Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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
Re: FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
Submitted by jens_the_name on Sat, 2011-04-09 - 21:23
I think this was my point, Tadzio, anyone can have a reaction to the inert ingredients - even in brand name drugs, not just generic... but it isn't (outside of the population that this article is defining) that these medications are causing seizures. The bioavailability is different and this is, indeed, why the procedures (dispense as written) are in place. Generics have their place in the marketplace and, indeed, customers demand them.
A doctor is not careless for prescribing a generic. The fact is that in those patients who are that sensitive to blood serum levels, generics are not a good idea. The patients almost always want to try a generic to save money (in my experience) but then realize that wasn't a good idea... and are able to switch back to the name brand, armed with the knowledge that they must continue the name brand. This is good information to have.
The Epilepsy Foundation's initiative is NOT to ban generic drugs. It is merely to make sure that patients have access to name brand drugs if that is the need. AND for pharmacists to not be able to change from name brand to generic without contacting the doctor and patient.
Sadly, some of us are in the situation where we are, 10 + years later, still tinkering with medications to try to gain seizure control... again, I don't blame our doctors for this in any way, I think they've done a good job in managing my children's epilepsy. I don't bow or pray to our doctors, not sure where you came up with that, but I do view them as part of the team... my feeling that I'm not going to cuss out a doctor (or anyone else) stands regardless of the perception that people think they are gods... not the case in our world, by any means, I just refuse to lump all doctors into the "bad doctor" category because they write a script for a generic medication... that is insane. I'm all for patient rights, though... but the patient or caretaker has to be pro-active in their care and stand up for their rights and demand things if necessary.
pgd hit the nail on the head - patients are all different. If you know something doesn't work, don't use it... but blanket statements and generalizations don't do any one any good.
Have a great day.
Jen - mama of Three Amazing Boys who have Epilepsy
I think this was my point, Tadzio, anyone can have a reaction to the inert ingredients - even in brand name drugs, not just generic... but it isn't (outside of the population that this article is defining) that these medications are causing seizures. The bioavailability is different and this is, indeed, why the procedures (dispense as written) are in place. Generics have their place in the marketplace and, indeed, customers demand them.
A doctor is not careless for prescribing a generic. The fact is that in those patients who are that sensitive to blood serum levels, generics are not a good idea. The patients almost always want to try a generic to save money (in my experience) but then realize that wasn't a good idea... and are able to switch back to the name brand, armed with the knowledge that they must continue the name brand. This is good information to have.
The Epilepsy Foundation's initiative is NOT to ban generic drugs. It is merely to make sure that patients have access to name brand drugs if that is the need. AND for pharmacists to not be able to change from name brand to generic without contacting the doctor and patient.
Sadly, some of us are in the situation where we are, 10 + years later, still tinkering with medications to try to gain seizure control... again, I don't blame our doctors for this in any way, I think they've done a good job in managing my children's epilepsy. I don't bow or pray to our doctors, not sure where you came up with that, but I do view them as part of the team... my feeling that I'm not going to cuss out a doctor (or anyone else) stands regardless of the perception that people think they are gods... not the case in our world, by any means, I just refuse to lump all doctors into the "bad doctor" category because they write a script for a generic medication... that is insane. I'm all for patient rights, though... but the patient or caretaker has to be pro-active in their care and stand up for their rights and demand things if necessary.
pgd hit the nail on the head - patients are all different. If you know something doesn't work, don't use it... but blanket statements and generalizations don't do any one any good.
Have a great day.
Jen - mama of Three Amazing Boys who have Epilepsy