Drug Resistant Epilepsy

[Bernard]

Professor Jacqueline French of the University of Pennsylvania, USA, investigated patient records from 155 people with refractory epilepsy aged 16 or over, treated at the Penn Epilepsy Center, Philadelphia. They all experienced at least one seizure a month (though some experienced more than 10), and had had epilepsy for between 6 and 54 years. Each of these people had previously tried an average of 5.8 different AEDs, though some had tried up to 15.

All patients received at least one new AED during the study, either in addition to their previous regimen, or replacing one of their previous drugs. Sixteen percent became seizure free for 12 months after a change, and 21% experienced less than half their usual number of seizures for 12 months after a change.

News - Drug-resistant epilepsy - is it worth trying yet another AED?

This news will likely encourage neuros to continue trying different meds when patients haven't responded to several already, but what if the medical world woke up and realized there was an even better alternative? For a similar group of patients who did not respond to multiple drugs:

Substantial validation research has also been completed on neurofeedback for epilepsy or seizure disorder. Several controlled studies have been completed, including three condition reversal studies. Several other open trials or case series have also been reported. A recent meta-analysis (combining results of numerous separate studies) indicated that 82% of patients demonstrated greater than 30% reduction in seizures, with an average greater than 50% reduction. This outcome is all the more significant in that most of the participants included in these studies did not improve with standard medical care; for many, neurofeedback was the only alternative to surgery.

Neurofeedback Research

The meta study indicated that 82% of patients demonstrated greater than 30% reduction in seizures, with an average greater than 50% reduction. Best I can tell, this means more than 41% of patients had better than 50% reduction.

41% > 21%

IIRC, many of the studies on diets were also done with patients who did not respond to drug therapy. I don't have the figures handy, but I'm willing to bet that the success rates for the diets are more impressive than the 21% success rate of another drug. :soap: Isn't it time neuros and epileptologists consider these alternatives first? That's my :twocents:

 

[POSITIVEPERSON]

Bernard I agree with you ,its time these epileptolgists looked into diets, homeopathy anything that can help their patients have a quality life .

Riva

 

[Blessed]

Me too! It seems to me that eventually most people become resistant to the drugs Or else they just quit taking them because the side effects are so bad. Let's hope some drs. take note!

Blessed

 

[BIGMAN131307]

I'm all for trying other methods of controlling my Epilepsy. The main problem many insurance companies won't cover them. In some cases where I need a certain blood test, or specialized test the DR would fudge the system so my insurance would cover it.

IE: Code 1234 is for xray of head
Code 1235 is for xray of head w/ neck (but only the neck would xrayed)


So if DR's can help the patients get the medical insurance to pay for the alternative treatment, there is no excuse not to try them.

 

[brain]

I'll play it as the "Devil's Advocate" here.

One thing they're doing as with other drugs,
is the Pharmoakientics which explores what
the body does to the drug
and the Pharmodynamics which explores what
the drug does to the body

All in all - Pharmacology is doing everything
they can to:

1) reduce side effects

2) bringing it down as much as possible to
eliminate the polytherapy (more than 2 meds)
into monotherapy (single med)

3) attempting to make it to once a day

They've already accomplished once a week
pills, once a month pills, 3-5 day titration pills,
so Pharmacology has progressed in overall
sense in the entire field as a whole in more
areas than one.

So in lieu with the article, I can understand,
people are getting "wearied and tired"; having
been on one thing after another.

BUT I DISAGREE with Neuroscience's attitude
of 2/3 meds makes the patient "refractory
or intractable".

Here is why I disagree with it: Neuroscience
do not understand the brain 100%, and they
still have a long ways to go even though they
have progressed a long ways already, much
needs to learn and understand. Until they get
there, only then and there can they make
such statement; and only then and there will
I ever receive that Medical Statement from the
AMA, AES, ANA, etc.

There is still so much to learn and glean from.

To me - personally - for a Doctor to declare
to a patient "You're refractory / intractable"
is very discouraging, and it is no wonder why
Epilepsy is very high in suicide. Sometimes I
wonder if they need to learn to keep their
mouths shut at times. One does not need to
hear something that's a crushing blow and
that would diminish HOPE. As many people's
emotional and psychological tolerance levels
are quite varied; and this would be like push-
ing them over the fence.

Personally speaking, I've been on many meds,
and I know that the meds won't eliminate the
seizures permanently altogether, but they do
keep them at bay. But for others, when meds
just won't work at all - PERIOD.

Then surgery or other methods are options to
look into, until they come up with something.
But there will come a day that someone will
find it - the answer - the solution - the problem
and from there, they will be able to deal with it
specifically. As I feel they're dealing with this
"blindly" with using Pharmoakientics and the
Pharmodynamics.

(getting off the soap box)

:soap:

 

[POSITIVEPERSON]

I can not begin to tell you how many Drs in Mtl and NYC told me I was drug resistant. I never accepted their diagnosis and I kept looking for help. I first got epilepsy when I was 11 yrs old . I lost control 24 yrs later. In my mind I had control once I will have it again and I never gave in ,I was going to find away. And I did with homeopathy ,but they couldn't get me totally off my meds so I added the Gard Diet and I am on off my meds and szs are controled. I never cared about wether I was insured or not, like my husband said I couldn't afford not to pay out of pocket for acupuncture, homeopath, or any alternative medicine I needed.
Now I want to scream from the rooftops I am off meds and my szs are controled.

Riva

 

[brain]

Riva - You're sounding like me, being:
stubborn, hard-pressed, refusing to give up,
won't take 'No' for an answer, and will keep
fighting on ... until you find the solution! I had
Doctors who said the same thing!

Seizures Suxs Mega-Time!

 

[POSITIVEPERSON]

There's no other way to be,I wasn't brought up to feel sorry for myself.Life goes on you make the best of things till you find your answer.

HERE'S TO OUR GOOD HELATH AND OUR SEIZURE FREE LIFE FOR ALL!!!!!!!!

RIVA

 

[RobinN]

I would hope that you would never get off your soap box, because for us that are trying to understand this in order to help our loved ones cope, we need to know what it is like. I learn, and I become stronger to face those rude doctors, and teach those that come in contact with my daughter. I read about parents that tried to hide the disorder, that were unable to face the truth and I hurt for those that suffered. Yet I have been searching for a year and wonder if this is actually hurting my daughter. Would she be better off if I looked in other places for help. I dont' know... I try to turn over ever stone I find to see if the golden key is hiding under it.

Why is a child fine for 11, 14, 16 yrs and then poof life becomes one giant rollercoaster ride.

I remember when my migraines first began, I was taken to a headache clinic. The first line of attack was an anti depressant. I was a teen, and I am not sure why he thought this would be helpful. Aren't feelings good? I remember being in a fog, and watching the world pass me by. It was awful, and I said enough! So I went on to deal with the migraines, for the next 30 yrs until a very special doctor said that magnesium just might help. He told me it certainly wouldn't hurt to try. He is a well respected Dr, and yet he happens to have his practice in Beverly Hills. Of course the insurance we have won't touch him. Well.... that isn't true, I have yet to try. I would love to write them my story and let them know how much I am saving by not taking powerful drugs, and going to ER when in severe pain. Guess I should it might make me feel better.

It is extremely difficult when you don't have support within the family, school, and PCP, to try alternative treatments.
I know the saying is that you are only given as much as you can handle. Well... I am making the announcement loud and clear that I have had enough.
(...and then I read about a mom who's child is having seizures, one an hour, and I ask myself, can I really complain?)

 

[Bernard]

Thanks Robin. That was well said all around and I can relate to it very much.

 

[brain]

Management of Treatment-Resistant Epilepsy - CDC (US Government)

Management of Treatment-Resistant Epilepsy - CDC (US Government)

Here are some excerpts - the entire website is exceptional reading
and has been updated as well:

Question 2: Which methods of rediagnosing or reevaluating treatment-resistant epilepsy lead to, or can be expected to lead to improved patient outcomes?

We partitioned this question into four subquestions. The first two subquestions addressed differential diagnosis of epileptic seizures from nonepileptic seizures. The remaining two subquestions addressed the differential diagnosis of different seizure types. Whether we addressed some questions depended on the findings for previous questions.

Question 2A: Do all patients diagnosed with epilepsy that is deemed to be treatment-resistant truly have epilepsy?

This question attempts to gauge the extent of the need for rediagnosis among patients thought to have treatment-resistant epilepsy. Our evaluation of the published literature suggests the following:

* Meta-analysis suggests that up to 35 percent of patients originally diagnosed with treatment-resistant epilepsy either do not have epilepsy, or they have a combination of both epileptic and nonepileptic seizures. Because this number is derived from studies that enrolled patients suspected of having nonepileptic seizures, the actual number is probably lower.
* None of the studies included in the above-mentioned meta-analysis contained pediatric patients. Thus, the prevalence of pediatric patients diagnosed with treatment resistant epilepsy and who either do not have epilepsy or have a combination of both epileptic and nonepileptic seizures is unknown.
* These findings suggest that some patients enrolled in studies included in this evidence report may not have epilepsy. If this is the case, then our estimates of the efficacy of the interventions that we address may be imprecise.


Question 2B: Which diagnostic modalities are useful in differentiating seizure types commonly mistaken for epilepsy from true epileptic seizures?

* A paucity of high-quality evidence limited our ability to draw evidence-based conclusions about measurement of serum prolactin levels as a diagnostic tool. Consequently, we were precluded from developing diagnostic decision-model algorithms that take into account the realities of clinical practice, where a differential diagnosis is based on information from many diagnostic technologies, not just information from a single diagnostic in isolation.
* The only relevant diagnostic supported by a sufficient quantity of literature to allow evidence-based analysis was serum prolactin. The relatively low quality of this literature, however, precludes firm evidence-based conclusions. Rather, this literature only allows the conclusion that serum prolactin levels could plausibly distinguish epileptic seizures from some nonepileptic seizures. Further research is required to determine whether the performance of this test is sufficient to warrant its use in clinical practice.
* Despite the importance of video-electroencephalography (vEEG) in diagnostic protocols aimed at differentiating epileptic seizures from nonepileptic seizures, we do not draw evidence-based conclusions regarding the diagnostic performance of this technology in the present report because less than five high quality studies were identified. The fact that evidence-based conclusions were not drawn should not be interpreted as evidence that this technology is not effective or useful. Indeed, vEEG may very well have an important role in diagnostic algorithms designed to differentiate patients with epilepsy from patients with nonepileptic seizure disorders. Until more high-quality studies become available, however, the diagnostic performance characteristics of vEEG and its place in such diagnostic algorithms cannot be determined.

Question 2C: Is seizure type in patients with treatment-resistant epilepsy misdiagnosed in some patients?

* There were too few acceptable studies addressing this question to permit analysis.

Studies of Diagnostics

The lack of an accepted gold standard for the differential diagnosis of epileptic seizures from nonepileptic seizures makes evaluating the utility of any given diagnostic problematic. This is because of the difficulty in verifying that the diagnostic decisions that result from the use of the test are correct. Given this lack of an acceptable gold standard, attempting to determine whether the use of a diagnostic improves patient outcomes may offer a fruitful avenue for future research. Such an approach requires determining whether the use of the diagnostic of interest ultimately leads to improved patient outcomes and, as a consequence, requires a prospective, randomized controlled trial.

Because a diagnosis of epilepsy is not made based on the findings of a single diagnostic technology, studies are needed to evaluate the effectiveness of different clinical algorithms that utilize data collected from combinations of diagnostic technologies. Again, this approach would require a prospective, randomized controlled trial.

Question 6: Which social, psychological or psychiatric services for treatment-resistant epilepsy lead to, or can be expected to lead to improved patient outcomes?

* There were too few acceptable studies addressing this question to permit analysis.

Question 7: What characteristics of treatment-resistant epilepsy interfere with ability to obtain and maintain employment, or attend and perform well in school?

* There were too few acceptable studies addressing this question to permit analysis.

Question 8: What is the mortality rate of patients with treatment-resistant epilepsy?

* Persons with treatment-resistant epilepsy are approximately 2 to 10 times more likely to die compared to people in the general population. This excess mortality in persons with treatment-resistant epilepsy is largest among younger individuals.
* Sudden unexpected death appears to be a major cause of death among patients with treatment-resistant epilepsy, representing 6 percent to 55 percent of the total deaths in studies that reported relevant data.
* Drowning rates are higher among treatment-resistant patients with epilepsy compared to the general population. Higher quality evidence is needed to determine the precise magnitude of the difference in drowning rates.
* There is insufficient evidence to determine whether accident-related mortality, or mortality due to pneumonia, aspiration, suicide or cancer is higher among persons with epilepsy compared to the general population.

HOME PAGE FOR EPILEPSY - CDC (US GOVERNMENT)

 

[Bernard]

Refractory Epilepsy

Emphasis mine:

We assessed the frequency, causes and consequences of erroneous diagnosis of epilepsy, and the outcome of patients referred with `refractory epilepsy', by retrospective analysis of the case records of 324 patients. The sample was divided into those exposed to anti-epileptic drugs (n=184), of whom 92 were said to have refractory seizures, and those who had not received treatment (n=140). The latter group is reported elsewhere. The overall misdiagnosis rate was 26.1% (46/184), with incomplete history-taking and misinterpretation of the EEG equally responsible. Side-effects were reported by 19/40, while unnecessary driving restrictions and employment difficulties were encountered by 12/33 and 5/33, respectively. Of those labelled `refractory epilepsy', 12 did not have epilepsy. Sixteen were rendered seizure-free and 25 significantly improved by the optimal use of anti-epileptic drugs or surgery. Diagnostic and management services for patients with suspected and established epilepsy are suboptimal, with psychological and socio-economic consequences for individual patients. The resulting economic burden on the health and welfare services is probably substantial.

The misdiagnosis of epilepsy and the management of refractory epilepsy in a specialist clinic

 

[Ruth]

In Europe, it is called NEAD, Non-Epileptic Attack Disorder. The fact that they use the word attack, shows that something is going on in the brain. Medicines will not help it does not mean that Alternative Methods will not work. I agree with Robin.:agree:

I read an article that said intractable epilepsy and refractory epilepsy were the opposites. Medicines would work with epilepsy and the other, medicines would not work with epilepsy. Apparently, I got the wrong information.