Anti-Epilepsy Drugs Lose Effectiveness Over Time…

Anti-Epilepsy Drugs Lose Effectiveness Over Time… | February 9, 2020

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 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.

To subscribe to Epilepsy Talk, simply go to the bottom of the right column, enter your email address and click on “Follow”.

Resource:

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

Posted in Epilepsy, Medication Issues, Research
Tags: anti-epilepsy drugs, decline, drug-resistant, effectivness, metabolism, time, tolerance

70 Comments »

Makes sense..both in the intolerance as well as the higher dosage (and all of it’s problems for us). I’m on 200 mg lamotigine twice a day. This may not seem like much of a dose to many of you but this higher dose is messing things up for me — lack of memory is worse than ever and also troublesome as well as dangerous is lack of balance. Was planning on discussing with my neuro this week but 2 days prior to the appointment, I found out that my new insurance didn’t cover him…he was so great too…I’m going to miss him. Hoping to get my family doc to prescribe meds.

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Comment by Ellen LaFrancis — February 9, 2020 @ 3:11 PM

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- I’m on 200 mg lamotigine twice a day with terrible balance problems. In fact, I have a trainer who’s been teaching me core exercises to strengthen my core, my balance and even my posture.
  
  He’s a life saver. I’ve gone from 25 falls in one year, to 3 to 5 falls, the year after. It’s really quite amazing.
  
  Does your insurance have a list of neuros in the network? Because it would really be preferable than depending on a GP to deal with neurological problems.
  
  I helped my niece find a psychiatrist by keying in her zip code and insurance provider and then researching the results. It looks like we found a potential fit.
  
  25 years in practice and 5 stars. Now we have to see if he’s accepting new patients.
  
  I don’t know if this list will help, but take a look.
  
  2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
  
  https://epilepsytalk.com/2020/01/08/2020-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
  
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  Comment by Phylis Feiner Johnson — February 9, 2020 @ 3:35 PM
  
  Reply
- Lol I ended up walking into emergency before I had to pay for an ambulance to bring me in and have my husband and children go though all the questioning as to:
  1) if I had been drinking?
  Or
  2) what drugs (negative connotation) I’m on?
  That way my husband NEVER HAD TO BE TREATED IN A NEGATIVE WAY EVER AGAIN!! THAT WAS HURT THE MOST!! Even more than the 27 stitches I had because I cut my head open in a fall during the middle of the night!! I have ended up back on the medications I’ve been on for 41 years. Now it’s come to prayers and hope until I ever get back into another neurologist again!! But that’s okay 😊 I have A LOT OF ANGELS!! 🙏🏼🦅😇🙏🏼💞
  
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  Comment by Kathy S.B — February 9, 2020 @ 5:01 PM
  
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  - Kathy, at least we as Canadians don’t have to worry if our neurologist is covered by our plans! They automatically are. I can’t imagine having to go through the things others do who don’t have universal health care. Also, our $385 ambulance fees can be thousands in the US.
    However, you and your family deserve to be treated with respect.
    
    LikeLiked by 2 people
    
    Comment by Marlyn — February 9, 2020 @ 6:55 PM
  - Goodafternoon Marlyn 😊. Yes your very right about the ambulance fee!!!!! I find (for myself) i would almost prefer to just tough it out and wait for my husband, children or best friends before an ambulance is called. Simply because I KNOW WITH MY LOVED ONES I AM SAFE!!!!! Plus I ALWAYS MADE SURE WE HAD EXTRA INSURANCE!!!!! It seemed to me most of our money went to insurances. I used to coach hockey and when I felt a seizure coming on I taught my team to take a knee and I would do my DARNDEST TO GET TO THE GATE (if not I dropped until my husband could get to me) OR MY HUSBAND WOULD COME ON TO THE ICE AND TALK ME TO THE DRESSING ROOM. I always came back though (for the next practice) that way my team knew to never give up trying what they loved the most and that I was going to alright. Looking back now that was probably the wrong thing to do, but I always wanted my children and team to never allow anything to stop them from what they loved so much!!!!! I figured if I could do it so could they, BUT BETTER!! AND THEY DID!! 😘😊.
    
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    Comment by Kathy S.B — February 9, 2020 @ 7:41 PM
I’m sorry to hear that Ellen. I guess while we’re at it that’s a secret fear of mine as well. Especially knowing something has to change somehow. I.e. my medication!! So far it hasn’t been easy at all on me or my body and mind. However for the loved of myself, husband, children, family and friends I have to keep trying! As long as I have a chance to catch my breath in between changes in medications. As for a neurologist or epitologist I COMPLETELY AGREE!! If it isn’t the cost it’s finding the best neurologists that can answer all my questions without any form of intimidation and yes sincerely care to make the time. Because EVERYTIME there’s a medication change or titration there’s also a peaks and valleys that go along with it. As for surgery after speaking and witnessing some epileptics who have undergone various testing and internal mri’s regarding seizure focus, the process before, during and after I don’t think that’s an option for either. It’s awful to already have epilepsy as seizures, but medications and surgeries or lack of honesty about what can happen to us “epileptics and loved ones” seems to be hidden or not spoke of to us or our family and friends. That’s unfortunate. As for dosage I sure wish that was easy as well. Plus once again I will probably be waiting another year to see a female neurologist now as well. I apologize for everything we all have to endure through out our lives and that is why we should all appreciate, hear and sincerely care and teach EACHOTHER while we could. Please be well and make lots of good memories today 😘🙏🏼❤️😇💞

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Comment by Kathy S.B — February 9, 2020 @ 4:53 PM

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- It’s great having family support. I have a wonderful husband who has stood by my side through all of this. I’ve only gone to the ER once…that was because of the first seizure..took us unawares. My epilepsy began almost a year after brain ( they found one!) surgery. Now I instruct those around me on how to handle these and about the amount of time before calling 911. I am so fortunate in that mine is nocturnal only. Get to have them privately on a padded surface. As for the balance issues…so far I’ve hit the floor once and had a couple of near misses. There will be no step ladders even to do something as simple as changing a light bulb. Only female here..and short besides so the guys will just have to do those high up chores. Not that any of them are likely to get around to it in any timely manner lol. I adored my neurologist…so sad to have to go elsewhere. He was one of those rare ones that would give me all of the time I needed and to discuss what we needed to do with meds and any concerns I might have. This guy came along after I’d fired 3 neurologists before him.
  
  We have Blue Cross blue shield for health insurance. You’d think there wouldn’t be any issue. The problem is that it’s an EPO. 😖😖. Be well and safe. So great that we all have one another for this..crap. All of you be safe!
  
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  Comment by Ellen — February 9, 2020 @ 6:50 PM
  
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  - Thank you for sharing Ellen 💕. Ya I GOT REALLY LUCKY with my first 2 FAMILY DOCTORS!! One of which was the one who was FINALLY ABLE TO DIAGNOSE ME WITH EPILEPSY (his daughter was older than me, which is how he knew what was wrong with me) and the SECOND ONE (his daughter was younger than myself with epilepsy) and I SWEAR even though he’s retired I STILL SPEAK WITH HIM FIRST AND ASK FOR HIS GUIDANCE!! I know ALL MEDICAL PROFESSIONALS AND DOCTORS AREN’T awful, but it’s the ones who are set in their ways that make decisions based on IGNORANCE of what they think may work or help vs what we as patients think and feel that can turn us away from even wanting to try (what sometimes feels like a gamble) with different medications. Lol yes I WILL ADMIT “I am a bit of a rebel (in disguise) sometimes, but I think that can be part of my strength more than me weekness. As long as I know when to humble myself and remember we are all still human with feeling and compassion too. As for light bulbs and ladders well I refuse to allow them to beat me (even though I know they do sometimes). As long as I have someone on the other side of the ladder holding my body or legs 🙏🏼🦅😇😘. I guess it’s that some medical professionals don’t realize how much we and our families have so much confidence in them and yes we as “epileptics” have to almost feel the water first then we decide based on what tests are done and how our relationship is with the doctor. We also have my husband’s insurance, but what about those who aren’t so lucky? Lol I also have 2 Chihuahua’s and a cat. My husband and children all know if my animals all sleep with me to watch me too!! I thought of surgery as well until friends of mine (who were epileptic out right told me “NOT TO DO IT!!”) so I backed out before it was even brought up. However I also am one who has (tried to change my medications) and has never been able to for 41 years (I’m 49.5 PROUDLY now 😘). It REALLY UPSET ME when I heard my husband tell me the doctor refused to speak with him after my grandma seizure (when I cut my head open) and my oldest daughter was asked “how much alcohol I drank or what drugs I took?”. Our loved ones are already going through enough and there’s no need to continue treating them in such an awful way when their just trying to help us. I feel my seizures coming on and I instantly walk away and laydown until they pass as well. Thank you SO MUCH FOR SHARING WITH ME!! Sometimes there’s never the proper words to explain how grateful I really am to all of you. Please take care of yourself and please be well!! 😊🙏🏼🦅😇💕
    
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    Comment by Kathy S.B — February 9, 2020 @ 7:24 PM
Kathy, why will you be waiting another year to see a female neurologist?

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Comment by Phylis Feiner Johnson — February 9, 2020 @ 8:57 PM

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Pribably

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Comment by Kathy S.B — February 9, 2020 @ 9:39 PM

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- But WHY???
  
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  Comment by Phylis Feiner Johnson — February 9, 2020 @ 9:45 PM
  
  Reply
  - My doctor feels a female neurologist maybe able to help me more than a male neurologist for the life phase change I’m facing right now. And after 10yrs the male neurologist I had never did an eeg or mri or cat scan and left before I had a chance to ask any questions. Then I was put in GENERIC MEDICATIONS after I told him I’m allergic to “generic medications”.
    
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    Comment by Kathy S.B — February 9, 2020 @ 10:08 PM
Because that’s almost how long it took to see the last one. Gosh wouldn’t it be nice if not only we could teach them while they help us? I would GLADLY DO THAT (AS AN EPILEPTIC)!!

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Comment by Kathy S.B — February 9, 2020 @ 9:55 PM

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Sigh. I can’t believe it’s going to take a year. And there’s no guarantee even after that…

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Comment by Phylis Feiner Johnson — February 9, 2020 @ 10:40 PM

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Well I pray it doesn’t take a year 🙏🏼😇🦅🙏🏼. However after what I went through last year and the time it took I won’t be surprised if it does. On the flip side I also pray if or whenever I finally get a female neurologist she has the time to answer our questions and HELPS ME BE ABLE TO HELP MYSELF 🙏🏼🦅😇🙏🏼. I won’t lie that’s a HUGE REASON WHY I AM APPREHENSIVE ON SIMPLY TRYING MARIJUANA to help myself. I always have to make my decisions (medically) based on how my husband and children maybe treated on account of whatever the medical professionals want me to ingest or allow to be put in my body. However in the long run everything boils down to “the drugs we ingest and wether or not they lose their effectiveness”. And if they do what do we do then that won’t create more harm than help? Thank you Phylis and your group 🙏🏼🦅😇💞

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Comment by Kathy S.B — February 9, 2020 @ 11:00 PM

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In the research, have they analyzed which AEDs are most likely to show a reduction in effectiveness over time; are their particular characteristics of the individuals taking AEDs; was it a specific type of seizure. Did they also account for triggers that have an influence on the onset of seizures for individuals on AEDs?

Thanks Kathy for acknowledging that a seizure doesn’t mean you call 911. All that does is waste time and money. Unless there is an injury or the person requests it or the seizure doesn’t stop, I’d prefer to be taken home or left to recover.

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Comment by Tom Waltz — February 10, 2020 @ 1:29 AM

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I didn’t read anything about triggers having an influence on the onset of seizures for people taking AEDs, but it certainly is a good question.

Perhaps you’ll find these articles to be of interest though:

Common Epilepsy Triggers

https://epilepsytalk.com/2017/11/11/__trashed-2/

Weird Epilepsy Triggers

https://epilepsytalk.wordpress.com/?p=11787&preview=true

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Comment by Phylis Feiner Johnson — February 10, 2020 @ 10:43 AM

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I’m not sure that “progressive” is an accurate term for seizure disorders. Or maybe it is for some forms and not for other forms. Certainly what happens to me has changed. Once it was this and now it is that, making it difficult to describe as well as to treat.

“Progressive” to me means larger, involving more brain cells, or becoming more frequent or intense, and staying that way. This has not been my experience.

As we age, the levels of stress change, the watchfulness can ramp up, and the hormonal involvement is all over the map. Foods are becoming more exotic. Medicines are becoming more numerous. (I had a pneumonia booster shot the other day, followed by three lively days of low-grade seizures, totally unexpected.) So we progress / age at the same time that our environment changes, sometimes radically. All of this will have a bearing on how the synapses are behaving on any given day.

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Comment by HoDo — February 10, 2020 @ 11:20 AM

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- Great point. And definitely one to consider.
  
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  Comment by Phylis Feiner Johnson — February 10, 2020 @ 11:23 AM
  
  Reply
- Goodmorning HoDo 😊. Wow are you ever right!!!!! I can’t even get a flu shot now because EVERYTIME I do I either get really sick or I have grandmal seizures!! Which in all honesty have made me NOT WANT THE FLU SHOT AT ALL!! I have right temporal lobe epilepsy which meant my headaches (which were also my cue to take it easy) use to start in the front right temporal lobe. Now it seems to me the headaches have shifted to the left side and not with the grandma seizure but with the focal seizures. Well you know how it went with trying to change my medications and I have to admit other than trying to eat properly and exercise and take yogurt and vitamins it almost feels like one of the toughest seizures I’ve ever had and I can’t shake it!!!!! I’m afraid to get the pneumonia shot now!! Thank you for sharing and the knowledge. Please have a very good day today HoDo and take care of yourself 😊
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — February 11, 2020 @ 12:10 PM
  
  Reply
  - It didn’t occur to me when getting the pneumonia booster shot, but I could have asked for a pediatric dose. I, too, have right temporal lobe damage. The seizures this time took the form of somatic hallucinations – a serious nuisance, no more.
    
    LikeLiked by 2 people
    
    Comment by HoDo — February 11, 2020 @ 2:42 PM
  - I’m sorry to hear that HoDo. I hope you get well soon and we’re able to have a full recovery 😘.
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 11, 2020 @ 7:29 PM
Thank you Phylis for providing this information. Over 20+ years I was on 9 medications. After about two years, the honeymoon was over and the reality of my seizures returned. Fortunately, a new medication would come along, and I’d have control for a few more years, unless I had a reaction to the ASD, causing me to become threatening or the ASD attacking my body. (When the ASD changes a personality or is worse than a seizure the neurologist should be informed immediately.) Eventually ASD’s became ineffective, and surgery my best option, even though it required opening my skull and removing parts of my brain to get to the seizure trigger point. Surgery is not for everyone, but places like Johns Hopkins have new techniques that make it an overnight, vs a weeklong process; they no longer have to open the skull to do it. I’m still on medication but having blood levels checked a few times a year and knowing my triggers, like lack of sleep, not eating proper foods, alcohol, colds, etc. has given me control of my seizures and not allowing them (or ASDs) to have control over me.

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Comment by Jon Sadler — February 10, 2020 @ 12:43 PM

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- Goodmorning Jon 😊. I guess it just makes me nervous in terms of surgery and the short/long term effects of on us? I asked the neurologist when I seen him as to my options and again keppra was put on the table along with toperimate. I was curious about the “gamma Knife Surgery”, but due to the concussions I have suffered surgery may not even be on the table or an option. But we never really hear about to impacts (good or bad) about any brain surgery and that’s a bit disheartening. Especially when we try to help eachother make the best sound decision as to pros and cons of surgery. Thank you I greatly appreciate what you have informed us with. Please take care and have a very good day today 😊.
  
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  Comment by Kathy S.B — February 11, 2020 @ 12:19 PM
  
  Reply
  - Kathy, there are alternatives to brain surgery. Maybe this will help:
    
    Brain Surgery Alternatives
    
    https://epilepsytalk.com/2019/04/26/brain-surgery-alternatives/
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — February 11, 2020 @ 1:14 PM
I appreciate all the information received here!

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Comment by Susan Cassada — February 10, 2020 @ 2:44 PM

Reply
- Oh Susan, I’m so glad you’ve found Epilepsy Talk to be useful!
  
  If you’d like to subscribe and get the latest articles, simply go to the bottom box on the right, enter your email address, and click on “Follow”
  
  We’d love to see and hear more from you.
  
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  Comment by Phylis Feiner Johnson — February 10, 2020 @ 3:32 PM
  
  Reply
Jon that’s fabulous! And congratulations for having the courage for brain surgery. I know it must not be an easy decision.

What procedure did you have?

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Comment by Phylis Feiner Johnson — February 10, 2020 @ 3:28 PM

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Goodmorning Phylis 😊. Speaking of medication I AM FINALLY FINISHED MY ANTIBIOTIC HOMECARE THERAPY FOR MY LEG!!!!!!! Thank to a reaction from the medication the neurologist started me on in Calgary, AB Canada at the beginning on December 2019!! Now just to PRAY IT IS ALL OVER WITH!!!!! I have to go back now and see my family doctor to ensure all is well. I have to after going through that since then until now I AM VERY HESITANT ON EVEN TRYING ANYTHING ELSE NOW!!!!!!! 😰😰 but on the flip side AT LEAST I AM HOPEFULLY FINISHED HOMECARE AND ANTIBIOTIC TREATMENTS!! Please be well and take care 😊🙏🏼🦅😇💕😘

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Comment by Kathy S.B — February 12, 2020 @ 9:54 AM

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- CONGRATULATIONS! Fingers crossed that all that infection is behind you.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:09 AM
  
  Reply
  - Thank you Phylis 😊. Wow I didn’t realize I was capable of having an infection THAT LONG!!!!!!!
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 12, 2020 @ 11:10 AM
  - Who would have thought that was possible?
    
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    Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:25 AM
Man I’ve been on megadoses of several AED’s. Back around 1999 they had my TegXR up to 2200/day. As a child I was on 1400-1600.

Keppra they had me on 5000 at one point.

I know patients who couldn’t be anywhere NEAR those doses of Teg or Keppra. One friend had to split the Keppra 250’s and attempt an increase every 2 weeks because of their reaction.

I seem to be one who builds up a tolerance. Gabapentin (for pain) only worked for a couple years and I was unwilling to increase because of side effects I already had.

Trileptal was another that I had a high dose of. I want to say 2400/day. I had to switch it to QID if I remember correctly rather than BID as initially ordered.

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Comment by Travis — February 12, 2020 @ 10:47 AM

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- Goodmorning Travis 😊. May I please ask what the difference is with “QID’s” and “BID’s”? Thank you and please have a very good day today 😊.
  
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  Comment by Kathy S.B — February 12, 2020 @ 11:35 AM
  
  Reply
Boy Travis, you’ve really been through the ringer. What are you taking now?

Have you considered any of these alternatives? (Forget the brain surgery part.)

Brain Surgery Alternatives

https://epilepsytalk.wordpress.com/?p=11806&preview=true

Or these (in addition to your medication):

Epilepsy And Complementary Medicine…

https://epilepsytalk.com/2018/10/18/epilepsy-and-complementary-medicine/

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:22 AM

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I apologize I don’t mean to rant, but there are so many times I was told not to take something or to take something because it was FDA CERTIFIED!! OR NOT!! And then told I couldn’t take what was taught to me (by my great grandparents and grandma) to try and help myself (when I was older) because they don’t mix with the medications (sometimes poisons) the doctors kept prescribing me. When yet I have taken them all my life from a baby to now. As for the chiropractor it was only after seeing the chiropractor when I started going numb and tingling. Which lead me to maybe it’s a possible nerve pinch in my neck or back due to concussions or falls I incurred. The pharmacist and doctor almost make me feel bad for wanting to try marijuana for myself and even at that we still have to purchase it on top of our already daily concoction of poisons we already have to take. That is not fair to anyone from anywhere in the world they maybe in (financially or medicinally). Especially if they are already on a fixed income and the cost of live keep rising as our leaders keep endangering everyone’s wellbeing and lives in EVERYWAY, shape and form. I have literally told the doctor “just give me lorazepam for when I need it and I’ll figure out the rest as I go along and let you know. Because I can’t afford to keep being played as a piggy bank or lab rat”. Thank you Phylis for allowing me to say that and please have a very good day today. I’m sorry

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Comment by Kathy S.B — February 12, 2020 @ 12:07 PM

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As for my leg lol “UNPASTEURIZED HONEY” also helped 😘. What they don’t know won’t hurt them 😘😘

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Comment by Kathy S.B — February 12, 2020 @ 12:09 PM

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We don’t pay for unpasteurized honey as much as we do for the drugs we are told to ingest from any medical professional. Just a thought.

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Comment by Kathy S.B — February 12, 2020 @ 12:21 PM

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- And there’s no patent or BIG Pharma mark-up!
  
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  Comment by Phylis Feiner Johnson — February 12, 2020 @ 12:22 PM
  
  Reply
  - Or more poisons in our bodies 😘
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 12, 2020 @ 12:24 PM
  - Also I was told “mint tea” wasn’t good for me. Yet now they sell it in the pharmacies and grocery store. I will admit I did have to shake my head and my husband just laughed 😂
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 12, 2020 @ 12:26 PM
For those of you who find that medications such as flu shots can trigger seizures: I asked my doctor whether it was possible to have several, spaced pediatric doses instead on a one-size-fits-all adult dose. She said that while her office doesn’t carry pediatric doses, she will look into how I might get access to some.

My previous doctor didn’t know that a medication he’d prescribed for me came in lower doses – I had to ask the pharmacist. So when you need protective meds, it pays to ask whether lower / pediatric doses are available. It might make the difference between seizure and not.

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Comment by HoDo — February 13, 2020 @ 11:23 AM

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- Maybe I’ll try that now. I was afraid to get my flu shot due to everytime I had it in the past I got so sick it wasn’t funny.
  
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  Comment by Kathy S.B — February 13, 2020 @ 8:12 PM
  
  Reply
Brilliant as always, HoDo.

I don’t think any one of us would have considered that.

And as I always say: Your pharmacist can be your best friend!

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Comment by Phylis Feiner Johnson — February 13, 2020 @ 3:26 PM

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- More desperate than brilliant – years of inadequate medical care, “I do not want to live this way!” and why waste energy on long rants? (Short rants are wonderful!) So I turned the research into technology I’d learned at work into research for my own health. Not even my best doctor knows everything or is right all the time.
  
  Also learned a lot when my sister had cancer – if you’re small, ask for pediatric needles and other invasive equipment to save wear and tear on the body.
  
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  Comment by HoDo — February 13, 2020 @ 4:02 PM
  
  Reply
  - I asked for pediatric needles at the hospital today and they still couldn’t hit gold. Just a tiny, rolling vein that gave them the minimum of blood and me a maximum of a swollen hand. 😦
    
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    Comment by Phylis Feiner Johnson — February 13, 2020 @ 6:30 PM
  - Ya they couldn’t get I.V. In me either. However I met my doctor today and all is well so far.
    
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    Comment by Kathy S.B — February 13, 2020 @ 8:14 PM
  - YAY!
    
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    Comment by Phylis Feiner Johnson — February 14, 2020 @ 10:41 AM
  - I ended up telling the nurses to get to the inside of the middle of my arm to put an I.V. In and take blood out. They keep switching arms now. Mine do that too.
    
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    Comment by Kathy S.B — February 14, 2020 @ 10:28 AM
  - They had to take it from the back of my wrist! Without much success, after everything else failed.
    
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    Comment by Phylis Feiner Johnson — February 14, 2020 @ 10:40 AM
  - I’m sorry to hear that. I never even got my flu shot yet this year because I had that infection for so long. Now I don’t even want to think of a needle. I guess the thing is: if they must constantly change our medications why must we have to suffer EVERYTIME? Until one works.
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 14, 2020 @ 10:43 AM
  - I just came home from the hospital where they had to do a second CBC, because my blood is not clotting properly.
    
    I’m terrified.
    
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    Comment by Phylis Feiner Johnson — February 14, 2020 @ 4:21 PM
  - Everything will be alright Phylis 😘. I COMPLETELY UNDERSTAND YOUR FEAR AND MY BLOOD WASN’T CLOTTING EITHER!!!!! Maybe it’s your iron levels and sometimes a second CBC isn’t all a bad thing. It could also be a way for the doctors and medical professionals to confirm their diagnosis or possible thoughts as to what maybe going on. I’ve done it a lot lately and most of the time all I could is PRAY AND HAVE FAITH KNOWING I WILL BE OKAY!! And of course COME BACK TO YOUR ONLINE GROUP THEIR THE BEST I SWEAR AND SO ARE YOU!! 😘🙏🏼🦅😇💞😘😘😘😘😘
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 14, 2020 @ 5:36 PM
  - I have a VERY CLOSE FAMILY MEMBER who has to constantly go for bloodwork for the same reason. Of course she’s not an epileptic, but when there are problems with her levels she sometimes requires medications to help her. I know I was secretly afraid of that myself when it kept happening to me as well. You will be in my HEART, THOUGHTS AND PRAYERS PHYLIS 🙏🏼😇🦅💞😘. You ALWAYS HAVE US (YOUR GROUP FAMILY) WHENEVER YOU NEED US LIKE WE NEEDED YOU!!!!!!! 😘🙏🏼🦅😇💞💞💞💞💞😘
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 14, 2020 @ 5:59 PM
  - Thank you from the bottom of my heart.
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:04 PM
It makes perfect sense to me that seizure meds lose effectiveness over time because, as HoDo said, our bodies change and mature as we age. A 20 yr old vs a 60 yr old on 3000 mg of Keppra for example is dealing with vastly different issues. I like your idea of it being “progressive”.

LikeLiked by 2 people

Comment by skolly9 — February 13, 2020 @ 5:44 PM

Reply
I’ve had stomachaches my whole life (to the point of where I had to almost jump out of a vehicle) one time. I’ve just never had tingling and numbness which started after I was started on generic medications (by accident) by the pharmacist. Lol even my doctor said “maybe you don’t have epilepsy anymore?”. All I could say is okay lol now “can I please get my re-fills? Or should we stop them and wait and see you on a gerney later?”

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Comment by Kathy S.B — February 14, 2020 @ 10:55 AM

Reply
- Well said to an really unfortunate situation.
  
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  Comment by Phylis Feiner Johnson — February 14, 2020 @ 12:07 PM
  
  Reply
Sending you good thoughts, Phylis.

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Comment by HoDo — February 14, 2020 @ 5:37 PM

Reply
- I think my fear may be over-the-top, but I’m a basket case.
  
  I ground the coffee without the cup underneath. Result? Coffee spewing out everywhere.
  
  Happily Arthur was there to take over. As he always is.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:01 PM
  
  Reply
  - Terrified is just another emotion, my dear. Totally understandable. Think of it as a particularly explosive sneeze in response to pollen.
    
    It’s a day to rest up with a trashy novel and a cat on your lap. Your husband can bring you tea.
    
    LikeLiked by 2 people
    
    Comment by HoDo — February 15, 2020 @ 6:57 AM
Lol 😂 that’s why I now just wait for my husband to make coffee too!! 😘😘. IT IS ALWAYS MY FAVOURITE TOO!! 😘

LikeLiked by 1 person

Comment by Kathy S.B — February 14, 2020 @ 6:10 PM

Reply
- He’s a better barista than me anyway. Puts Starbucks to shame! 🙂
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:18 PM
  
  Reply
  - I AGREE!!!!!!! Plus ITS MADE WITH HIS LOVE TOO!!!!!!! 🙏🏼🦅❤️😊
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — February 14, 2020 @ 6:31 PM
Here in Canada we have “Tim Hortons” and “MCDONALDS”. My husband came into my bedroom thismorning and said to me “GOODMORNING SOMETHING SOMETHING 😃 HAPPY VALENTINES DAY I BROUGHT YOU INE OF YOUR FAVOURITE MANS (TIM HORTONS)COFFEE THISMORNING 😘 and AFTERNOON WORK I WILL BRING YOU YOUR OTHER TO MENS COFFEE!! (MCDONALDS & MY HUSBAND) 😂😂😂😂😂😘😘😘😘😘.

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Comment by Kathy S.B — February 14, 2020 @ 6:20 PM

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Secretly (lol almost) EVERYTIME I came home from doctor’s visits, and bloodwork I would grab my two dogs (Chihuahua’s) and my cat and I would come and laydown on my bad with all of them or them with me and I would just talk to them about everything and ALL MY FEARS and on and on. Thank god/creator/my grandma they JUST LISTENED AND LOVED ME BACK!! I found it helped give me the courage to sometimes even get on with you group and read your blog and then ALL OF YOU GAVE ME COURAGE, KNOWLEDGE AND COMPASSION!! Plus IDEAS, HOPE AND UNCONDITIONAL LOVE AND UNDERSTANDING!! Thank you PHYLIS AND HER GROUP READERS!!!!!!! You mean WAY MORE THAN YOU EVER KNOW AND HELP RE-INSTILL HOPE AND FAITH IN ME!!!!!!! For that I will ALWAYS BE GREATFULLY THANKFUL TO YOU ALL!!!!!!! 😘🙏🏼🦅😇💞

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Comment by Kathy S.B — February 14, 2020 @ 7:11 PM

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Reblogged this on Disablities & Mental Health Issues.

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Comment by Kenneth — May 24, 2021 @ 12:11 PM

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Drs. Loshcher & Schmidt should not worry how drug side effects & not doing their jobs, are making our lives more of a living hell,, but the NEED TO FIND THE REASON/S as to WHY the brain chemistry from these drugs change for the worse in over 98% of the drugs we are to take. I saw where 1 here above had GRAND MALS from getting a flu shot & he”s afraid to get any other shots. SAME HERE as I will never make my brain to have STATUS EPILEPTICUS because of a doctor telling me I NEED TO GET THOSE SHOTS. No way, not when I remember when I did get a shot from my family doctor & 2 weeks later at 10 years old I had my 2nd GRAND MAL after my 1st 1 I had 15 months earlier. My 3rd GRAND MAL was & still is a mystery as to what triggered that while I was in bed the morning of when the GULF WAR started. STRESS from hearing of that maybe triggered that 1, but with number 4 & all after that, I learned where FOOD CHEMICALS & TOXINS & PRESERVATIVES DO & WILL trigger seizures. So really if the GLUTAMATE that is naturally in the brain never turns to GABA, then it is natural for any to all MSG’s & ASPARTAME, & the NITRATES & NITRITES that does nothing but EXCITE BRAIN CHEMISTRY, then there are seizures, to migraines to MS attacks & FIBROMYALGIA PAIN to have happen from all those good processed foods we have a collection of to eat or drink, IF you ignore the facts that THIS DOES HAPPEN & do not care about the cause more than the answer to stop seizures of all types. Seems like for me the AED EXCOPRI has been working for me for the past 7 & 1/2 months now with no seizures since 11-09-21. But why ALUMINUM is in any AED is a mystery to me, when it does NOTHING but confuse you & make your memory worse than it already is from all the AED’s that have ALUMINUM. XCOPRI 50MG tablet seems to be the 1 pill with NO ALUMINUM in it, as when I did try the others from 12.5, 25, 100 & 150MG tablets that all has ALUMINUM IN THEM, I still had some seizure activity, when I took those tablets, but still no 100% full blown seizure/s. BUT with the 50MG tablet of XCOPRI,, NO seizure activity to make me even think of a seizure getting ready to make my brain chemistry destroy itself & I have a GRAND MAL from it all. Along with VIMPAT 100MG tablet which it has NO ALUMINUM IN IT not like the 50, 150 & 200 MGS tablets that DOES CONTAIN ALUMINUM,, I felt about the same ways when I tried them back 13 years ago & I said then to my neurologist, I WILL ONLY TAKE THE 100MG TABLET IF I AM TO STAY ON VIMPAT, & so it is 13 years later with XCOPRI, as I believe now I have the BATMAN & ROBIN AED’s that I needed since 2012 & 2013. Hopefully all of this is or was something to think about.

LikeLiked by 1 person

Comment by James D — June 25, 2022 @ 1:47 PM

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- Xcopri provides long-term seizure control in patients with focal epilepsy https://epilepsyu.com/xcopri-provides-long-term-seizure-control-in-patients-with-focal-epilepsy/
  
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  Comment by Phylis Feiner Johnson — June 26, 2022 @ 10:56 AM
  
  Reply
“WHY the brain chemistry from these drugs change for the worse in over 98% of the drugs we are to take”, is the question. But who’s to bother with an answer?

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Comment by Phylis Feiner Johnson — June 25, 2022 @ 3:45 PM

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Makes sense..both in the intolerance as well as the higher dosage (and all of it’s problems for us). I’m on 200 mg lamotigine twice a day. This may not seem like much of a dose to many of you but this higher dose is messing things up for me — lack of memory is worse than ever and also troublesome as well as dangerous is lack of balance. Was planning on discussing with my neuro this week but 2 days prior to the appointment, I found out that my new insurance didn’t cover him…he was so great too…I’m going to miss him. Hoping to get my family doc to prescribe meds.

LikeLiked by 2 people

Comment by Ellen LaFrancis — February 9, 2020 @ 3:11 PM

I’m on 200 mg lamotigine twice a day with terrible balance problems. In fact, I have a trainer who’s been teaching me core exercises to strengthen my core, my balance and even my posture.

He’s a life saver. I’ve gone from 25 falls in one year, to 3 to 5 falls, the year after. It’s really quite amazing.

Does your insurance have a list of neuros in the network? Because it would really be preferable than depending on a GP to deal with neurological problems.

I helped my niece find a psychiatrist by keying in her zip code and insurance provider and then researching the results. It looks like we found a potential fit.

25 years in practice and 5 stars. Now we have to see if he’s accepting new patients.

I don’t know if this list will help, but take a look.

2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

https://epilepsytalk.com/2020/01/08/2020-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — February 9, 2020 @ 3:35 PM

Lol I ended up walking into emergency before I had to pay for an ambulance to bring me in and have my husband and children go though all the questioning as to:
1) if I had been drinking?
Or
2) what drugs (negative connotation) I’m on?
That way my husband NEVER HAD TO BE TREATED IN A NEGATIVE WAY EVER AGAIN!! THAT WAS HURT THE MOST!! Even more than the 27 stitches I had because I cut my head open in a fall during the middle of the night!! I have ended up back on the medications I’ve been on for 41 years. Now it’s come to prayers and hope until I ever get back into another neurologist again!! But that’s okay 😊 I have A LOT OF ANGELS!! 🙏🏼🦅😇🙏🏼💞

LikeLiked by 1 person

Comment by Kathy S.B — February 9, 2020 @ 5:01 PM

- Kathy, at least we as Canadians don’t have to worry if our neurologist is covered by our plans! They automatically are. I can’t imagine having to go through the things others do who don’t have universal health care. Also, our $385 ambulance fees can be thousands in the US.
  However, you and your family deserve to be treated with respect.
  
  LikeLiked by 2 people
  
  Comment by Marlyn — February 9, 2020 @ 6:55 PM
- Goodafternoon Marlyn 😊. Yes your very right about the ambulance fee!!!!! I find (for myself) i would almost prefer to just tough it out and wait for my husband, children or best friends before an ambulance is called. Simply because I KNOW WITH MY LOVED ONES I AM SAFE!!!!! Plus I ALWAYS MADE SURE WE HAD EXTRA INSURANCE!!!!! It seemed to me most of our money went to insurances. I used to coach hockey and when I felt a seizure coming on I taught my team to take a knee and I would do my DARNDEST TO GET TO THE GATE (if not I dropped until my husband could get to me) OR MY HUSBAND WOULD COME ON TO THE ICE AND TALK ME TO THE DRESSING ROOM. I always came back though (for the next practice) that way my team knew to never give up trying what they loved the most and that I was going to alright. Looking back now that was probably the wrong thing to do, but I always wanted my children and team to never allow anything to stop them from what they loved so much!!!!! I figured if I could do it so could they, BUT BETTER!! AND THEY DID!! 😘😊.
  
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  Comment by Kathy S.B — February 9, 2020 @ 7:41 PM

I’m sorry to hear that Ellen. I guess while we’re at it that’s a secret fear of mine as well. Especially knowing something has to change somehow. I.e. my medication!! So far it hasn’t been easy at all on me or my body and mind. However for the loved of myself, husband, children, family and friends I have to keep trying! As long as I have a chance to catch my breath in between changes in medications. As for a neurologist or epitologist I COMPLETELY AGREE!! If it isn’t the cost it’s finding the best neurologists that can answer all my questions without any form of intimidation and yes sincerely care to make the time. Because EVERYTIME there’s a medication change or titration there’s also a peaks and valleys that go along with it. As for surgery after speaking and witnessing some epileptics who have undergone various testing and internal mri’s regarding seizure focus, the process before, during and after I don’t think that’s an option for either. It’s awful to already have epilepsy as seizures, but medications and surgeries or lack of honesty about what can happen to us “epileptics and loved ones” seems to be hidden or not spoke of to us or our family and friends. That’s unfortunate. As for dosage I sure wish that was easy as well. Plus once again I will probably be waiting another year to see a female neurologist now as well. I apologize for everything we all have to endure through out our lives and that is why we should all appreciate, hear and sincerely care and teach EACHOTHER while we could. Please be well and make lots of good memories today 😘🙏🏼❤️😇💞

LikeLiked by 1 person

Comment by Kathy S.B — February 9, 2020 @ 4:53 PM

It’s great having family support. I have a wonderful husband who has stood by my side through all of this. I’ve only gone to the ER once…that was because of the first seizure..took us unawares. My epilepsy began almost a year after brain ( they found one!) surgery. Now I instruct those around me on how to handle these and about the amount of time before calling 911. I am so fortunate in that mine is nocturnal only. Get to have them privately on a padded surface. As for the balance issues…so far I’ve hit the floor once and had a couple of near misses. There will be no step ladders even to do something as simple as changing a light bulb. Only female here..and short besides so the guys will just have to do those high up chores. Not that any of them are likely to get around to it in any timely manner lol. I adored my neurologist…so sad to have to go elsewhere. He was one of those rare ones that would give me all of the time I needed and to discuss what we needed to do with meds and any concerns I might have. This guy came along after I’d fired 3 neurologists before him.

We have Blue Cross blue shield for health insurance. You’d think there wouldn’t be any issue. The problem is that it’s an EPO. 😖😖. Be well and safe. So great that we all have one another for this..crap. All of you be safe!

LikeLiked by 2 people

Comment by Ellen — February 9, 2020 @ 6:50 PM

- Thank you for sharing Ellen 💕. Ya I GOT REALLY LUCKY with my first 2 FAMILY DOCTORS!! One of which was the one who was FINALLY ABLE TO DIAGNOSE ME WITH EPILEPSY (his daughter was older than me, which is how he knew what was wrong with me) and the SECOND ONE (his daughter was younger than myself with epilepsy) and I SWEAR even though he’s retired I STILL SPEAK WITH HIM FIRST AND ASK FOR HIS GUIDANCE!! I know ALL MEDICAL PROFESSIONALS AND DOCTORS AREN’T awful, but it’s the ones who are set in their ways that make decisions based on IGNORANCE of what they think may work or help vs what we as patients think and feel that can turn us away from even wanting to try (what sometimes feels like a gamble) with different medications. Lol yes I WILL ADMIT “I am a bit of a rebel (in disguise) sometimes, but I think that can be part of my strength more than me weekness. As long as I know when to humble myself and remember we are all still human with feeling and compassion too. As for light bulbs and ladders well I refuse to allow them to beat me (even though I know they do sometimes). As long as I have someone on the other side of the ladder holding my body or legs 🙏🏼🦅😇😘. I guess it’s that some medical professionals don’t realize how much we and our families have so much confidence in them and yes we as “epileptics” have to almost feel the water first then we decide based on what tests are done and how our relationship is with the doctor. We also have my husband’s insurance, but what about those who aren’t so lucky? Lol I also have 2 Chihuahua’s and a cat. My husband and children all know if my animals all sleep with me to watch me too!! I thought of surgery as well until friends of mine (who were epileptic out right told me “NOT TO DO IT!!”) so I backed out before it was even brought up. However I also am one who has (tried to change my medications) and has never been able to for 41 years (I’m 49.5 PROUDLY now 😘). It REALLY UPSET ME when I heard my husband tell me the doctor refused to speak with him after my grandma seizure (when I cut my head open) and my oldest daughter was asked “how much alcohol I drank or what drugs I took?”. Our loved ones are already going through enough and there’s no need to continue treating them in such an awful way when their just trying to help us. I feel my seizures coming on and I instantly walk away and laydown until they pass as well. Thank you SO MUCH FOR SHARING WITH ME!! Sometimes there’s never the proper words to explain how grateful I really am to all of you. Please take care of yourself and please be well!! 😊🙏🏼🦅😇💕
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — February 9, 2020 @ 7:24 PM

Kathy, why will you be waiting another year to see a female neurologist?

Comment by Phylis Feiner Johnson — February 9, 2020 @ 8:57 PM

Pribably

Comment by Kathy S.B — February 9, 2020 @ 9:39 PM

But WHY???

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Comment by Phylis Feiner Johnson — February 9, 2020 @ 9:45 PM

- My doctor feels a female neurologist maybe able to help me more than a male neurologist for the life phase change I’m facing right now. And after 10yrs the male neurologist I had never did an eeg or mri or cat scan and left before I had a chance to ask any questions. Then I was put in GENERIC MEDICATIONS after I told him I’m allergic to “generic medications”.
  
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  Comment by Kathy S.B — February 9, 2020 @ 10:08 PM

Because that’s almost how long it took to see the last one. Gosh wouldn’t it be nice if not only we could teach them while they help us? I would GLADLY DO THAT (AS AN EPILEPTIC)!!

Comment by Kathy S.B — February 9, 2020 @ 9:55 PM

Sigh. I can’t believe it’s going to take a year. And there’s no guarantee even after that…

Comment by Phylis Feiner Johnson — February 9, 2020 @ 10:40 PM

Well I pray it doesn’t take a year 🙏🏼😇🦅🙏🏼. However after what I went through last year and the time it took I won’t be surprised if it does. On the flip side I also pray if or whenever I finally get a female neurologist she has the time to answer our questions and HELPS ME BE ABLE TO HELP MYSELF 🙏🏼🦅😇🙏🏼. I won’t lie that’s a HUGE REASON WHY I AM APPREHENSIVE ON SIMPLY TRYING MARIJUANA to help myself. I always have to make my decisions (medically) based on how my husband and children maybe treated on account of whatever the medical professionals want me to ingest or allow to be put in my body. However in the long run everything boils down to “the drugs we ingest and wether or not they lose their effectiveness”. And if they do what do we do then that won’t create more harm than help? Thank you Phylis and your group 🙏🏼🦅😇💞

Comment by Kathy S.B — February 9, 2020 @ 11:00 PM

In the research, have they analyzed which AEDs are most likely to show a reduction in effectiveness over time; are their particular characteristics of the individuals taking AEDs; was it a specific type of seizure. Did they also account for triggers that have an influence on the onset of seizures for individuals on AEDs?

Thanks Kathy for acknowledging that a seizure doesn’t mean you call 911. All that does is waste time and money. Unless there is an injury or the person requests it or the seizure doesn’t stop, I’d prefer to be taken home or left to recover.

Comment by Tom Waltz — February 10, 2020 @ 1:29 AM

I didn’t read anything about triggers having an influence on the onset of seizures for people taking AEDs, but it certainly is a good question.

Perhaps you’ll find these articles to be of interest though:

Common Epilepsy Triggers

https://epilepsytalk.com/2017/11/11/__trashed-2/

Weird Epilepsy Triggers

https://epilepsytalk.wordpress.com/?p=11787&preview=true

Comment by Phylis Feiner Johnson — February 10, 2020 @ 10:43 AM

I’m not sure that “progressive” is an accurate term for seizure disorders. Or maybe it is for some forms and not for other forms. Certainly what happens to me has changed. Once it was this and now it is that, making it difficult to describe as well as to treat.

“Progressive” to me means larger, involving more brain cells, or becoming more frequent or intense, and staying that way. This has not been my experience.

As we age, the levels of stress change, the watchfulness can ramp up, and the hormonal involvement is all over the map. Foods are becoming more exotic. Medicines are becoming more numerous. (I had a pneumonia booster shot the other day, followed by three lively days of low-grade seizures, totally unexpected.) So we progress / age at the same time that our environment changes, sometimes radically. All of this will have a bearing on how the synapses are behaving on any given day.

Comment by HoDo — February 10, 2020 @ 11:20 AM

Great point. And definitely one to consider.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — February 10, 2020 @ 11:23 AM

Goodmorning HoDo 😊. Wow are you ever right!!!!! I can’t even get a flu shot now because EVERYTIME I do I either get really sick or I have grandmal seizures!! Which in all honesty have made me NOT WANT THE FLU SHOT AT ALL!! I have right temporal lobe epilepsy which meant my headaches (which were also my cue to take it easy) use to start in the front right temporal lobe. Now it seems to me the headaches have shifted to the left side and not with the grandma seizure but with the focal seizures. Well you know how it went with trying to change my medications and I have to admit other than trying to eat properly and exercise and take yogurt and vitamins it almost feels like one of the toughest seizures I’ve ever had and I can’t shake it!!!!! I’m afraid to get the pneumonia shot now!! Thank you for sharing and the knowledge. Please have a very good day today HoDo and take care of yourself 😊

LikeLiked by 1 person

Comment by Kathy S.B — February 11, 2020 @ 12:10 PM

- It didn’t occur to me when getting the pneumonia booster shot, but I could have asked for a pediatric dose. I, too, have right temporal lobe damage. The seizures this time took the form of somatic hallucinations – a serious nuisance, no more.
  
  LikeLiked by 2 people
  
  Comment by HoDo — February 11, 2020 @ 2:42 PM
- I’m sorry to hear that HoDo. I hope you get well soon and we’re able to have a full recovery 😘.
  
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  Comment by Kathy S.B — February 11, 2020 @ 7:29 PM

Thank you Phylis for providing this information. Over 20+ years I was on 9 medications. After about two years, the honeymoon was over and the reality of my seizures returned. Fortunately, a new medication would come along, and I’d have control for a few more years, unless I had a reaction to the ASD, causing me to become threatening or the ASD attacking my body. (When the ASD changes a personality or is worse than a seizure the neurologist should be informed immediately.) Eventually ASD’s became ineffective, and surgery my best option, even though it required opening my skull and removing parts of my brain to get to the seizure trigger point. Surgery is not for everyone, but places like Johns Hopkins have new techniques that make it an overnight, vs a weeklong process; they no longer have to open the skull to do it. I’m still on medication but having blood levels checked a few times a year and knowing my triggers, like lack of sleep, not eating proper foods, alcohol, colds, etc. has given me control of my seizures and not allowing them (or ASDs) to have control over me.

Comment by Jon Sadler — February 10, 2020 @ 12:43 PM

Goodmorning Jon 😊. I guess it just makes me nervous in terms of surgery and the short/long term effects of on us? I asked the neurologist when I seen him as to my options and again keppra was put on the table along with toperimate. I was curious about the “gamma Knife Surgery”, but due to the concussions I have suffered surgery may not even be on the table or an option. But we never really hear about to impacts (good or bad) about any brain surgery and that’s a bit disheartening. Especially when we try to help eachother make the best sound decision as to pros and cons of surgery. Thank you I greatly appreciate what you have informed us with. Please take care and have a very good day today 😊.

LikeLiked by 1 person

Comment by Kathy S.B — February 11, 2020 @ 12:19 PM

- Kathy, there are alternatives to brain surgery. Maybe this will help:
  
  Brain Surgery Alternatives
  
  https://epilepsytalk.com/2019/04/26/brain-surgery-alternatives/
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — February 11, 2020 @ 1:14 PM

I appreciate all the information received here!

Comment by Susan Cassada — February 10, 2020 @ 2:44 PM

Oh Susan, I’m so glad you’ve found Epilepsy Talk to be useful!

If you’d like to subscribe and get the latest articles, simply go to the bottom box on the right, enter your email address, and click on “Follow”

We’d love to see and hear more from you.

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Comment by Phylis Feiner Johnson — February 10, 2020 @ 3:32 PM

Jon that’s fabulous! And congratulations for having the courage for brain surgery. I know it must not be an easy decision.

What procedure did you have?

Comment by Phylis Feiner Johnson — February 10, 2020 @ 3:28 PM

Goodmorning Phylis 😊. Speaking of medication I AM FINALLY FINISHED MY ANTIBIOTIC HOMECARE THERAPY FOR MY LEG!!!!!!! Thank to a reaction from the medication the neurologist started me on in Calgary, AB Canada at the beginning on December 2019!! Now just to PRAY IT IS ALL OVER WITH!!!!! I have to go back now and see my family doctor to ensure all is well. I have to after going through that since then until now I AM VERY HESITANT ON EVEN TRYING ANYTHING ELSE NOW!!!!!!! 😰😰 but on the flip side AT LEAST I AM HOPEFULLY FINISHED HOMECARE AND ANTIBIOTIC TREATMENTS!! Please be well and take care 😊🙏🏼🦅😇💕😘

Comment by Kathy S.B — February 12, 2020 @ 9:54 AM

CONGRATULATIONS! Fingers crossed that all that infection is behind you.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:09 AM

- Thank you Phylis 😊. Wow I didn’t realize I was capable of having an infection THAT LONG!!!!!!!
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — February 12, 2020 @ 11:10 AM
- Who would have thought that was possible?
  
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  Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:25 AM

Man I’ve been on megadoses of several AED’s. Back around 1999 they had my TegXR up to 2200/day. As a child I was on 1400-1600.

Keppra they had me on 5000 at one point.

I know patients who couldn’t be anywhere NEAR those doses of Teg or Keppra. One friend had to split the Keppra 250’s and attempt an increase every 2 weeks because of their reaction.

I seem to be one who builds up a tolerance. Gabapentin (for pain) only worked for a couple years and I was unwilling to increase because of side effects I already had.

Trileptal was another that I had a high dose of. I want to say 2400/day. I had to switch it to QID if I remember correctly rather than BID as initially ordered.

Comment by Travis — February 12, 2020 @ 10:47 AM

Goodmorning Travis 😊. May I please ask what the difference is with “QID’s” and “BID’s”? Thank you and please have a very good day today 😊.

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Comment by Kathy S.B — February 12, 2020 @ 11:35 AM

Boy Travis, you’ve really been through the ringer. What are you taking now?

Have you considered any of these alternatives? (Forget the brain surgery part.)

Brain Surgery Alternatives

https://epilepsytalk.wordpress.com/?p=11806&preview=true

Or these (in addition to your medication):

Epilepsy And Complementary Medicine…

https://epilepsytalk.com/2018/10/18/epilepsy-and-complementary-medicine/

Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:22 AM

I apologize I don’t mean to rant, but there are so many times I was told not to take something or to take something because it was FDA CERTIFIED!! OR NOT!! And then told I couldn’t take what was taught to me (by my great grandparents and grandma) to try and help myself (when I was older) because they don’t mix with the medications (sometimes poisons) the doctors kept prescribing me. When yet I have taken them all my life from a baby to now. As for the chiropractor it was only after seeing the chiropractor when I started going numb and tingling. Which lead me to maybe it’s a possible nerve pinch in my neck or back due to concussions or falls I incurred. The pharmacist and doctor almost make me feel bad for wanting to try marijuana for myself and even at that we still have to purchase it on top of our already daily concoction of poisons we already have to take. That is not fair to anyone from anywhere in the world they maybe in (financially or medicinally). Especially if they are already on a fixed income and the cost of live keep rising as our leaders keep endangering everyone’s wellbeing and lives in EVERYWAY, shape and form. I have literally told the doctor “just give me lorazepam for when I need it and I’ll figure out the rest as I go along and let you know. Because I can’t afford to keep being played as a piggy bank or lab rat”. Thank you Phylis for allowing me to say that and please have a very good day today. I’m sorry

Comment by Kathy S.B — February 12, 2020 @ 12:07 PM

As for my leg lol “UNPASTEURIZED HONEY” also helped 😘. What they don’t know won’t hurt them 😘😘

Comment by Kathy S.B — February 12, 2020 @ 12:09 PM

We don’t pay for unpasteurized honey as much as we do for the drugs we are told to ingest from any medical professional. Just a thought.

Comment by Kathy S.B — February 12, 2020 @ 12:21 PM

And there’s no patent or BIG Pharma mark-up!

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Comment by Phylis Feiner Johnson — February 12, 2020 @ 12:22 PM

- Or more poisons in our bodies 😘
  
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  Comment by Kathy S.B — February 12, 2020 @ 12:24 PM
- Also I was told “mint tea” wasn’t good for me. Yet now they sell it in the pharmacies and grocery store. I will admit I did have to shake my head and my husband just laughed 😂
  
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  Comment by Kathy S.B — February 12, 2020 @ 12:26 PM

For those of you who find that medications such as flu shots can trigger seizures: I asked my doctor whether it was possible to have several, spaced pediatric doses instead on a one-size-fits-all adult dose. She said that while her office doesn’t carry pediatric doses, she will look into how I might get access to some.

My previous doctor didn’t know that a medication he’d prescribed for me came in lower doses – I had to ask the pharmacist. So when you need protective meds, it pays to ask whether lower / pediatric doses are available. It might make the difference between seizure and not.

Comment by HoDo — February 13, 2020 @ 11:23 AM

Maybe I’ll try that now. I was afraid to get my flu shot due to everytime I had it in the past I got so sick it wasn’t funny.

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Comment by Kathy S.B — February 13, 2020 @ 8:12 PM

Brilliant as always, HoDo.

I don’t think any one of us would have considered that.

And as I always say: Your pharmacist can be your best friend!

Comment by Phylis Feiner Johnson — February 13, 2020 @ 3:26 PM

More desperate than brilliant – years of inadequate medical care, “I do not want to live this way!” and why waste energy on long rants? (Short rants are wonderful!) So I turned the research into technology I’d learned at work into research for my own health. Not even my best doctor knows everything or is right all the time.

Also learned a lot when my sister had cancer – if you’re small, ask for pediatric needles and other invasive equipment to save wear and tear on the body.

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Comment by HoDo — February 13, 2020 @ 4:02 PM

- I asked for pediatric needles at the hospital today and they still couldn’t hit gold. Just a tiny, rolling vein that gave them the minimum of blood and me a maximum of a swollen hand. 😦
  
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  Comment by Phylis Feiner Johnson — February 13, 2020 @ 6:30 PM
- Ya they couldn’t get I.V. In me either. However I met my doctor today and all is well so far.
  
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  Comment by Kathy S.B — February 13, 2020 @ 8:14 PM
- YAY!
  
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  Comment by Phylis Feiner Johnson — February 14, 2020 @ 10:41 AM
- I ended up telling the nurses to get to the inside of the middle of my arm to put an I.V. In and take blood out. They keep switching arms now. Mine do that too.
  
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  Comment by Kathy S.B — February 14, 2020 @ 10:28 AM
- They had to take it from the back of my wrist! Without much success, after everything else failed.
  
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  Comment by Phylis Feiner Johnson — February 14, 2020 @ 10:40 AM
- I’m sorry to hear that. I never even got my flu shot yet this year because I had that infection for so long. Now I don’t even want to think of a needle. I guess the thing is: if they must constantly change our medications why must we have to suffer EVERYTIME? Until one works.
  
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  Comment by Kathy S.B — February 14, 2020 @ 10:43 AM
- I just came home from the hospital where they had to do a second CBC, because my blood is not clotting properly.
  
  I’m terrified.
  
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  Comment by Phylis Feiner Johnson — February 14, 2020 @ 4:21 PM
- Everything will be alright Phylis 😘. I COMPLETELY UNDERSTAND YOUR FEAR AND MY BLOOD WASN’T CLOTTING EITHER!!!!! Maybe it’s your iron levels and sometimes a second CBC isn’t all a bad thing. It could also be a way for the doctors and medical professionals to confirm their diagnosis or possible thoughts as to what maybe going on. I’ve done it a lot lately and most of the time all I could is PRAY AND HAVE FAITH KNOWING I WILL BE OKAY!! And of course COME BACK TO YOUR ONLINE GROUP THEIR THE BEST I SWEAR AND SO ARE YOU!! 😘🙏🏼🦅😇💞😘😘😘😘😘
  
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  Comment by Kathy S.B — February 14, 2020 @ 5:36 PM
- I have a VERY CLOSE FAMILY MEMBER who has to constantly go for bloodwork for the same reason. Of course she’s not an epileptic, but when there are problems with her levels she sometimes requires medications to help her. I know I was secretly afraid of that myself when it kept happening to me as well. You will be in my HEART, THOUGHTS AND PRAYERS PHYLIS 🙏🏼😇🦅💞😘. You ALWAYS HAVE US (YOUR GROUP FAMILY) WHENEVER YOU NEED US LIKE WE NEEDED YOU!!!!!!! 😘🙏🏼🦅😇💞💞💞💞💞😘
  
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  Comment by Kathy S.B — February 14, 2020 @ 5:59 PM
- Thank you from the bottom of my heart.
  
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  Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:04 PM

It makes perfect sense to me that seizure meds lose effectiveness over time because, as HoDo said, our bodies change and mature as we age. A 20 yr old vs a 60 yr old on 3000 mg of Keppra for example is dealing with vastly different issues. I like your idea of it being “progressive”.

Comment by skolly9 — February 13, 2020 @ 5:44 PM

I’ve had stomachaches my whole life (to the point of where I had to almost jump out of a vehicle) one time. I’ve just never had tingling and numbness which started after I was started on generic medications (by accident) by the pharmacist. Lol even my doctor said “maybe you don’t have epilepsy anymore?”. All I could say is okay lol now “can I please get my re-fills? Or should we stop them and wait and see you on a gerney later?”

Comment by Kathy S.B — February 14, 2020 @ 10:55 AM

Well said to an really unfortunate situation.

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Comment by Phylis Feiner Johnson — February 14, 2020 @ 12:07 PM

Sending you good thoughts, Phylis.

Comment by HoDo — February 14, 2020 @ 5:37 PM

I think my fear may be over-the-top, but I’m a basket case.

I ground the coffee without the cup underneath. Result? Coffee spewing out everywhere.

Happily Arthur was there to take over. As he always is.

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Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:01 PM

- Terrified is just another emotion, my dear. Totally understandable. Think of it as a particularly explosive sneeze in response to pollen.
  
  It’s a day to rest up with a trashy novel and a cat on your lap. Your husband can bring you tea.
  
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  Comment by HoDo — February 15, 2020 @ 6:57 AM

Lol 😂 that’s why I now just wait for my husband to make coffee too!! 😘😘. IT IS ALWAYS MY FAVOURITE TOO!! 😘

Comment by Kathy S.B — February 14, 2020 @ 6:10 PM

He’s a better barista than me anyway. Puts Starbucks to shame! 🙂

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Comment by Phylis Feiner Johnson — February 14, 2020 @ 6:18 PM

- I AGREE!!!!!!! Plus ITS MADE WITH HIS LOVE TOO!!!!!!! 🙏🏼🦅❤️😊
  
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  Comment by Kathy S.B — February 14, 2020 @ 6:31 PM

Here in Canada we have “Tim Hortons” and “MCDONALDS”. My husband came into my bedroom thismorning and said to me “GOODMORNING SOMETHING SOMETHING 😃 HAPPY VALENTINES DAY I BROUGHT YOU INE OF YOUR FAVOURITE MANS (TIM HORTONS)COFFEE THISMORNING 😘 and AFTERNOON WORK I WILL BRING YOU YOUR OTHER TO MENS COFFEE!! (MCDONALDS & MY HUSBAND) 😂😂😂😂😂😘😘😘😘😘.

Comment by Kathy S.B — February 14, 2020 @ 6:20 PM

Secretly (lol almost) EVERYTIME I came home from doctor’s visits, and bloodwork I would grab my two dogs (Chihuahua’s) and my cat and I would come and laydown on my bad with all of them or them with me and I would just talk to them about everything and ALL MY FEARS and on and on. Thank god/creator/my grandma they JUST LISTENED AND LOVED ME BACK!! I found it helped give me the courage to sometimes even get on with you group and read your blog and then ALL OF YOU GAVE ME COURAGE, KNOWLEDGE AND COMPASSION!! Plus IDEAS, HOPE AND UNCONDITIONAL LOVE AND UNDERSTANDING!! Thank you PHYLIS AND HER GROUP READERS!!!!!!! You mean WAY MORE THAN YOU EVER KNOW AND HELP RE-INSTILL HOPE AND FAITH IN ME!!!!!!! For that I will ALWAYS BE GREATFULLY THANKFUL TO YOU ALL!!!!!!! 😘🙏🏼🦅😇💞

Comment by Kathy S.B — February 14, 2020 @ 7:11 PM

Reblogged this on Disablities & Mental Health Issues.

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Comment by Kenneth — May 24, 2021 @ 12:11 PM

Drs. Loshcher & Schmidt should not worry how drug side effects & not doing their jobs, are making our lives more of a living hell,, but the NEED TO FIND THE REASON/S as to WHY the brain chemistry from these drugs change for the worse in over 98% of the drugs we are to take. I saw where 1 here above had GRAND MALS from getting a flu shot & he”s afraid to get any other shots. SAME HERE as I will never make my brain to have STATUS EPILEPTICUS because of a doctor telling me I NEED TO GET THOSE SHOTS. No way, not when I remember when I did get a shot from my family doctor & 2 weeks later at 10 years old I had my 2nd GRAND MAL after my 1st 1 I had 15 months earlier. My 3rd GRAND MAL was & still is a mystery as to what triggered that while I was in bed the morning of when the GULF WAR started. STRESS from hearing of that maybe triggered that 1, but with number 4 & all after that, I learned where FOOD CHEMICALS & TOXINS & PRESERVATIVES DO & WILL trigger seizures. So really if the GLUTAMATE that is naturally in the brain never turns to GABA, then it is natural for any to all MSG’s & ASPARTAME, & the NITRATES & NITRITES that does nothing but EXCITE BRAIN CHEMISTRY, then there are seizures, to migraines to MS attacks & FIBROMYALGIA PAIN to have happen from all those good processed foods we have a collection of to eat or drink, IF you ignore the facts that THIS DOES HAPPEN & do not care about the cause more than the answer to stop seizures of all types. Seems like for me the AED EXCOPRI has been working for me for the past 7 & 1/2 months now with no seizures since 11-09-21. But why ALUMINUM is in any AED is a mystery to me, when it does NOTHING but confuse you & make your memory worse than it already is from all the AED’s that have ALUMINUM. XCOPRI 50MG tablet seems to be the 1 pill with NO ALUMINUM in it, as when I did try the others from 12.5, 25, 100 & 150MG tablets that all has ALUMINUM IN THEM, I still had some seizure activity, when I took those tablets, but still no 100% full blown seizure/s. BUT with the 50MG tablet of XCOPRI,, NO seizure activity to make me even think of a seizure getting ready to make my brain chemistry destroy itself & I have a GRAND MAL from it all. Along with VIMPAT 100MG tablet which it has NO ALUMINUM IN IT not like the 50, 150 & 200 MGS tablets that DOES CONTAIN ALUMINUM,, I felt about the same ways when I tried them back 13 years ago & I said then to my neurologist, I WILL ONLY TAKE THE 100MG TABLET IF I AM TO STAY ON VIMPAT, & so it is 13 years later with XCOPRI, as I believe now I have the BATMAN & ROBIN AED’s that I needed since 2012 & 2013. Hopefully all of this is or was something to think about.

Comment by James D — June 25, 2022 @ 1:47 PM

Xcopri provides long-term seizure control in patients with focal epilepsy https://epilepsyu.com/xcopri-provides-long-term-seizure-control-in-patients-with-focal-epilepsy/

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Comment by Phylis Feiner Johnson — June 26, 2022 @ 10:56 AM

“WHY the brain chemistry from these drugs change for the worse in over 98% of the drugs we are to take”, is the question. But who’s to bother with an answer?

Comment by Phylis Feiner Johnson — June 25, 2022 @ 3:45 PM

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