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 anti-epileptic drug 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. Isn't it time neuros and epileptologists consider these alternatives first? That's my

[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)

[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.