29, 2015 @ 6:30 PM

  8. BIG Pharma strikes again?

    Or is it a band-aid out of desperation?


    Comment by Phylis Feiner Johnson — October 30, 2015 @ 9:30 AM

  9. I was hospitalized for Pancreatitis. A specialist at the hospital said that I need to go off of a water pill I was taking. When I did my blood pressure soared up to 150/?. That hospital’s doctor told me that it was because that diuretic was also used to treat high blood pressure and that once someone goes on blood pressure medicine it is very rare to go off of it. I didn’t have high blood pressure when I was put on the water pill a year before. So, in essence, being on a diuretic gave me high blood pressure. I was never told about the side effect beforehand not was I given information about other possible treatments. I would rather have retained water than have high blood pressure.


    Comment by Leica — October 30, 2015 @ 12:46 PM

    • Well, that sounds like a major boo-boo.

      RE: Your Pancreatitis, and blood pressure.

      The information below from Penn State Medical Center may interest you…

      “Numerous studies have explored the role of antioxidants to help rid the body of harmful cells called free radicals.

      Low antioxidant levels in the blood (including reduced amounts of vitamins A, C, and E, selenium, and carotenoids) may lead to chronic pancreatitis due to the destructive effects of increased free radicals.

      Antioxidant deficiency and the risk of developing pancreatitis may be particularly linked in areas of the world with low dietary intake of antioxidants.

      You may address nutritional deficiencies with the following supplements:

      A multivitamin daily, containing the antioxidant vitamins A, C, E, D, the B-complex vitamins, and trace minerals, such as magnesium, calcium, zinc, and selenium.

      Omega-3 fatty acids, such as fish oil, 1 to 2 capsules or 1 to 2 tbsp. of oil daily, to help reduce inflammation and improve immunity. Omega-3 fatty acids can have a blood-thinning effect and may increase the effect of blood-thinning medications, such as warfarin (Coumadin) and aspirin.

      Coenzyme Q10 (CoQ10), 100 to 200 mg at bedtime, for antioxidant and immune activity. CoQ10 might help blood clots. By helping the blood clot, CoQ10 might decrease the effectiveness of warfarin (Coumadin).

      Vitamin C, 1 to 6 mg daily, as an antioxidant. Vitamin C may interfere with vitamin B12, so take doses at least 2 hours apart. Lower the dose if diarrhea develops.

      Probiotic supplement (containing Lactobacillus acidophilus and other beneficial bacteria), 5 to 10 billion CFUs (colony forming units) a day, for maintenance of gastrointestinal and immune health. Some clinicians will not give probiotics to severely immune-compromised patients. Speak with your physician.

      Alpha-lipoic acid, 25 to 50 mg twice daily, for antioxidant support.”


      Hopefully this will help, rather than confuse you. (You can tell I believe in natural supplements. I was a Health & Wellness writer in my previous life.)

      I know my husband swears by and gives his 94 year-old mother all of the above. Particularly CoQ10 (Coenzyme Q10) and probiotics.

      That doesn’t necessarily mean they will work for you. Every body is different. And this may be overkill for your condition.

      But I can’t stress enough the importance of a multivitamin, CoQ10 and probiotics.

      All that being said, I would ask my physician first.


      Comment by Phylis Feiner Johnson — October 30, 2015 @ 3:45 PM

  10. Thank you for all the work you do. I refer to your articles a lot.


    Comment by Leica — October 30, 2015 @ 12:48 PM

  11. I was told to have back surgery but looked at results of the tests. I am getting a second opinion. My Orthopedist thought it was a toss up but needed more tests. I like your information you have given. It makes me really want another second opinion.


    Comment by red2robi — December 10, 2016 @ 12:35 PM

  12. I agree completely, Robin.

    Second (and even third) opinions are a good thing. Especially when you’re talking about serious surgery.


    Comment by Phylis Feiner Johnson — December 10, 2016 @ 12:51 PM

  13. Thank you Phylis!! Excellent information and makes me appreciate my physicians, especially my Epileptologist, who do not push any thing on me! They inform me when things need to be changed and I agree with them.


    Comment by red2robi — February 19, 2017 @ 3:14 PM

  14. You’re one of the blessed. (And happily, so am I.)


    Comment by Phylis Feiner Johnson — February 19, 2017 @ 6:05 PM

  15. Hey Phylis,

    On number 7, I think the more tests that can be done the better to determine ones problems. Especially if it seems unsolvable. A lot of docs dismiss peoples worries or pains and just don’t do anything. I complained to my doc about frequent headaches i would have at work, it had been ongoing for quite some time, since i’m not one that likes to go to docs or hospitals, i rarely complain unless if there is something really wrong. Well he kind of dismissed it and not sure what he said, but i went home with no definite answer, just a prescription for headache meds. The right thing for him to have done is send me off to a ct scan which scans the brain. Easy to say in hind site, but my then girlfriend told me i should go in for an MRI.

    Fast forward a few months in which i had little seizures that i had no idea what they were, well i had a grand mal at work not knowing what that was i called it a faint spell at the time i went into the ER after the advice nurse i called suggested i go in. That’s when they found my brain tumor.

    For me surgery was necessary, since my tumor was so big, they told me if i didn’t have it, i would soon go into a coma. That was a no brainer decision, i had the surgery and now 10.5 yrs later i feel good, except for the seizures. But lately i’ve had great progress with them. Last year i had 3 seizures the whole year, there was 7 month where i didn’t have any. That is great since i used to have them every month for 7 yrs or so.

    Keep up the good work,



    Comment by Zolt — February 20, 2017 @ 3:50 PM

  16. Hi Zolt, it’s great to hear from you.

    Your point is well taken since number seven doesn’t particularly apply to neuro tests. Or even psychological ones. (PNES).

    It’s wonderful to hear your seizures have at least abated.

    Hope the rest of you is in good health. I’ve missed you!


    Comment by Phylis Feiner Johnson — February 20, 2017 @ 3:59 PM

  17. I’ve always thought that it a doctor has a commercial on TV, don’t go to that doctor. They’re probably not that good, and are just desperate to get patients.
    As for commercials about medications, it always seems as though the medicine is “supposed” to help with a certain health problem. Yet, when you listen to the side effects, it’s as though it could cause trouble for the health problem that it’s supposed to take care of. Also, a medicine that REALLY helps a health problem, wouldn’t need to be commercialized, for a doctor or hospital would already know about it.
    Finally, as for tests that would be “To Risky”. There are times when one wouldn’t really know, without taking the risk.
    Plus, a few months ago, I was at Johns Hopkins to see if I could have a second round of neurosurgery. First, the neurosurgeon, without even meeting me, just looked at my records and said “He doesn’t need the test.”, which was Grid monitoring. The neurological doctors did eventually have a meeting about my results from the EMU. They said that it would be “Too Risky”. I keep thinking, if Grid monitoring is too risky, why didn’t they just use the MEG monitor? Which doesn’t require neurosurgery?


    Comment by David Jensen — November 4, 2018 @ 12:01 PM

    • I find that the doctors go for the procedures and meds, not exactly a cure.

      It’s a matter of money, not medicine.

      And the indifference that results is staggering.


      Comment by Phylis Feiner Johnson — November 4, 2018 @ 1:17 PM

  18. On #4, your article says, “The good news is that Obamacare requires doctors to disclose in a public database any gift worth more than $10 that they receive from pharma reps.

    Until next year, when the provision kicks in, the NPA counsels doctors to opt out of the AMA database.”

    Is that still true with Trump’s changes?


    Comment by Sandy — November 4, 2018 @ 1:28 PM

  19. You just confirmed what I already knew. A good dr. That will listen and do the best they can is hard to find. I seen a specialist that was an allknowing dr. He just pushed drugs ” this will help” that’s all that was said. My fault for trusting that it was safe with no side effects. That drug was Keppra. Need I say more . After that I don’t trust any of them.


    Comment by Richard — November 7, 2018 @ 5:20 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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