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FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
Thu, 03/10/2011 - 00:45Topic: Advocate for Epilepsy
If your new to Epilepsy be careful about the treatment you get & who your getting it from.
Show this document to your doctors if you can understand it after reading
here's the link
http://www.fda.gov/ohrms/dockets/ac/99/slides/3547s1i.pdf
You can only get Epilepsy or seizures 3 ways.
1. You are born with it.
2. You had an injury.
3. You are having allergic reactions to something internal or external (drugs, foods, air, etc)
I have learned a lot about epilepsy on my own & whatever else from my DR's.
Not only about the condition, treatments & decisions but a lot of misguided information & diagnoses.
The FDA is making a misguided "bad" choice releasing the distribution of generic drugs for patients with Epilepsy.
They are the NOT the same as Brand name drugs. Taking Generic branded anticonvolesants drugs will create seizures.
This has been being asked since 1999. Still not being recognized or further investigated by the FDA. Even when being questioned still.
Generic drugs are not the same as Brand name which this country makes & will charge to much for you to afford to bring a open market in which you will choose & create your own problem "seizures" that will go unexplained.
A good Dr will take test, diagnose your seizures, catagorize your type, and get you the right treatment if somethings found after test. Cancers, tumers ,drugs, alcohol.
You will get treatment for that type.
Takes the drivers license away for a year if you "blackout ONLY" from your seizures (pending state &/or seizure frequency) & are not in control of.
Take a medicine, seizures stops, stop taking medicine.
A bad DR. bullies a patient & will continue the use of medicine even when seizure activity is not present for over a year.
They will talk you into thinking your dying from seizures or epilepsy
"That would of been found out on your test results."
or you will suffer STATIC EPILEPTUS if you don't take medicine for epilepsy "your not".
Choosing medications is a way to sell you drugs that will destroy you not CURE YOU.
switch medications from brand to generic while seizures are under control & it will cause a problem "reoccurence in seizures"
then the Dr has an excuse to continue your use of seizure medications. & threaten your driving privileges again and again.
Knowing that this is being done.
There are also Side Effects "short term & long term"
from these medications that are going to devastate the/a patient taking them.
Yell at your Dr, cuss &%# him out if he does not listen to you if you complain of them.
Get a attorney.
I under stand some patients are harder to control than others. Some treatments, medicines will work.
But to keep trying medications for 10 years straight to find the right one because your being told it works with out a CURE, just treatments, pill, & test etc etc etc etc..
That's not a good choice.
If you are not afraid to go without a drivers license for up to a year as long as you don't "blackout" or have any " loss of contionsness"
you can live with Epilepsy, without destroying your mind from FDA drugs & being fooled by a bad Dr.
Mistakes can also cause seizures.
Good luck with your choices & decisions
Comments
Re: FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
Submitted by 3Hours2Live on Sat, 2011-04-09 - 04:08
Hi Jens the Name,
Generic drugs do "cause" more seizures than name brand. Not only is this due to wider amount variation of the active ingredient, but also due to various inert ingredients. Besides undesirable responses to changeable inert ingredients, different inert ingredients also change the bio-availability of the active ingredient, and indirectly, the half-life of the active ingredient. Different batches of the same labeled medications from the same manufacturer can also vary enough to result in return of uncontrolled epilepsy.
A doctor that is carefree enough not to be cautious of the dangers of generic versus brand name Anti-Epileptic Drugs (AEDs) is not a "good" doctor. The degree of caution leaves a wide open door on how many failed attempts with possible fatal consequences are acceptable, before a cautious and responsible decision is made without the financial being the utmost capitalist concern only.
Trying new AEDs is a weighted risk. One new, and promising, AED a couple decades ago, ended up with a very high fatality rate. Many resources note that failure with a few families of AEDs, indicate a most likely AED intractable epilepsy, that at best, can be moderated, but not controlled, even with AED intoxication. Then, new family, and very expensive, AEDs can be called experimental by the payee's standards, and blocked from wide availability.
When doctors are on the "team", that doesn't mean they're royalty that require praying to, to be within hearing from the subjects. Confounding the Cato Institute's report on the "identicalness" between generics and non-generics with the fine requirements of AEDs for each patient is about like confounding what the patient desires with what the doctor wistfully and determinately desires with the pharmaceutically ignored "patient rights", that exist only when the wind is blowing in the right economical and political direction. The current Medicaid/private-insurance guidelines are a farce, where non-medically trained bureaucrats override doctors' expensive medical decisions on any whim, despite what the patient needs or wants. "Everybody knows that the dice are loaded".
Tadzio
P.S., There are innumerable ways to "get" epilepsy or seizures. Certainly not limited to a vague "three ways". But, like experts counting votes, it might be whatever count the "Aristotelian gullible" will accept from The Grand Inquisitor. Heck, I just read from the NCBI that children often "get" epilepsy from malaria.
Re: FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
Submitted by pgd on Sat, 2011-04-09 - 11:00
Tadzio / 3Hours - Agree with your comments. Some persons can tell a large difference between a brand name and a generic - particularly in the field of epilepsy. One book which I recall which goes into exactly what is in a brand name medicine is the How To (understand) Hyperactivity book (1981) about ADHD Inattentive by C. Thomas Wild. The book is about why two FDA brand name medicines could work so differently for ADHD Inattentive - NoDoz vs Tirend - even though both medicines contained the exact amount of the listed active ingredient - caffeine - 100 mg. Turns out NoDoz had 8 ingredients (not one) and Tirend 15 ingredients (not one). Brand names are not identical; brand names vs generics are not identical. Some persons do well with brand names; others can also do well with generics too. People are different but bottomline: brand names are not identical to generics at all and in some cases it makes a big difference as to end results, number of seizures, predictable control of ADHD Inattentive, etc. - pgd
Re: FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
Submitted by jens_the_name on Thu, 2011-04-07 - 19:32
Generic drugs do not cause any more seizures than name brand. The issue with generics is not that they cause seizures or can't control seizures, but the problem arises when a patient is taking a name brand and then switch to generic (or is taking a generic and the pharmacy switches manufacturers). The actual medication contained in the generic is the same as the name brand, with the possibility of a varied amount of the medication contained in the pill.
There are certainly plenty of bad docs out there. There are plenty of good ones too, and plenty of these good ones prescribe generic medications - this does not make them bad doctors.
I have to wonder, if you think continuing to try medications for 10 or more years is not a good choice... what do you suggest? I certainly like to think that I'm doing the best by my children, who are not surgical candidates, by continuing to try new medications. There is no cure, so we do the best we can.
I can't imagine an appropriate time, and I've had many harrowing experiences with my three boys, that it would be ok to "cuss out" a doctor (or anyone else, for that matter, I've managed quite well by keeping emotions somewhat in check). Doctors can be part of our team, but if I view my sons' doctors as punching bags who I can decide to "release the hounds" onto whenever I'm feeling angry or sad... that trust will quickly dissipate.
I'm certainly no fan of the FDA, but I think, in this case, getting generics out to patients who are able to employ their use, is a good thing. I think that patient rights should include the option to not accept generic, but there are guidelines in place that will allow for doctors to write "name brand only" or "Dispense as written" on scripts so that generics are not substituted for a name brand medication.
Jen - mama of Three Amazing Boys who have Epilepsy
Generic drugs do not cause any more seizures than name brand. The issue with generics is not that they cause seizures or can't control seizures, but the problem arises when a patient is taking a name brand and then switch to generic (or is taking a generic and the pharmacy switches manufacturers). The actual medication contained in the generic is the same as the name brand, with the possibility of a varied amount of the medication contained in the pill.
There are certainly plenty of bad docs out there. There are plenty of good ones too, and plenty of these good ones prescribe generic medications - this does not make them bad doctors.
I have to wonder, if you think continuing to try medications for 10 or more years is not a good choice... what do you suggest? I certainly like to think that I'm doing the best by my children, who are not surgical candidates, by continuing to try new medications. There is no cure, so we do the best we can.
I can't imagine an appropriate time, and I've had many harrowing experiences with my three boys, that it would be ok to "cuss out" a doctor (or anyone else, for that matter, I've managed quite well by keeping emotions somewhat in check). Doctors can be part of our team, but if I view my sons' doctors as punching bags who I can decide to "release the hounds" onto whenever I'm feeling angry or sad... that trust will quickly dissipate.
I'm certainly no fan of the FDA, but I think, in this case, getting generics out to patients who are able to employ their use, is a good thing. I think that patient rights should include the option to not accept generic, but there are guidelines in place that will allow for doctors to write "name brand only" or "Dispense as written" on scripts so that generics are not substituted for a name brand medication.
Jen - mama of Three Amazing Boys who have Epilepsy