Epilepsy Talk

12 THINGS YOUR DOCTORS WON’T TELL YOU… | October 13, 2019

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.

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.

1.) I GET PAID TO PRESCRIBE THIS DRUG FOR YOU.

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?

2.) THIS WILL COST YOU.

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.”

3.) YOU NEED THIS DRUG.

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.

4.) THERE’S A CHEAPER AND SAFER DRUG THAN THE ONE I PRESCRIBED FOR YOU.

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.

5.) THERE ARE ALTERNATIVES TO THIS DRUG.

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.

6.) THIS IS RISKY.

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.

7.) YOU REALLY DON’T NEED THIS TEST.

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.

8.) I’LL ALWAYS PUSH SURGERY.

“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.

9.) I NEED TO PERFORM YOUR SURGERY IN ORDER TO SATISFY MY QUOTA.

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?”

10.) I’VE BEEN DISCIPLINED.

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.

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.

11.) I’M A REGISTERED SEX OFFENDER AND VIOLENT CRIMINAL.

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?

12.) CHOOSE WISELY.

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/our-mission/ aims to reduce care that has no value.”

 

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Resources:

http://healthimpactnews.com/2014/big-pharma-hiding-dangers-of-cholesterol-lowering-statin-drugs/

http://abcnews.go.com/Health/Wellness/things-doctors-telling/story?id=16175754

http://listverse.com/2014/01/25/10-horrifying-things-doctors-dont-tell-you/

http://well.blogs.nytimes.com/2014/08/01/ask-well-do-i-need-a-measles-shot/?_php=true&_type=blogs&emc=edit_hh_20140805&nl=health&nlid=27745593&_r=0

http://drbenkim.com/articles-xrays.html

http://www.motherjones.com/environment/2013/02/5-things-your-doctor-should-tell-you

http://www.webmd.com/healthy-aging/features/doctor-may-not-tell-you

http://usatoday30.usatoday.com/news/health/painter/2008-09-07-your-health_N.htm

http://www.prevention.com/health/health-concerns/how-talk-your-doctor

http://www.prevention.com/health/healthy-living/patients-choosing-doctors-based-location-and-insurance

http://articles.mercola.com/sites/articles/archive/2013/03/24/modern-medical-errors.aspx

http://well.blogs.nytimes.com/2014/08/05/why-we-should-know-the-price-of-medical-tests/?emc=edit_hh_20140812&nl=health&nlid=27745593

 

 



70 Comments »

  1. WOW!

    Liked by 1 person

    Comment by Kathy S.B — October 13, 2019 @ 10:45 AM

  2. As a human CANADIAN FIRST NATION PERSON our traditional practices are finally beginning to be incorporated A VERY LOW LEVELS into our medical system. However I find looking from the outside in that centuries and centuries of our “traditional Knowledge” is still being disregarded because it doesn’t suit the “Pharmaceutical Companies” therefore leaves all of our health and life insurances at stake for us in terms of coverage”. Also it appears to be QUICKLY FORGOTTEN that our people helped doctor our civilization back to health once the “small pox” (which was imported) to “North America” by the people to who put all of our lives in danger and killed off THOUSANDS (if not millions of people of all nationalities) for the sole purpose of dominance of another people, and land and resources. On that note there are a GREAT DEAL of our TRADITIONAL PLANTS (because everything is made of earth) that we are not allowed to utilize to help us or our “TRADITIONAL HEALERS” help us help ourselves. Otherwise it voids our insurances we work so hard for. It’s like a “double edged sword”. Too bad there’s no way to incorporate VARIOUS COUNTRIES AND BELIEFS to help OVERCOME OR DOCTOR AND HELP EACHOTHER. Just a thought. Thank you Phylis and please have a very good day today 😊 I greatly appreciate you TAKE CARE 😊🙏🏼🦅💞

    Liked by 1 person

    Comment by Kathy S.B — October 13, 2019 @ 11:11 AM

    • Natural Herbal Remedies for Epilepsy

      https://epilepsytalk.com/2017/07/02/natural-herbal-remedies-for-epilepsy/

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 13, 2019 @ 11:18 AM

      • If I may can I please tell you about a time when I went into the pharmacy and actually asked the pharmacist if I could take a certain “Natural Remedy”? “TURMERIC”? No sooner did I finish saying the word and he responded with a VERY STERN “ABSOLUTELY NOT”!!!!!!! Some of our “Cultural Medicines” also are sage, mint and on and on. Food for thought. Thank you 😊

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 6:16 PM

      • “The major extract of turmeric curcumin has found to have antiepileptic effect according to recent surveys. It not only has no critical adverse effect, but also can protect patients from other AEDs severe side effects. It also makes it possible to gradually decrease the dose of AEDs in long-term combination therapy.” http://rcm.mums.ac.ir/article_7636.html

        Natural Herbal Remedies for Epilepsy https://epilepsytalk.com/2017/07/02/natural-herbal-remedies-for-epilepsy/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 14, 2019 @ 12:02 PM

      • Goodmorning Phylis 😊. That was EXACTLY WHY I WAS WILLING TO TRY IT MYSELF!! But I figured maybe I better stop and look a little more seriously at what I’m ingesting before I ingest it. That kind of left me scratching my head!! Maybe now I will try it. Lol there’s really no other way to go except up 😘. Please have a very good day today and know you are VERY APPRECIATED!! 😊🙏🏼🦅💕😘

        Liked by 1 person

        Comment by Kathy S.B — October 15, 2019 @ 12:47 PM

  3. There are WAY MORE!! But the problem is the INSURANCE COMPANIES WILL NOT ACKNOWLEDGE OR ALLOW REIMBURSEMENT FOR THOSE DRUGS!!

    Liked by 1 person

    Comment by Kathy S.B — October 13, 2019 @ 11:23 AM

    • Every time I receive my notice of accepted meds, the list gets shorter and shorter.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 13, 2019 @ 11:32 AM

      • I apologize if I sound abrasive Phylis 😘. That is not my intention. My intention is to let the everyone know “we are all in the same boat so maybe we should all start helping eachother their best way possible. I.e. such as yourself Phylis on informing the world (pharmaceuticals, doctors, epileptics, families and friends) about the positive and negative effects of our lives on us as epileptics. Now maybe it’s time for everyone else to help as well. Talk minus action helps anyone anywhere except for the pharmaceutical companies. Everything starts from one person 😘

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 11:44 AM

  4. Great article! My Gastroenterology specialist recently said, before she did the bloodwork for a possible autoimmune disorder or parasites, that “if the HIDA scan shows something wrong with the gallbladder, it’s surgery right away.” Now that she ordered that bloodwork on the 9th and it can possibly take 17 days to result I doubt she would feel the same way. I think she would postpone it until I get the bloodwork back at least. I came down with Pancreatitis recently and I suspect that is from my seizure medications (Topiramate and Levetiracetam). Those do list them as rare side effects in Post-marketing reports, but my Epileptologist is denying the Post-marketing reports and saying “there’s no studies.”

    Liked by 2 people

    Comment by trekkie80sgirl — October 13, 2019 @ 2:34 PM

    • Beware of doctors wielding surgical knives!

      And I guess you’ll have to educate your epileptologist about the post marketing reports.

      One of the things that fries my shorts is that docs don’t stay current with protocols, procedures, and drug news.

      Not to mention breakthroughs or anything out of the box. (Literally!)

      If you’re in a teaching hospital, maybe you get a chance to experience the latest and greatest drugs and technologies.

      But how many of us experience that opportunity?

      P.S. They were going to take out my gallbladder for a KIDNEY infection. I was all prepped for surgery, until the head of urology peeked his head in to check out the scan. He said, “What a lovely gallbladder you have?” 🙂

      Like

      Comment by Phylis Feiner Johnson — October 13, 2019 @ 3:28 PM

      • I actually asked my General Practitioner to “PLEASE JUST SEND ME TO A GASTROENTEROLOGIST🙏🏼🙏🏼”. She sent me to and “internal specialist”. Lol my problem is my stomach why would I be going to an internal specialist when I have lived with this my whole life? And then I wait to a few months for an appointment for a neurologist. I have hard time trying to understand all the fears that come with every test. All I keep thinking about is my husband and children 💕🙏🏼🦅😇🙏🏼❤️❤️❤️❤️❤️. I WANT TO BE HERE FOR THEM NOT THE OTHER WAY AROUND (maybe). 😘

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 6:23 PM

      • Oh gees

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 6:23 PM

    • Oh don’t you wish they worked together from the get go!! I must admit THIS IS HELL!!!!! The pain and the the rest of the negative effects and THE BLEEP BLEEP SPECIALIST (I swear) ORDERED THE WRONC KIND OF XRAYS TOO!!!!!!! At least on me!! As I sit in pain for another month WAITING FOR MY NEXT APPOINTMENT AND AFRAID TO DRINK ANYTHING!! NEVERMIND TRY AND EAT!!!!!!! Yup even on “CANADIAN THANKSGIVING”. P.S. good thing the thanksgiving dinner is at my Mother in-laws house!! Lol As my oldest daughter is in emergency and I can’t even go be with her!! Unreal!! I wish they could see there to her, but I’m in too much pain as well!!!!!

      Liked by 1 person

      Comment by Kathy S.B — October 13, 2019 @ 6:25 PM

      • I definitely wish they would talk to each other more. The allergist and Pulmonary specialist worked together to think up a plan when I noticed I have high eosinophils. Some seem to be more open-minded than others. While others just have a bit of a god complex and think they know everything. I think it was a smart move when the Nurse Practitioner asked the Gastroenterology doctor who did my EGD what other tests she could do. I wouldn’t have thought about parasites or an autoimmune disorder with the Pancreatitis. I hope I can get her on board to help have the discussion with my Epileptologist, if it is in fact the medications causing it and nothing else. My Internal Medicine doctor/primary told me I should talk to the doctors who prescribe my medications about the Pancreatitis.

        Liked by 2 people

        Comment by trekkie80sgirl — October 13, 2019 @ 10:21 PM

      • Wow!! I thought the “internal specialist” wrote those prescription and the general practitioner followed the specialists orders? I HAVE TO AGREE WITH YOU THIS IS THE MOST PAINFUL THING IN THE WORLD!!!!!!! And HURTFUL NOT ONLY PHYSICALLY BUT EMOTIONALLY AS WELL!!!!! I TRUELY feels like a “YO YO”. Please find out what’s wrong!! And I will DO MY BEST FOR MYSELF THEN WE CAN PUT OUR HEADS TOGETHER!! 💗💕💞🙏🏼😘

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 10:34 PM

      • I am starting to think the medication does a number on our stomachs, liver and kidneys!! Because I have NEVER EVER BEEN OVER 170 pounds in my whole life or felt like a “walking helium balloon”!! 😢. Maybe there needs to be a complete communication between all of the doctors that way there’s no miscommunication or overlap of tests!! Please be well Trekkie and stay as comfortable as possible!! 😘

        Liked by 1 person

        Comment by Kathy S.B — October 13, 2019 @ 11:16 PM

      • LOOK UP “SEROTONIN SYNDROME” on MAYO CLINIC!!!!!!! I PROMISE YOU WILL FIND IT VERY INTERESTING!!!!!!! 😘🦅💕😘

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 12:37 PM

      • “Significant changes occur in peripheral serum serotonin levels following generalized (nonfocal) epileptic seizures, with inverse associations identified between serotonin levels and seizure duration. These findings possibly suggest a role of serotonin in post seizure recovery, according to a prospective, multicenter study published in Epilepsia.” https://www.neurologyadvisor.com/topics/epilepsy/significant-changes-in-serotonin-levels-observed-following-epileptic-seizures/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 20, 2019 @ 12:49 PM

      • They maybe VERY SURPRISED HOW MANY OF US EPILEPTICS ARE EXACTLY THE SAME WAY!! ALL THIS INFORMATION FOR ONE PHYSICIANS PRIDE!!!!!!! When all it takes is one multi facetted group of people from ALL MEDICAL COMMUNITIES AND EPILEPTICS AND LOVED ONES!! What a waste or maybe the MEDICAL COMMUNITY SHOULD CONSIDER RE-EVALUATIONS OF THEMSELVES AND THEIR PRACTISES ON EPILEPTICS!! And include us in the decision making process. They maybe surprised to learn something from us 😘

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 12:57 PM

      • It’s like going to the hardware store to buy milk! 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 14, 2019 @ 11:10 AM

  5. Thank you very much. You’ve done good—most of this is common sense, however, who really defines what is common sense. I have been dealing with seizures for almost fifty years.

    Liked by 2 people

    Comment by William Lipkin — October 14, 2019 @ 4:34 AM

  6. I’m UK, with the NHS paying for everything, but some of those points have come up with us, like doctors being paid for using a new drug, by the time they reach consultant level, I’ve often wondered where they get all the big perks, saw a neuro private as I needed instant help, couldn’t wait for a NHS appointment, his cheque was sent off to his house in our most expensive, top notch area. With all his bad care, where did he get that money, bad care included putting 2 heavy weight security gards on me when I had a seizure in his clinic, he couldn’t control it (I have pnes, but he thought it was uncontrolled epilepsy and wouldn’t listen to my queries about weird effects) and panicked me driving me over the edge, into fight or flight

    Liked by 2 people

    Comment by Gail Barry — October 14, 2019 @ 5:25 AM

    • Gail, it’s a shame that you have to take your health into your own hands, instead of going to the NHS.

      And paybacks are a bitch.

      Especially as you pay out of the planet fees for a doctor who’s already on the take.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 14, 2019 @ 11:13 AM

    • You know it’s a shame that we epileptics have consistently have to feel as though we are always in the fight or flight mode and not by our doing either!! I AM SO SORRY THIS HAPPENED TO YOU!! 💞

      Liked by 1 person

      Comment by Kathy S.B — October 20, 2019 @ 1:30 PM

    • I AM SO SORRY TO HEAR THAT HAPPENED TO YOU Gail!!!!!!!! 💗

      Liked by 1 person

      Comment by Kathy S.B — October 21, 2019 @ 6:04 PM

  7. Even if everything looks good, check out the drug’s “side effects” online, or ask your pharmacist, or both. I was recently given prednisone eyedrops for an inflammation. I didn’t ask, I didn’t check, it didn’t occur to me. Prednisone can cause seizures even in those of us who are not seizure-prone. Luckily I thought to check, finally, and to lower the dose on my own (it was Sunday, early, not a lot of help available). If you want to live to fight another day, please act on your own behalf. Don’t expect the medical profession to take care of you.

    HoDo

    Liked by 2 people

    Comment by HoDo — October 14, 2019 @ 12:13 PM

  8. Why Your Pharmacist is Your Best Friend

    https://epilepsytalk.com/2013/02/20/why-your-pharmacist-is-your-best-friend/

    Like

    Comment by Phylis Feiner Johnson — October 14, 2019 @ 12:31 PM

  9. Phylis, Thank you for the very excellent informative article, rooting for the voiceless & helpless patients, desperately seeking healing from medical hardships.
    Just like the food industry & restaurant businesses have annual regional or state inspections to approve their business license, I would think it would have been more helplful to the patients, if there was REGIONAL & STATE OVERSIGHT COMMITTEE, annually investigating the medical treatments & procedures, meticulously supervising the hospitals & doctors for all the services they claim to provide to the desperate patients in need of medical assistance & healthcare, before the patients ending up to live throughout or die from unnecessary treatments.
    I know of two young woman who died trying to deliver babies through C-SECTION in the local hospitals, while my mother delivered nine children in her own home aided by midwives around the neighborhood, without needing the hospitals, doctors, health insurance & medical bills.
    In fact, hospitals, doctors & C-Section are still NOT common procedures nor venues to deliver babies in her village, where women has been traditionally delivering children since Biblical times.
    I suspect the poor helpless woman who died to deliver babies, had no one to vouch for them in the “operations room”.
    Therefore, it’s long overdue for the government to get involved in caring for the helpless & voiceless patients under the hospitals/doctors roof.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — October 14, 2019 @ 2:15 PM

    • I think there are oversight procedures, but they’re in a very few hospitals. Many function under the radar.

      As for C-sections: “Women in the United States are giving birth by Cesarean section far more often than is necessary to keep maternal and neonatal mortality rates low.

      Around the world, a C-section rate of approximately 19 percent seems to be ideal for the health of both women and newborns, according to an analysis of childbirth in 194 countries published Tuesday in The Journal of the American Medical Association.

      In the United States, however, about one in three births happen by C-section, a rate that has risen dramatically over the past few decades, from 5 percent in 1970 and 20 percent in 1996…”

      https://www.statnews.com/2015/12/01/cesarean-section-childbirth/

      Convenience or necessity?

      Like

      Comment by Phylis Feiner Johnson — October 14, 2019 @ 3:36 PM

      • I think more convenience, and the rates in Canada for C-sections are 27% of live births. Still too high. Sometimes it’s the physician booking the cesarean as soon as a pregnancy is diagnosed so they likely don’t have to do a midnight delivery, Or, the mother wants the baby delivered in a certain timeframe, whether baby is ready or not.
        My daughter, a Canadian, is married to an American and they had a child recently. Their obgyn in California scheduled a c-section without even consulting with them about what they wanted. Guess what? For half the price she had a midwife and doula attend her home birth. And they were only there to make sure things went smoothly. My daughter and her husband did everything and I mean EVERYTHING themselves and had a full term healthy baby girl. (proud Gramma here).

        Liked by 2 people

        Comment by Marlyn — October 14, 2019 @ 11:53 PM

    • Thank you Gerrie for acknowledging that. Lol I’m sure if all of us go into one person’s appointment with them maybe then we will all be heard!!

      Liked by 1 person

      Comment by Kathy S.B — October 20, 2019 @ 1:34 PM

  10. And if I’m not wrong here, aside from the recovery time, a C-section costs about 50% MORE than a vaginal delivery.

    https://www.thecut.com/2018/12/how-much-does-it-actually-cost-to-give-birth.html

    Like

    Comment by Phylis Feiner Johnson — October 15, 2019 @ 10:18 AM

    • I think they should start fining or prosecuting doctors who are performing medically unnecessary c-sections. It is taking away surgical space and time for other necessary procedures.

      Liked by 1 person

      Comment by Marlyn — October 15, 2019 @ 4:15 PM

      • If I may can I please maybe allow for a different spin on things? Thank you. I had an emergency c-section on my second child. She 32.5 weeks and my placenta and uterus ripped apart) I had not choice. My last child (to whom I was never supposed to have by medical doctors standards) for some reason I felt I better have a c-section with!! Turned out that (ENDED UP BEING AN EMERGENCY C-SECTION) almost cost me!! It was a gut decision on my part and ended up being a lifesaving one. I never knew I was in labour? I thought it was just one of my normal stomach aches so I didn’t worry about it. Turned out I was in labour. Had a full term delivery, but my baby was already engaged and I had a cyst in my birth canal that would have ruptured leading me to bleed to death. It took 5 AMAZING GOD SEND DOCTORS AND NUMEROUS NURSES AND EMTS TO PULL HER BACK OUT!! And her and I were able to both live 😘. The ultrasound never picked up the cyst until I was opened up and the doctors seen it!!!!! Just some food for thought. Yes the ultrasound was just a well prior

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 3:20 PM

      • Wow. What you’ve been through, Kathy.

        Like

        Comment by Phylis Feiner Johnson — October 20, 2019 @ 3:23 PM

      • Meh!! I had to laugh because when I seen all the doctors running In and they told my husband to sit down at my head and covered us I told my husband “what’s happening? They told 20 minutes!! Howcome it’s 2 hours later? (I couldn’t move) they said I had a baby girl 🙏🏼🦅😇💗. When they asked for a name my husband jumped up and gave it to them lol. I was just wondering why I never heard her cry?! My husband said “she’s just looking around” lol. She never cried. Later the doctors told my husband “LUCKY THING WE LISTENED TO HER!!!!!!!” Then told me I had the New Years baby 😘😘. I told them “I thought it was a normal stomach ache that’s why I never said anything. I’m sorry”. Lol 😂 they all got their “ROOT BEER AND LIQUORICE CIGARS 😂😃💞🙏🏼🦅😇😘

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 3:33 PM

  11. You got my vote there! 🙂

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 15, 2019 @ 4:43 PM

    • I was NOT trying to divert from the main subject, when I was referening to the deadly example of the C-Section I pointed out in my remarks to the “12 things your Doctor won’t tell you”.
      I meant to point out to one of the many medical fraud & corruption threatening the public safety for luck of strict legal supervision, observation, scrutiny, responsibility, accountability & enforcement.
      It’s just incredible to imagine the FDA going after restaurants & liquor stores, while Doctors & hospitals are making fatal & mortal decisions over voiceless patients in desperate need of urgent & emergency medical aid.
      It’s long overdue for the powers of the day who claim to represent the PUBLIC SAFETY, to prove that protecting & serving the public is far more nobel cause to stand up for, than the BIG PHARMA & CORPORATE HOSPITAL INDUSTRY election funds they crave for & make profit from.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — October 16, 2019 @ 12:43 AM

  12. Just like what they did to all of the marines, soldiers, nurses an doctors who are part of all trying to help in the active duties by the “Malaria Injection” they are all made to have here in Canada. Now there’s a lawsuit against the governments who allowed our protectors to be used as “LAB RATS” for the government and international drug companies coffers

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 1:06 PM

    • 😦 😦 😦

      Like

      Comment by Phylis Feiner Johnson — October 20, 2019 @ 1:08 PM

      • IT IS VERY UPSETTING BUT TRUE!! So now I wait to be seen by another ARROGANT NEUROLOGIST ONLY TO BE GIVEN PROBABLY MORE PILLS!! And have other things I WORKED SOOOO HARD FOR (but NEVER USE UNLESS ITS A REAL EMERGENCY) “my drivers license” to be taken away!! Even though I haven’t had a seizure in over a year and all the medication that is being prescribed to me is causing my issues and they can’t figure it out when they crated this mess!! Funny how I caught it because I could feel something was really wrong and went to my family doctor who pushed me on to other specialists in other fields and they can’t all put their heads together and work as a team like they are supposed too!! Sorry Phylis I didn’t mean to rant I just can’t believe it myself and wanted you to be knowledgeable. 😊💗

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 1:23 PM

  13. Epilepsy and Driving (A Small Rant)

    https://epilepsytalk.com/2014/03/16/epilepsy-and-driving-a-small-rant/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 20, 2019 @ 1:38 PM

  14. Sometimes it’s a necessity on the highway with another person. Or emergency with a loved one. But most of all just a form of independence know we too can accomplish something for ourselves and never use it, but at least have it IF NEEDED!!

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 1:49 PM

    • I got a passport just because I needed it for identification without a license!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 20, 2019 @ 1:51 PM

      • I hate to say this, but not everyone could afford one. Especially if they already have to pay out of pocket for almost everything and medication they have. Then comes the family and bills entailed

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 2:14 PM

      • Also not everybody can look at a monitor or have the means of even accessing internet. We are all human why can’t we treat eachother with caring and compassion for one another and all our future endeavours

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 2:16 PM

      • After paying for all of the medication I apparently need, but can no long use even I couldn’t afford to get a passport. I’m still saving for that one. It’s sad how the get paid thousands of dollars for my/our sufferings and we are left to pay for medication we not only can’t use, but hurt us even more in the end. But for its worth I paid, I took, was taken off, put on a water restriction diet and still can’t eat and have to keep going back to many different types of specialists for what I know it already is caused from. Please make yourself knowledgeable of all of the tests, why you have to have them and (in my case) Educate and others. Share information. Makes me wonder now what? We have almost become just as professional as the professions who care for our healthcare if not more knowledgeable.

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 2:49 PM

      • Kathy, you might find these articles interesting:

        Three Anti-Seizure Diets That Could Change Your Life…

        https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

        Beyond EEGs — Diagnostic Tools for Epilepsy

        https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 20, 2019 @ 2:58 PM

  15. Nice. I’m going to look into that!! Thank you. However on the flip side sometimes we try so hard so we could be well and be able to just have one. That doesn’t always mean we have to use it. Plus you have to remember if diabetics could get one why can’t we? Either way for us as epileptics sometimes that is our accomplishment just to ourselves 😊

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 2:08 PM

    • I just rewrote the “Rant” article, so it won’t show up right now.

      Part of it says:

      “If I had a pacemaker, do you think they’d take my license away? Or cancer, diabetes, etc?

      Would they revoke my license if I had a car accident? Not likely.

      But nooooo. I have epilepsy, so I must be punished.

      Because I drove my car into the back of my garage wall.

      Did I hurt or endanger anything (other than my garage)? Well, I did hurt myself, when the airbag almost crushed me.

      Would 6 months without a driver’s license suddenly make me a “safe” driver?”

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 20, 2019 @ 2:52 PM

      • I JUST SO THANK YOU FEOM THE BOTTOM OF MY HEART!! Funny how I could be allowed to coach hockey, baseball, basketball, track and field, be part of my western heritage (horseback riding), referee soccer, sit on school parent councils, on and on and it can never be taken away from me. Yes I did almost drowned from a seizure in a river (my grandma caught me down river), jump off bridges and list goes on. All with epilepsy and the doctors (who are supposed to help me) are adding on to medication that simply causes a stomachache for a lifetime and only care about the money not the person/people. Yet a simple person with epilepsy already knew decades ago what was happening to their body and are still not heard. And it was in one article. Lol they should have named the medication “SEROTONIN stuck in flight or fight mode medication”. I like the rant because at least it gets out of you and me!! Thank you Phylis 👁❤️U!!!!!!! 😊🙏🏼🦅💞😘

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 3:08 PM

  16. Out of curiosity are we as “PATIENTS” allowed to record our meetings for future reference? As we speak with our loved ones and cherished friends 😘🦅💞

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 9:52 PM

  17. You can take notes during the appointment and it’s best to have another person go with you and take notes as a “second pair of ears”.

    They may have observed something you don’t remember.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 21, 2019 @ 11:50 AM

    • Lol I’ll just bring my family!! Then I don’t have to answer their crazy questions or deal with their drama. The neurologist could do that himself!!!!! Lol it’s a PRETTY BIG FAMILY!!!!!!! 😱😰

      Liked by 1 person

      Comment by Kathy S.B — October 21, 2019 @ 11:59 AM

      • Kathy, Thank you for sharing your experience & deep understanding of the ordeals of living with Epilepsy.
        I feel your arduous struggle for I understand where you’re coming from.
        I’ve been in your shoes for so long, I feel I became a hostage to the hospital industry, doctors experiments, pharmaceutical market, “legal” establishments/authorities & moving restrictions, all because of Epilepsy.
        Imagine being banned by the County Administration from visiting the same PUBLIC LIBRARIES you have paid your hard earned taxes for & you’ve been visiting for most of your life, for having seizures in the library?
        It’s sad to note that the hard-core criminals have more freedom to move around & score another heist than the innocent victims of Epilepsy, cherishing for normalcy in their lives.
        Obviously, there’s an urgent need for radical changes in dealing with Epilepsy.
        Let’s hope that something good will eventually come out from our struggle with epilepsy, hospital industry, political establishments & legal authorities.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — October 21, 2019 @ 3:10 PM

      • Goodafternoon Gerrie 😊💗. Thank you for responding to me I greatly appreciate you for doing so 😊. I completely agree with you!! However on the flip side there truly are medical professionals who do sincerely care and try their best to help us in anyway they can think of. I feel for all the professionals who are trying to assist people such and yourself and myself, but due to regulations brought upon them by the governments, industries and PROFESSIONAL CODES OF CONDUCT there feels as though they are bound to maintain confidentiality, laws and fines. We however are bound by oppressive mentalities and actions of those who feel as though they are held of a higher regard. Forgetting they need us in order to get there. The radical change seems to be of self righteousness of the all mighty dollar and not the person or people who help bring some of them into the universe we all share and are part of. They don’t think it will ever happen to them until it’s too late. Maybe there actually needs to be a respectful willingness to want to help one another be the best that we can be not only as professionals (doctors, lawyers, teachers, religious orders, governments of all areas municipalities, provinces or states and countries all together. Just as is, but not money. Sheer compassion, willingness to work with eachother to better one another in EVERYWAY possible. To live CONTENTLY together. THANK YOU FOR JUST BEING YOU GERRIE 💗😊. So you know and at least heard it once today you are greatly appreciated and I sincerely appreciate your kindness honesty 😊💞.

        Liked by 1 person

        Comment by Kathy S.B — October 21, 2019 @ 3:44 PM

      • Everybody belongs to somebody 💝. What if the tables were turned on that person had to rely on an epileptic to get them to the hospital because they couldn’t get there themselves or afford an expensive ambulance trip?

        Liked by 1 person

        Comment by Kathy S.B — October 21, 2019 @ 4:03 PM

  18. Banned from going to the library — a public place?

    Shame on them. (For that, and as you say, a lot of other things!)

    Like

    Comment by Phylis Feiner Johnson — October 21, 2019 @ 3:13 PM

    • Yes Phylis, Banned by the library supervisor handing to me official County
      “certificate” with all the county’s trademarks & letterheads, from visiting the same “public” libraries I’ve been going into for more than 30yrs, before & after I came up with seizures.
      The same goes for SAFEWAY grocery store, banned from shopping groceries, in the same supermarket I’ve been shopping for decades.
      Thanks to epilepsy, all of a sudden I’ve turned into a demon, for having one or two grandmal seizures in the library & the supermarket.
      😠😠😠!
      Thanks God, the Supermarket finally went bankrupt & shutdown. 👍!
      NOTE: Suing the County for discrimination with the very self-incriminating “certified letter” would have been worthy struggle for justice, but my priorities remain controlling my seizures before ending up entangled in legal hurdles.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — October 21, 2019 @ 3:56 PM

      • That’s why we have eachother 😊💗. It’s the stigmatism of ignorance. Sometimes all it takes is someone else OTHER THAN OURSELVES to make them aware or their ignorance. Or possibly even their own personal experiences to change their minds and attitudes!! Shame on them. I’m sorry to hear that 😔

        Liked by 1 person

        Comment by Kathy S.B — October 21, 2019 @ 4:23 PM

      • Oh Gerrie, I always admire you for your noble priorities. Instead of a lawsuit (which would have been tempting), you chose to get over it and go on with your life.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 21, 2019 @ 5:53 PM

  19. I’m refractory and people seem to freak when I seize, I give out card and tell them what to do ,I have focal awareness sz’s. Belinda

    Liked by 1 person

    Comment by Belinda — November 14, 2019 @ 11:30 AM


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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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