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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Resource:

http://www.sciencedaily.com/releases/2006/09/060911111533.htm


80 Comments »

  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 2 people

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

    • Sad, but true.

      Like

      Comment by Phylis Feiner Johnson — August 6, 2018 @ 7:40 PM

    • I had to MAKE MY DOCTOR AWARE OF THAT!!!!! I was SO INFURIATED that she didn’t even know!! As epileptics we have got to know our bodies and its reactions to the medication that are being given to us and why? I think what made me the most bewildered was the fact that as an epileptic I felt as though I wasn’t being taken seriously and therefore my concerns or voice wasn’t/isn’t heard now. Funny thing is it took a new doctor to come to town to FINALLY KNOW FOR SURE that I was having seizures opposed to the old one who kept telling my grandma and grandparents I was everything under the roof, but epileptic. I trusted my doctors because they had personal experiences with their own children (who were epileptic) and they cared and also had vested interest as well!! I still trust them, but one is no longer here 😥💔💔. I NEVER WISHED SO HARD FOR THEM TO PLEASE COME BACK!!!!!!! The other is retire now, but being from a small town I feel safe and secure still occasionally speaking with him IF I OR HE COULD!! 😊🙏🏼🦅😇❤️❤️😘😘😘😘😘

      Liked by 1 person

      Comment by Kathy S.B — September 10, 2019 @ 10:55 AM

      • Frankly, I think it’s a case of denial, on everybody’s part.

        And some docs, sadly enough, don’t have a clue.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 10, 2019 @ 11:07 AM

      • Or learning to humble EACHOTHER and ourselves to work as a team 😘

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 11:11 AM

    • You know what is LEAVING ME SHAKE MY HEAD ABOUT ILAE AND EVEN NIH? A doctor I’ve never seen in my life in emergency at night time was FINALLY THE ONE WHO TOLD ME WHAT THEIR SUSPECTING IS WRONG WITH ME!!!!! But he was also the FIRST DOCTOR TO EVER TELL ME “ILAE AND NIH DO NOT KNOW WHAT TO DO EITHER!!!!!!! Their trying to figure it out now because the doctors were taught that it’s all in the “epileptics head” that the epileptic was over reacting and making the stomach aches and numbness up. NOW THEIR ALL BEGINNING TO REALIZE THE EPILEPTIC WAS RIGHT AND THEY WERE WRONG!!!!!!! I almost wanted to hug him SO HARD!!!!!!!!!!! That poor honest sincere doctor!! Had to be the one to finally tell me what we all know after 5 times of having my gums shaved off in my whole mouth and a life of stomachaches that were so bad I couldn’t tell I was in labour!!!!!!! After I had my children my doctor told “you were in labour and you never knew?!”. My reply was “I get stomachaches WAY WORSE THEN THAT!!!!!”.

      Liked by 1 person

      Comment by Kathy S.B — October 13, 2019 @ 10:29 AM

      • OMG. You know, it was an ER Resident that saved my life!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 13, 2019 @ 11:15 AM

      • Yes NOW THE MEDICATION PROFESSIONALS are STARTING TO ACKNOWLEDGE WE WERE RIGHT FROM THE GET GO!! ONLU IF BIG PHARMACARE WOULD AS WELL!! The irony of it all!! 😘

        Like

        Comment by Kathy S.B — October 13, 2019 @ 11:22 AM

      • BIG Pharma is not in the business of curing patients. They in the business to make more money.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 13, 2019 @ 11:30 AM

  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 2 people

    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.

      Liked by 1 person

      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.

        Blessings,

        Liked by 1 person

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

      • Goodmorning Phylis and Karen 😊. Here in Canada I had to get a DPT needle (in Alberta, but I was actually born in Vancouver, British Columbia in 1970). There was a new “flu Vacation” quite a few years ago that I had (for a different kind of flu) and I never dropped, but HOLY DID I EVER FEEL LIKE I WAS GOING TOO!! The day after that shot had been given to my husband, myself and our children my oldest daughter (13-14 years old at the time) dropped in gym class!! She said she went numb in her legs and her arms and head felt really funny!!!!! However when I was younger we used to be given that shot in school around grade 4-5 and grade 9. I have to admit I DID GET VERY SICK FROM IT!!!!! Me and my husband were given our “booster shots” and I my “DPT” shot earlier last year. It made ME WONDER IF MAYBE MY ISSUES NOW ARE DIE TO THAT INJECTION!!!!! Because it wasn’t until I had it that MY SODIUM AND BLOOD PRESSURE AND SUGAR LEVELS DROPPED!! It has been ongoing since then!! Just food for thought. My other 2 children (oldest is a man 25 and youngest is a young woman 17) now and it let me feeling like I CAN’T HELP BUT WATCH THEM LIKE A HAWK BECAUSE OF IT!!!!!!! I just never said anything to anyone.

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 10:41 AM

    • Goodafternoon Karin 😊. That reminds me of when everyone first had the flu shot for the “ONE DEADLY FLU” going around!! Shucks I can’t remember the name of it. Anyways after we had our shots I was made to sit down with the nurses and they sat with me and watched me and asked what was happening and how I felt? I was okay with that because I would rather they really know than to cover it up and lie (plus they were my friends) 💗. Anyways the day after my oldest daughters school phoned and wanted me to go in ASAP because my daughter dropped in gym and couldn’t get up at all and then she was going in and out of a seizure!! Me and my husband went and because of what I go through with seizures I was able to help her and then take her into emergency and explain to them EXACTLY WHAT WAS WRONG WITH HER!! I won’t lie even I was in a tough spot running on adrenaline so I wouldn’t drop either!!!!! Whatever was in that shot ended making her and I have some form of “anaphylaxis shock”!! Ever since then I must admit I AM NERVOUS WHEN WE GO FOR OUR FLU SHOTS NOW!!!!!!! And I ALWAYS MAKE SURE WE ARE ALTOGETHER WHEN WE GO!!

      Liked by 1 person

      Comment by Kathy S.B — October 12, 2019 @ 3:12 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 2 people

    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 2 people

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

    • Goodmorning Maire 😊. MAYBE THEY DO!! But EVEN THEY FEEL JUST AS BAFFLED AND LOST AS WE “EPILEPTICS DO”! 😘🙏🏼🦅❤️😘

      Liked by 1 person

      Comment by Kathy S.B — September 10, 2019 @ 10:58 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 2 people

    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 2 people

      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

      https://epilepsytalk.com/2018/01/06/2018-patient-recommendations-for-top-neurologistsepileptologists-neurosurgeonsand-pediatric-doctors/

      Good luck!

      Liked by 1 person

      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 2 people

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

      • When I was on Dilantin, I got galloping gum rot, lost my hair and went into a semi coma.

        What did they do? Increase the dose! 😦

        Like

        Comment by Phylis Feiner Johnson — September 10, 2019 @ 11:13 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).

      Liked by 1 person

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

    • Goodafternoon Susan. It may not be such a bad idea to have a researcher or even doctors to hear and see this column. We all only strongest together and sometimes the eduataion May lead doctors and researcher to believe they know everything when really they only know a little bit 10 to 15 minutes every few months. Neither of us could help eachother if neither of us are feel superior to the other. We’re all humans and we all feel, have feelings, breath air and bleed red. Thank you and please have a very good day today 😊

      Liked by 1 person

      Comment by Kathy S.B — October 12, 2019 @ 3:21 PM

  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 2 people

    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.”

      Liked by 1 person

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

    • I apologize but I am an epileptic. On the flip side when I realize even science doesn’t know what to do next it leaves me wondering the same myself. It just appears to me that the doctors who finally may have a grasp on what could be done retire or are forced to retire before they are given a chance to TRY AND HELP OR JUST DON’T HAVE TIME because they are overwhelmed with so many patients themselves. Yes that does include general practitioners as well. Some really do LOVE AND CARE FOR THEIR PATIENTS 💕. However it appears to come down to actual listening, learning from all sides, practicing and asking questions with true heart and compassion. ❤️

      Liked by 1 person

      Comment by Kathy S.B — September 10, 2019 @ 11:09 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. 😦

      Liked by 1 person

      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).

    Liked by 1 person

    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.

    Liked by 1 person

    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?

    Like

    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.)

      Liked by 1 person

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

      • Are the 2 AED’s of Lamictal & Klonopin the Batman & Robin dynamic duo that work together for you rather than taking a hopeful1 SUPERMAN AED, that will stop seizures all alone ? I am not getting that SUPERMAN power with Lamictal XR & just wondered what other AED works best with it for certain seizure conditions. Needless to say if a neurologist knows this, they are never wanting to tell me about it since taking any of lamictal since 2000.

        Liked by 1 person

        Comment by C D — April 8, 2019 @ 8:40 PM

      • Yup, it’s Lamictal XR and Klonopin, for me.

        Happily, I’ve met my magical medical mix.

        (If there can be such a thing!)

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 8, 2019 @ 9:27 PM

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

    Like

    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?

    Like

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

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

      Liked by 1 person

      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?

        Like

        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.

        Liked by 1 person

        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?

    Like

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

  14. It may not always be that we are having seizure necessarily, but other parts of our bodies or neurological symptoms have changed with time. Some of the medication may almost (at times) feel as though they are working against our bodies and were not either being heard, believed or even the doctors may simply not know what else to do with us!! 💗

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 2:17 PM

    • I was in to see my Neuro today. I have really been a squeaking wheel about getting off of Aptiom for more than 2 years. He did have me start to take other meds, but their negative side effects were worse! I needed to go see another Neurologist (on a Worker’s Comp issue). He started me on a very low dosage of a different medication to address the pain factors (from the recent head injury). My Neuro is now having me use that medication instead of the Aptiom. As patients, we really have to be very educated about medications and their side effects… affecting our bodies, not the MD’s!! That includes a lot of praying & seeking God for wisdom in how to take care of His temples! Have a blessed evening! Shalom. Maire’

      Liked by 2 people

      Comment by Maire Archbold — September 17, 2019 @ 12:21 AM

      • Maire, you’re right. Only YOU know your body and you have to speak up.

        Or else seek another opinion.

        You were smart.

        And I value your proactive attitude.

        Because, if our docs aren’t willing to listen to us, what’s the point?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 17, 2019 @ 9:26 AM

  15. I agree. If it’s not working, then throw a little bit more into the equation!

    Like

    Comment by Phylis Feiner Johnson — September 7, 2019 @ 2:42 PM

  16. All the more reason why laws or at least attitudes regarding driving need to be looked at individually. I’ve gone periods without seizures and then suddenly started having them again needing to look at new medications.

    I probably should never drive again. It’s too scary. Yet, there’s almost a feeling of obligation to start driving after 6 months or a year has passed without having a seizure. It’s like you’re being too much of a burden on others if you don’t.

    Liked by 1 person

    Comment by Sandy Vandeventer — September 9, 2019 @ 8:48 PM

    • Just when you thought it was safe…

      I had been seizure-free for eons when I found myself going into the garage wall. (Not a pretty sight.)

      Was it a break-through seizure or the need for my meds to be adjusted?

      Well, after blood tests, it was determined that my Effexor was working at just 50% of its therapeutic level. 😦

      Like

      Comment by Phylis Feiner Johnson — September 9, 2019 @ 11:11 PM

      • Oh I am SO SORRY TO HEAR THAT PHYLIS!!!!! I knew I was down one time (pretty bad) and I had a very good friend of mine tell me “well at least there’s no where but up!! 😘”. At least you allow us the opportunity to get up and learn and get stronger, more educated and open to even wanting to do that!! THANK YOU FOR JUST BEING WHO YOU ARE AND DOING WHAT YOU DO FOR ALL OF US!!!!! I WILL ALWAYS GREATLY APPRECIATE YOU AND ALL THAT YOU ENCOMPASS!! 😊🙏🏼🦅😇❤️😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 11:16 AM

      • May I please ask what “Effexor” is? I’m sorry for my lack of knowledge in that area. 😊

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 11:19 AM

      • Kathy, Effexor is an anti anxiety med. I misspoke, it was Lamictal that was on the 50% level of effectiveness. Sorry.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 10, 2019 @ 11:22 AM

      • Thank you Phylis 😊. Kind of sounds like where I’m at with my medication now. After 41 years it is losing its effectiveness and almost “backfiring on me!!”. I just find myself WISHING MY OLD DOCTORS WOULD COME BACK OR OUT OF RETIREMENT!!!!!!! 🙏🏼🙏🏼💕💕”. After a few decades of having a person stake in epilepsy they seemed to listen to the patient and work with that patient to help them!! Lol 😂 MY VALUE WAS GETTING MY “DRIVERS LICENSE” lol even though I don’t drive 😂. It just gave me a sense of independence I never thought I would ever get. Almost a sense of achievement in a different way others JUST GOT!! 😘😘

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 11:29 AM

    • Actually I don’t really drive. I live in a small town so I really don’t need to and when I do I phone my friends or tell my husband

      Liked by 1 person

      Comment by Kathy S.B — September 9, 2019 @ 11:14 PM

  17. I’d say you’re one of the lucky ones.

    Here in sprawling suburbia, you can’t get anything without going 5 miles. (Each way!)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 9, 2019 @ 11:16 PM

  18. I used to play a LOT OF SPORTS AND COACH A LOT AS WELL!! One of the biggest things I used to tell the younger people on my team was “there is NO I in team because it takes all of us to work together to be able to win!! 😘”. I still stand true to that, but yes sometimes it’s is very difficult to remember and practice what I preach. I finally just gave up and realized JUST BE HONEST AND ASK FOR THAT IN RETURN!! 😘

    Liked by 1 person

    Comment by Kathy S.B — September 10, 2019 @ 11:57 AM

    • The same thing goes for support and advocacy. If we don’t advocate for ourselves, who will?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 10, 2019 @ 2:49 PM

      • True true!! But WHAT IF (in my case for example) they can’t simply find out what is happening to me then how do advocate without sounding negative if we’re feeling shrugged off ourselves? Not asking in a negative way, but in a way where we are REALLY TRYING to get better. Because first we have to get better and we don’t want to appear or sound like we’re being negative to get there. It’s just really hard!! It appear after (2 days) of FINALLY being on the full dose of Sodium Chloride my Chloride is in the normal range but not my sodium yet. One more bloodwork in the AM and once a week thereafter. Thank you Phylis.

        Liked by 1 person

        Comment by Kathy S.B — September 10, 2019 @ 3:25 PM

      • Sigh. I guess you can only educate, then advocate.

        Remember, medicine is a PRACTICE.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 10, 2019 @ 3:32 PM

  19. They brought the dosage of Sodium Chloride up to 9 pills a day from 6 today

    Liked by 1 person

    Comment by Kathy S.B — September 10, 2019 @ 6:46 PM

  20. It’s AWFULLY BLEEP BLEEP HARD!!!!! And nauseating!! I don’t know if it’s good or bad?! My Chloride is levelled out or good, but my sodium is still low

    Liked by 1 person

    Comment by Kathy S.B — September 10, 2019 @ 8:01 PM

  21. And I won’t be able to get into a neurologist for between 3-6 months

    Liked by 1 person

    Comment by Kathy S.B — September 10, 2019 @ 8:02 PM

  22. Goodmorning Phylis thank you 😊. Time to try and read some more. I appreciate the help and honesty 😘

    Liked by 1 person

    Comment by Kathy S.B — September 11, 2019 @ 10:51 AM

  23. Goodmorning Phylis 😃. So your aware it appeared my sodium chloride was dropping day by day. Now they want me to go off all of it. I guess I wait in line like you said 😊. Please have a very good day today and take care of yourself 😘

    Liked by 1 person

    Comment by Kathy S.B — September 12, 2019 @ 10:13 AM

  24. Yes your right!! Oh THANK GOD/CREATOR FOR WISDOM!! Lol time to try and eat more now lol maybe with MORE SALT!! Please have a very good day today and take care of yourself!! We need you and all you do for us 🙏🏼🦅❤️. Thank you and please know I greatly appreciate you and everything you encompass!! 😊🙏🏼🦅🐶😘

    Liked by 1 person

    Comment by Kathy S.B — September 12, 2019 @ 10:33 AM

  25. So how do they stop the “hypoxia” that way the hippocampus won’t atrophy?

    Liked by 1 person

    Comment by Kathy S.B — October 12, 2019 @ 3:14 PM

    • Believe it or not, exercise may be one of these effective treatments that can reverse brain atrophy.

      In several different stress-related conditions all of which are known to cause hippocampal shrinkage, there is evidence that effective treatment can at least partially reverse this atrophy, leading to growth rather than further loss.

      Just how much recovery is possible remains to be seen, but in one study shown here, function returned to normal.

      https://psycheducation.org/depression-is-not-a-moral-weakness/chapter-11-can-the-shrinkage-be-reversed/

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 12, 2019 @ 5:50 PM

      • I like that. I was always of the belief that if I was active and sweat off the fat and continued to do things that it’s always alright and beneficial to the human. But there’s times when all that work and sweating can drain your body of electrolytes and decrease a bodies sodium levels. Lol makes me wonder if salt candy would help? Because at that point the person is al put on a fluid restriction. Or possibly what are referred to as “BONKS” by people who are in marathons

        Liked by 1 person

        Comment by Kathy S.B — October 12, 2019 @ 6:09 PM

      • I never realized how important it is to keep sodium and chloride levels in par with one another.

        Liked by 1 person

        Comment by Kathy S.B — October 12, 2019 @ 6:12 PM

      • Just stay away from energy drinks!

        Epilepsy and Energy Drinks – Think Before You Drink!

        https://epilepsytalk.com/2011/10/23/epilepsy-and-energy-drinks-think-before-you-drink/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 13, 2019 @ 10:17 AM

  26. I must admit I’m VERY VERY SLOWLY cutting back on my medication too!!!!! I’m trying to go back to my original dosage as well!! I hope it’s not too late, but knowing and having it confirmed by an “internal specialist” that my issues were caused from my tegretol left me feeling like “okay slowly go back of tegretol (apparently it’s the cause of what’s happening in my body) to my original dosage and then start cutting down the next one “clobazam” and then get to the Dilantin and then talk to the pharmacist about one multi vitamin

    Liked by 1 person

    Comment by Kathy S.B — October 13, 2019 @ 10:19 AM

  27. It just left me to wonder why isn’t everyone working together now? I used to ask my great grandparents that too. Now maybe our children and generations after will realize we are only strongest together 💗🙏🏼🦅🙏🏼😇🙏🏼

    Liked by 1 person

    Comment by Kathy S.B — October 13, 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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