Epilepsy medication proving ineffective over time

[Bernard]

I think this will not surprise too many folks who frequent epilepsy related forums as personal stories along these lines are quite frequent:

Epilepsy medication proving ineffective over time

Patients showing tolerance to traditional drugs

Hannover, Germany - September 06, 2006 -- A new critical review by Dr. Wolfgang Loscher and Dr. Dieter Schmidt shows that repeated administration of antiepileptic drug (anti-epileptic drug) 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 anti-epileptic drugs was traditionally thought to be small. Loscher and Schmidt, however, conclude that while anti-epileptic drug 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 anti-epileptic drug 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 anti-epileptic drugs, however, Loscher believes that anti-epileptic drug 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," Loscher says, "tolerance to the effectiveness of anti-epileptic drugs 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 anti-epileptic drugs. The possibility exists that many patients are being initially over medicated poses a significant challenge to doctors and scientists working toward effective seizure control.


###
This study is published in the current issue of Epilepsia. Media wishing to receive a PDF of this article please contact medicalnews@bos.blackwellpublishing.net

Dr. Wolfgang Loescher is Professor and Director of the Department of Pharmacology, Toxicology and Pharmacy at the University of Veterinary Medicine, Hannover as well as Head of the Centre for Systems Neuroscience in Hannover, Germany. He can be contacted at wolfgang.loescher@tiho-hannover.edu

Epilepsia is published on behalf of The International League Against Epilepsy (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.

Blackwell Publishing is the world's leading society publisher, partnering with 665 academic and professional societies. Blackwell publishes over 800 journals and, to date has published more than 6,000 books, across a wide range of academic, medical, and professional subjects.

[Birdbomb]

I hope you don't mind if I steal this article. It just goes to show you, doctors can be taught what patients have known all along!

[Bernard]

^^ No, I'm happy to see the word get out (besides, I have no claim ont it - it's a press release with free redistribution rights).

BTW, I already posted an article on this forum which I found referenced on your site today.

[RobinN]

For those of you having difficulty with your meds doing the "trick" lately, this article might be of interest.

[Heather]

This article may be true for some, but not everyone.

I've been taking lamictal for approx 15 yrs. It still helps control my seizures. I notice a difference in my seizure control, even when I miss a partial dose. I take 400mg in the morning. If I take 200mg (one less pill) instead of 400mg, I start having more auras. They get longer and more intense. And sometimes I get nervous that I'm gonna lose conciousness, if they get too long and intense. If I didn't take lamictal, I'd prob have complex partial seizures and tonic clonic seizures regularly.

I've been taking keppra for almost 7 yrs. My seizure control is still getting better. I've never taken a drug that controls my seizures like keppra and doesn't level off after a yr or so. Used to, if I had extreme lack of sleep or if I got really upset or stressed, I'd have a complex partial and/or tonic clonic. Now if that happens, all I have is a few more auras. I don't lose conciousness. Even the increase in auras doesn't happen as much as it used to.

The only time I ever went status, is when one of my "former" neuros tried to wean me off of meds. I didn't go off of meds cold turkey.

I've been taking meds for over 35 yrs. If I wasn't taking meds, I wouldn't be here today.

So, while it may be true for some people, it's not always true for everyone.

[RanMan]

B.B. You nailed it.
Like most additives to your body, it's only logical that over a long period of time, it would start to lose it's effectiveness.

Randy

[brain]

In Pharmacology (I am writing this out of respect and love of
my father; a very long time Chief Pharmacist, of Bay Pines
Veteran's Hospital, who passed away from both AD and PD
when Neurologists kept saying you can't have BOTH AD and
PD - but he did and lost the battle quickly, and died shortly
after he retired) - some medications hold tried and true over
the years and their formula and dosage can remain untouched
no matter what the dosage is set at.

However, do medications LOSE their effectiveness? Yes, No,
and Maybe. The implications lies here:

• The patient's health - can improve or decline. The patient's chemistry and hematology can also change as well as the patient's age playing the factor as well. Whereas the need for the medication(s) titration to be increased or decreased. In some cases, patients do develop: tolerance, sensitivities, resistance, adaptions (different from being "tolerated to the medication"), and in some cases - it just becomes unknown after extensive lab-work up (everything comes up clean, but the medication just is no longer compliant.
• Medication and Patient's compliance - the two and two must work together per their Physician's strict orders. Many patients are the "guilty" factors in this area, and several major areas are these: 1) failure to take them in a timely fashion (skipping dosages, stretching them out due to inability to afford them or shortages, not wanting to take them, forgetfulness, etc) 2) Not informing their other Physicians of all their medications they are taking PLUS (<--- note emphasis) any over the counter (OTC) remedies they are taking which includes herbal supplements, vitamins, GNC (General Nutrition Centers - which today we know it as "Health and or Nutrition Shops or Shoppes or Stores or Centers or Centre) which can have a serious effect on their medication(s) they are on which range from: 1) Drug - Drug issues 2) Drug - OTC issues 3) Drug - Herbal / Vitamin / GNC issues - which "I" (me) personally have phrased it "Clash of the Titans" in an affectionate way because that is exactly what it does and is the best way to put it all in illustration as a whole. Many patients do not realize the "risk factors" being involved; especially many are not even FDA (Federal Drug Administration) approved (!) and they wonder why the medication(s) are not functioning properly or working as it should.
• There are "No Safe Medications" on the market - all medications carry a risk, and the Physicians have to weigh the pros and cons and what benefits the patient the best overall to deal with the issue.
• Not ALL medication(s) are FOREVER. Some are short term only (range varies depending on the patient and their medical condition(s) in perspective) and others, there is no choice and have to be on it for life or they will be endangered if they do not take such daily dosage of medication(s). Such patients who are on "For Life" Medication(s) also carries a special card or an ID Card, and are also frequently monitored as well - a good example of the huge population of those with cardiac valve replacements who have metal valves as known as St. Judes - who have to have Warfarin / Cumadin - they have to take it and be checked frequently on the lab work. And if they don't - they run into complications and die. (That is an example of reality)
• Some medications - when there are no other options, the risk is high just as much as the complications, usually are reserved for very sick patients which we know them as "terminally ill". But it does not mean it is "forever", many of them will make the patient sicker before they ever improve, and many have "Won the Battle" and became survivors.
• When surgery or no other alternatives are a choice, medications have to give way - Physicians do not like it any more than the Patient does, but the Physician's role is to try to make the Patient's life better - with hopes that something better would come soon. Some patients can handle these medications with no trouble, while others struggle. And do Physicians cry? Yes. Do Physicians get frustrated? Yes. They try everything as much as possible because they are doing what they love, they want to see their patients well, there is nothing more that they hate the most is seeing their own patient all "doped up". Yes, it is true, there are genuine Physicians out there that goes out of the way, just for some of their most sickly patients, trying to find something for the best for them. And when they pass away, it hurts. They spend hours reviewing of what did they do wrong (they did nothing wrong) and some even puts the blame upon themselves because they saw themselves as failures even though they KNOW they had no control over the medical problems the patient had. (Just to show how much of a heart of gold the Patient's Physician had.)
• Pharmacist and Physicians whom the Patient has an establishment with - that is, sticking with one place; is the best thing in the world. The patient does not see this, but the rapport between the Pharmacist and Physicians is deep. The Pharmacist can also vouch and relay messages to the Physicians when they catch something - and things can be fixed before the Patients life can be endangered. The Pharmacist himself/herself - can stop a patient from buying specific OTC item(s) because they know it will interact with their meds. Relationship is that deep and vital, and patients never even realize this. Some of the Pharmacists are also Medical Doctors themselves (who have extended degrees - expanded knowledge) and can act on emergencies if necessary. Even if they are unable to get a hold of your own Physicians, they can vouch in on behalf and cover the base and alert your Physicians so that they can make the move once they receive the message! (Are you surprised?) {Note: Many major Pharmacy chains have a Medical or Medical Certified Doctor / Pharmacist in their store, but not all of them - it pays to find out where they are and stick with it over there - you just never know when it "might" come in handy.}
• Then there is a question of "Maybe" - did the medication or medications loose their effectiveness? Sometimes one will just not know the answer. There have been times patients had been removed from such medication or medications, and later reintroduced back on it and no further problems. It could be for various reasons: 1) Change in patient's lifestyle 2) Was alcohol, illegitimate drug(s) used 3) Stress (which can lower or raise the medication's influence 4) Change in behavior, attitude, aging, overwhelmed, etc 5) Change in patient's health (for better or for worse) (and there are more that would consume this realm.)
• The question of "YES" - when a patient develops a resistance, allergic reaction, side-effects, tolerance, etc - and a known cause is traced without any questions about it. However Physicians tend to be wearied about those of "unknown" reasons, but some moves to the "YES" area as a pre-cautionary measures if the patient already has a list of such. (For the chances are, if the patient has a list, then there is a reasonable doubt that the YES applies here too whether or not it can be proven.) And then there is a YES because of the medication's compliance issue with the patient - it is not agreeable with the patient, but it flows with the above emphasis per se.
• The question of "NO" - the drug is not known to have any historical establishment of anything in the background that is deemed as life-threatening. Many Physicians often turn to look at the other medications that the patient might be on that is causing the Drug-Drug interaction more so than the medication itself. Which would explain why the titration of increase and or decrease of dosage of this or that or a complete adjustment of tirade of medications - trying to balance out the whole assortment that the patient is on to level things out.

I know what I have posted is quite some reading there, but those are
the many things that my father has taught me, and they still hold tried
and true to today. And I do hope you have learned the same thing that
my father has taught me. If you have to - print it out, it may one day
even save your own life or your own family member's life. This does not
necessarily apply to antiepileptic drugs - it applies to all prescription
drugs out there. Even if you were to obtain a book and do a research
yourself, after all the comprehension reading, you will find that what
my father has said aligns right up to the dot and he's added even
more - He even told me it is very difficult for a patient's own Physician
to go to his beloved patient's funeral, it hurts him (or her) that bad.
For the Doctor must carry on ... Do Doctors ever forget about their
patients that had passed away? NO - not their long time established
ones that they have had rapport with so closely, the relationship
was so profound. A big burden upon a Physician himself (herself)
to hold dear to his (her) heart.

Note: I changed the emphasis to add "her" because back in those
days, Female / Women Doctors were excessively scarce.

[Cint]

[LIST]
[*] Medication and Patient's compliance - the two and two must work together per their Physician's strict orders. Many patients are the "guilty" factors in this area, and several major areas are these: 1) failure to take them in a timely fashion (skipping dosages, stretching them out due to inability to afford them or shortages, not wanting to take them, forgetfulness, etc) 2) Not informing their other Physicians of all their medications they are taking PLUS (<--- note emphasis) any over the counter (OTC) remedies they are taking which includes herbal supplements, vitamins, GNC (General Nutrition Centers - which today we know it as "Health and or Nutrition Shops or Shoppes or Stores or Centers or Centre) which can have a serious effect on their medication(s) they are on which range from: 1) Drug - Drug issues 2) Drug - OTC issues 3) Drug - Herbal / Vitamin / GNC issues - which "I" (me) personally have phrased it "Clash of the Titans" in an affectionate way because that is exactly what it does and is the best way to put it all in illustration as a whole. Many patients do not realize the "risk factors" being involved; especially many are not even FDA (Federal Drug Administration) approved (!) and they wonder why the medication(s) are not functioning properly or working as it should.
[/I]

This may be in some of the cases, but in others, the Physicians don't really listen to the patients or take into consideration the drug's side effects, etc. and then they're too eager to push more drugs, therefore supporting the pharmaceuticals who are big time $$ making factories, rewarding the doctors in exchange. Sometimes the drugs can be more harmful, bringing on more health issues (this is what happened in my case), and in others, they can be deadly!

[Pinky]

I'm extremely disillusioned with the entire medical fraternity. I've seen a few different doctors. Every time the seizures change (I've now got jerks on top of everything else) my meds are changed. I've had to go on a anti depressant because my brain chemicals are all screwed up and I just wanted to end it all. At one stage my dr changed the meds from 400m tegretol to 1000m epilem, overnight. No phasing in or out of the old with the new. Just BAM, stop this and take that.

I've decided that they can all go get stuffed. I've stopped my meds completely and have made nutrinitional changes and am taking a lot of different additional vitamins. Robin, you're help in this area has been absolutely priceless. I've had a look at so many of your posts since I decided to do this, and I've learnt quite a bit.

I did not consult my dr before stopping the meds. I went off about 2 months ago, and haven't had a single simple, complex or tonic since then. It seems I'm stuck with the jerks, but they only happen occasionally now.. late at night when I'm tired. My moods have stabilised since I stopped the meds, and my memory has returned. I can actually wake up in the mornings now and don't feel deadtired even when I've slept for 10 hours!

Meds suck (for me), and I seriously dislike most doctors.

[Bernard]

... I went off about 2 months ago, and haven't had a single simple, complex or tonic since then.

[RobinN]

I've stopped my meds completely and have made nutritional changes and am taking a lot of different additional vitamins. Robin, you're help in this area has been absolutely priceless. I've had a look at so many of your posts since I decided to do this, and I've learned quite a bit.

I have to say you have put tears in my eyes this morning.

It has made such a difference in our life as well. Next week will be three years since we were given this wake up call. I guess I have to feel blessed that it occurred, because it might have been something more serious if left unchecked. We have certainly had our share of poor medical care. I am learning not to be angry, as I believe we are living in a period where new ideas, answers, medical practices, are changing conventional medicine for the better. We need to give it time to see the transformation. We will also see Pharma put up walls, and Gov. getting in the way. But with focus, anecdotal evidence, and determination we will see health win.

Posts like this make all the research and hours searching and sharing information, worth it. Thank you for saying so.

[Pinky]

Hi guys,

I've been a bit absent of late, I know. I just wanted to update everyone. I haven't taken a single pill for epilepsy since my last post, and I've been seizure free for more than a year. I get some severe jerks when I get tired, but that's all and I can deal with that. I would like to thank everyone who helped me through this when I was diagnosed, and I can only hope that other people would be as lucky as I am. Stay strong guys, there is hope.

Pinky out

[Nakamova]

Pinky --

It's great to hear that you are doing well.

[Bernard]

Fantastic news. Thanks for coming back and giving us an update. It's always nice to know that long absences are the result of good news.

[epileric]

Thanks Pinky, It's really encouraging to hear others doing as well as you are.

[Seruzies]

I'm printing this article and taking it to my Dr. I've been on Lamictal for years and think it's become ineffective for me. My Dr doesn't want to switch me to a different drug but, I want to try Dilantin. I brought this same subject up to him and all he did is add Keppra to the dose of Lamictal I'm already taking. I want to find one drug that works and stick with it. But then again, I'm just a dumb patient that is supposed to shut up and do whatever my Dr tells me to do. I've been given all the tests for surgery but, I want to try the drug that I liked before I let my Dr crack into my skull.