Epilepsy Talk

Anti-Epilepsy Drugs Lose Effectiveness Over Time… | August 6, 2018

It may be the dose prescribed…the type of epilepsy you have…even something as simple as your age or weight.

But research shows that, over time, the effectiveness of your anti-epilepsy drug may decline.

Almost all first, second and third-generation epilepsy drugs lose their efficacy after prolonged treatment.

Perhaps it’s because your metabolism builds up a tolerance to the drug. And ramping up the dosage can work.

Or it may be a functional tolerance where your brain receptors have become resistant to the drug. In that case, a change in medications may help. But whatever the cause, you’re not alone…

Patients showing tolerance to traditional drugs:

A critical review by Dr. Wolfgang Loscher and Dr. Dieter Schmidt shows that repeated administration of anti-epileptic drug (AED) therapy has diminishing results in preventing seizures in epileptic patients.

In clinical trials, the number of patients remaining seizure-free declines over time with prolonged treatment.

This review explores how acquired tolerance, the adaptive response of the body to foreign substances, as opposed to innate tolerance (which occurs in patients naturally resistant to certain medications) is responsible for this diminishing effect.

The risk of developing a tolerance to AEDs was traditionally thought to be small.

Loscher and Schmidt, however, conclude that while AED tolerance is not a serious issue for most sufferers of epilepsy, it is a significant aspect of treatment in some patients.

A few may even develop a cross-tolerance to similar medication. This “multi-drug resistance” is of serious concern to patients with medically intractable epilepsy.

The findings directly conflict with the treatment method many doctors are currently using…

It is standard practice to increase AED dosage until adequate seizure control is obtained. However, this protocol presents a number of issues.

The threat of medication tolerance is generally overlooked, as is the idea that epilepsy can be a progressive disease and does not develop at a fixed rate.

Further, patients may acquire a tolerance to some effects of a particular drug, but not all.

Loscher and Schmidt have spent decades studying the effects of AEDs, however, Loscher believes that AED tolerance is a topic that has yet to be fully explored, and that more long-term clinical trials are becoming increasingly necessary.

“Despite the convincing experimental evidence,” says Loscher, “tolerance to the effectiveness of AEDs seems to have been forgotten.”

Research is currently being done on the effects of placebo and conditional tolerance (a mental, conditioned-response effect that the mind has over the body).

Doctors are also studying the effects of lower initial and target doses of AEDs.

The possibility exists that many patients are being over-medicated from the start, posing a significant challenge to doctors and scientists working toward effective seizure control.

This study was published in Epilepsia magazine.  Epilepsia is published on behalf of The International League Against Epilepsy (http://www.ilae-epilepsy.org/) the world’s preeminent association of physicians and other health professionals working towards a world where no person’s life is limited by Epilepsy. Its mission is to provide the highest quality of care and well-being for those afflicted with the condition and other related seizure disorders.

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  1. Good report Phylis, as I never knew there was any ILAE. I just like to know if the ILAE is to be like the NIH said to me they were when they were suppose to use my condition & my experiences to the total treatment/s to control or stop seizures, but like all other doctors I had in years previously, the same type of medical care was offered with my brain being a drug disposal for BIG PHARMA & NIH numbers of approval by doctors there on all the AED’s they use every day there. The problem I had was having to take the drugs at 7 months old & all through High School to which my brain never could ever become a normal brain after 17 to 20 years, considering the average human brain in the 1970’s took 15 to 18 years to develop, based on M & F growths over 40+ years ago. Today with all the EXCITOTOXINS that are in everything besides foods & drinks, the brain experts say that today it can take 25 to 30 + years to have 100% FULL brain development for an average human brain. So figure for those with seizures, 30 to 45 years to have a normal brain IF AED’s allows that to happen, plus the ASPARTAME’S MSG’S, & alike, along with all cell & smart phones & other tech devices that were never something to worry about before 1980. People & neurologists never take all those things in account t& to consider that today all the brain conditions we have so much more of than in the years & decades that people had & seizures / epilepsy & other brain conditions,before 1980. Look at all the NEW diagnosis of names of diagnosis you never heard of in the 1980’s but since the 1990’s it’s like all the flood gates of brain conditions is never going to end, thanks to all I mention that we never had in the 1970’s & decades before then. VACCINES though have always been around since the 1950’s & they’ve become more unsafe every 5 to 10 years, as had drinks & foods became more toxic to brain health & alike, since the 1960’s when CODEX ALIMENTARIUS . became the law and then FFWD >>> now to THE DARK ACT. All I can say ”Somebody better be fearing God”. from making a world of 10 million with seizures in 1975 to FFWD >>> to 2018 & closer to an Epilepsy world of 65 to 70 MILLION people with seizures today.

    Liked by 1 person

    Comment by CD — August 6, 2018 @ 6:37 PM

  2. Don’t forget that not everyone is tolerable to certain medications- not just old, but even the newer ones. New medication doctors start me on often seem to have worse effects than helping prevent seizures.
    Newer meds need more research testing before doctors administer it .

    The DPT vaccine that was required in infancy- the Pertussis caused the reaction bringing brain damage from a quick loss of oxygen to the brain, hence, my Epilepsy.

    Yes. Medically innate- Refractory Epilepsy. (Drug resistant) Has this been given any study? Uneducated people always think of Epilepsy as being the ‘thing’ where people pass out, etc. They need full education about it.

    Liked by 1 person

    Comment by Karen — August 6, 2018 @ 7:33 PM

    • Point well taken.

      Newer drugs do need the research of older established drugs.

      As for refractory epilepsy, there have been dozens of studies with no answers.

      Except surgery. Sometimes a positive option, sometimes not a viable option at all.


      Comment by Phylis Feiner Johnson — August 6, 2018 @ 7:46 PM

      • Karen,
        My brother’s seizures began at age 41 and I have read tens of thousands of research articles on how he could have suffered the hypoxia that has caused his hippocampus to atrophy, but this is the first time that I’ve seen a link to vaccines. I’ll certainly be exploring more on the subject.

        Thank you for bringing it to our attention . . . and if you would be so kind, please tell me your age. I do not know when my brother might have received his DPT or other vaccines, but he was born in 1959.


        Liked by 1 person

        Comment by Paget Bridges — August 7, 2018 @ 1:50 PM

  3. I think the greatest difficulty related to meds is when the MD’s don’t take the time to really listen when the patient begins to express concerns related to the side effects or the ineffectiveness. I don’t know what is worse, having the emotional/ psychological side effects or being limited in working (because of the safety risks when working in the medical field). Do these MD’s ever go to the school of hard knocks & actually learn to listen to what the patient is saying? I really wonder if they do!

    Liked by 1 person

    Comment by Maire Archbold — August 6, 2018 @ 11:30 PM

    • You’re right. Many times doctors’ solutions are just to ramp up the meds without any investigation (like bloodwork), to see how they’re working.

      And yes, they’re on one side of the table and you’re on the other. At their mercy. (Not to sound too dramatic.)

      That’s why you have to be your own advocate.

      Keep track of your meds and seizures, so you can show your doc what’s going on. Take charge.

      One diary which you might find helpful is “Seizure Tracker” https://www.seizuretracker.com/

      I hope it works for you.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 7, 2018 @ 8:39 AM

  4. I’m getting sick from my meds Tegretol. Bone loss and a rash. But my Neurologist told me that it’s the safest med.?

    Liked by 1 person

    Comment by rusty.hanawalt@yahoo.com — August 7, 2018 @ 12:40 AM

    • This happened to me too,I was extremely sick from taking this medication I unfortunately suffered some of the severe side effects.The trouble is doctors don’t listen to their patients.I hope you can get your Dr to listen and consider changing your meds.
      I wish you all the best💗

      Liked by 1 person

      Comment by Berenice John — August 7, 2018 @ 4:23 AM

    • Rusty, you might consider a second opinion or a new doctor altogether. This does NOT seem right.

      Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

      This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.

      NOTE: The National Association of Epilepsy Centers (NAEC) provides a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy. http://www.naec-epilepsy.org/

      2018 Patient Recommendations for TOP Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors


      Good luck!


      Comment by Phylis Feiner Johnson — August 7, 2018 @ 8:43 AM

    • What your Neurologist is telling you reminds me of what one told me years ago. He had me loaded up with Dilantin, and it was doing nothing but making me feel miserable. At my last appointment he came into the room, and before I could say anything, he said “Well, I guess that’s the best we can do. You’re just going to have to live with it.” I said “What about the side effects?!” He just looked at me and said “OH, your going to have to put up with those too.” As I was leaving the office with my Mom, I said to her “Well, I guess that’s the last time we’ll be coming out of that door.”
      You do need to get a second opinion, best yet find a neurologist who will take how you’re feeling into account.

      Liked by 1 person

      Comment by David Jensen — August 7, 2018 @ 11:44 AM

  5. Who was your intended audience for this particular column? I assure you only the epileptic, rather than a doctor or reasearcher or the results of a clinical trial can determine how their anticonvulsant is working no matter how long she has been on it. Thank you for the article.

    Liked by 1 person

    Comment by Susan — August 7, 2018 @ 12:53 AM

    • Yes Susan, my intended audience is the patient.

      I believe he/she alone knows how their body is acting and reacting to a med (or a combination of meds).


      Comment by Phylis Feiner Johnson — August 7, 2018 @ 8:46 AM

  6. Science advancing to the point of eradicating polio, syphilis, malaria, AIDS,,, & many life-threatening hardships in just one last century, the brain has got to be a very difficult organ to cure, millenniums of struggle to threat Epilepsy continues to be overwhelming ordeal to stop seizures.
    If seizures are just intermittent electrical short circuits temporarily malfunctioning the brain, one wonders what’s science missing from defusing the short circuit from the outset & finding permanent relief to cure Epilepsy/seizures?
    Having tried various medications, I always wondered in the age of space engineering & travel, how did science failed to cure millenniums old brain malfunction, Epilepsy.
    Then again, I’m NOT expert in medical science nor health care industry.

    Liked by 1 person

    Comment by BahreNegash Eritrea — August 7, 2018 @ 1:51 AM

    • Yes Gerrie, you do have to wonder.

      As the saying goes; “They can send a man to the moon, but they can’t cure epilepsy.”


      Comment by Phylis Feiner Johnson — August 7, 2018 @ 9:01 AM

  7. i have to wonder the link between the foods we consume and the increased diagnosis in Epilepsy. all the chemicals we put in our bodies, and who benefits the drug companies as always just like with diabetes and heart diseases …cancer….? they are getting richer and richer why would they want a cure

    Liked by 1 person

    Comment by LizF — August 7, 2018 @ 2:30 PM

    • In my humble opinion, most foods are poison, loaded with chemicals, preservatives, food dyes, etc.

      Notice how conditions (like epilepsy) have advanced in the present generations?

      I agree with you. Follow the money…

      I don’t think it’s a coincidence that the BIG drug companies, the very people who are theoretically supposed to be making us “well,” have vested interests in these same contaminated foods. 😦


      Comment by Phylis Feiner Johnson — August 7, 2018 @ 3:08 PM

  8. Very interesting article.
    I slipped out of control after almost 30 years. Changed dosages and med types for the next 10. Then I regained control…ON THE ORIGANL DOSAGE AND MED. I have been under control for the last 3 years. (Go figure).


    Comment by Mark Thompson — August 10, 2018 @ 8:35 AM

  9. Phylis Feiner Johnson, if the only downside to anti-convulsant medications was issues associated with memory problems, however, no other side-effects, I would view this as not being too problematic. Frustrating in some ways, yes. However, not too difficult in other areas.


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:22 PM

  10. Phylis Feiner Johnson, even if I did not have Epilepsy, I would change very little about my life. What about you?


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:35 PM

    • Well, I am what I’ve always wanted to be, a writer.

      And blessedly, my epilepsy is 99% controlled with meds. (Lamictal and Klonopin.)


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 1:38 PM

  11. Phylis Feiner Johnson, I have heard of Klonopin. Is that a brand name medication or is that a generic medication?


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:43 PM

  12. Phylis Feiner Johnson, from the standpoint of Epilepsy medications losing what effectiveness they have overtime, what is the governing factor for this?


    Comment by Jeffrey Liakos — August 10, 2018 @ 5:44 PM

    • I think metabolism has a lot to do with it.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 7:00 PM

      • Phylis Feiner Johnson, as far as Epilepsy Talk is concerned, how were you inspired to create it? Is this based on your experience with Epilepsy that led you to this?


        Comment by Jeffrey Liakos — August 10, 2018 @ 7:37 PM

      • After a successful career as an advertising writer, I was inspired to “give back”.

        It was time.

        And understandably, epilepsy is a subject and a “cause” dear to my heart.


        Comment by Phylis Feiner Johnson — August 10, 2018 @ 10:15 PM

  13. Phylis Feiner Johnson, I know that medication can be a lifesaver, literally. However, with the harsh side-effects reportedly associated with some of them, is that not all the more reason to consider natural remedies whenever and wherever possible?


    Comment by Jeffrey Liakos — August 12, 2018 @ 4:17 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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