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PurpleRose 02-03-2008 11:14 AM

FDA Warning re AED's
Hi. Just wondering if anyone else happened to see the 1/31/08 FDA report about a whole slew of antiepileptic medications which their studies have shown to potentially increase the risk of suicide among those taking them. My husband heard it on the radio and told me, and I did a search online and found it posted on 2/1/08. Both of my drugs are on that list!! (Tegretol and Lamictal.) The FDA said they're going to add this warning soon to all (14?) drugs. What in the heck are people like us--who suffer depression on top of epilepsy (like I do)--supposed to do?? This is frustrating and scary. :confused: :mad:

neurowreck 02-03-2008 04:38 PM

Re: FDA Warning re AED's
It's sort of a catch 22 with almost any drug....

When anybody has any sort of effects from what they figure is a drug, regular, ol family doctors, on up to research MDs or PhDs have to fill out adverse reaction forms and send them to the person might have the problem (along with many other problems), but whether or not it's actually proven to be related, the 'side effect' or warning has to be announced/listed. A few hundred thousand people could have been fine.

It could be from pre-existing medical or psychological issues, or interactions with other medications that are impossible to test for (can't hit every possible combination of drugs during the testing process).

Tegretol has been around for decades....and NOW they're associating it with suicide? Seems there has to be other stuff going on, that isn't available (I also saw the report on TV). Some of the newer drugs I"d be more leary of (though for some, they're miracles in a bottle- know Neurontin was for my autonomic disorder when it was fairly new- not the seizures- but didn't hurt them either).

Wonder what other meds these folks were on, and what other diagnoses they had.... it's always good to know the warnings, but it doesn't take much for the FDA to have to list the negative reactions.....

Travis from MN 02-04-2008 02:25 AM

Re: FDA Warning re AED's
I was slightly shocked when I found the FDA text for a medication (name not being mentioned) my Dr suggested, but never put me on. It (the full medication print-up) even had the "waiver form" along with so the doctor, and pharmaceutical company are not at fault for the potential known side effects of this AED cannot be held against the clinic, doctor, pharmacy, or the maker of the medication.

The three page bold warning on the front did slightly put me off. After reading all twenty some pages and now being bug-eyed half in fear about the known problems, the other was why in tarnation would my Doc change me to a last resort med. I ended up calling my prior neurologist and thankfully he concurred with me that it was NOT the medication for my situation.

I noted they added one to Tegretol last year or sometime before that was not there last I checked... just like saying you *may* find water to fill a cup on Mars if you look hard enough. That was the risk factor for the warning; but I guess Legal must have advised them to be careful.


Travis from MN 02-04-2008 02:16 PM

Re: FDA Warning re AED's
Back to the root of the post. The primary , and unpredictable issues are we will be on medications for the rest of our life in most cases when being treated for seizures. It is not the medication always, however they (professionals) need to look at the patients state of mind, and observe that over time (at least 3 years) to see if there are changes. As well as come back yearly, and seasonally and check on the study persons for another 5 years.

Having to depend on medications to suppress or treat your condition for a lifetime does have a mental effect. That may be what they are trying to get at. Compared to the john doe's that are not needing to take any medications daily.

We are not physically dependent on the medications, but we need them to treat our conditions. It is not an elective medication for us. It may be the feeling of being "chained" to the medications that causes some of the emotional troubles for persons with similar conditions (needing daily medications).


neurowreck 02-04-2008 02:43 PM

Re: FDA Warning re AED's
Very true..... it's like the deal with adolescents and antidepressants....HELLO....they were bummed to begin with, or wouldn't have been on the meds. It's still incredibly sad, but this is the age of not dealing with "stuff happens", or taking personal responsibility for things....sue for coffee being hot, not being careful to not get burned. :)

PurpleRose 02-04-2008 04:16 PM

Re: FDA Warning re AED's
Thanks for your replies, albeit a little critical sounding in tone, if not condescending. It's not that cut and dry. Nothing is that black or white. That's why the FDA does so many studies--many studies--as in ongoing, with lots of different people, for long periods of times. Their studies even said they've been looking closely at these AED's for quite some time now. This wasn't just a sudden revelation on their part, one of those well, these drugs could be a risk, so golly gee, why don't we just add those warnings on just to be safe. It's a real concern, for a lot of people, and one that shouldn't be taken lightly.

Sherri5186 02-06-2008 05:26 PM

Re: FDA Warning re AED's

I just got an email this evening from the Epilepsy Foundation
about this FDA warning.They seemed to talk alot about the
Keppra and Lamictal,but,it did say ALL anti-seizure medications.
I think this is a great thread to have started for all those who
do not get an email like I have.

Take care,Sherri

neurowreck 02-07-2008 12:22 PM

Re: FDA Warning re AED's
I agree that the warnings should be added.....but not given the cable news press that makes it sound like they're potential nuclear bombs in a persons' system for the general public..... unless they have p r o o f that the drugs are connected to the sucicidal acts/behavior, that's a horrible 'accusation'....but also something to be monitored. Just give it to the pharmacists and MDs who prescribe, and let them be the guides..... they know the individuals they prescribe for better than the govt does.

The FDA does as many tests as it can before financial pressure from investors speeds up the testing process, or someone silences the warnings (Vioxx??? Fen-Phen???? and who knows how many others)......gotta remember the FDA is a govt organization, and is as consistent and dependable as wish they did do adequate testing. No meds are tested on kids (understandably so), yet are prescribed for them all the time....
Just now getting warnings about cold meds (which have been abused by kids for years).

Travis from MN 02-07-2008 04:42 PM

Re: FDA Warning re AED's
You could say I am somewhat biased when it comes to the drug warnings. I've been on medications before I started preschool (so all of my life). I've seen the warnings change, and have even been told there was no difference between the generic and brand name.

Having gone through experiences with medications you learn (sadly) from your own experiences with bad orders from Dr's. When a simple correction would have been common sense. It took me going to the Emergency Room even after calling my Neurologist and getting waved off to have the issue fixed.

I guess I see different levels of medications. Some are higher risk (greater chance of being abused) than others (little to no chance of abuse).

They started me out on a medication that once was highly abused. As a kid obviously I was not in that grouping to even think that way.

The other factor I'm somewhat surprised at is they don't suggest (not mandatory) a psych evaluation every now and then for persons who are on long term medication regiments. Base the potential evaluation on how the person is acting. That could catch possible "at risk" people that some of these warnings may be for.

Some people panic when they read the full warnings. It's too much technical information to ingest. I can understand it, but I only read it when I may be placed on a new med so I know if I have to avoid any foods, what to watch out for to note side of reactions, and information of that nature. I'll mentally make note of medications that are reactionary, and the level ranges.

It's the small warnings that are 1/2,000,000 that cause people to worry for a potential drastic side effect. Or another med was 1/250,000. Thats pretty rare chance when the only known cases were 7 EVER. If you kept reading it said Genetics may have been a contributing factor.

Thats why it depends on the personality of the person seeking the data. If they read the material they may all of a sudden think "thats me". The technical texts are only for those that can read it and not obsess over it.
If you want the basic watered down understandable version have your pharmacy print out a 1 page generic version. That way you miss 95% of the technical information and only get what you really need.

Sherri5186 02-07-2008 04:58 PM

Re: FDA Warning re AED's
Hi neuro,

I agree with you that they should not make an announcement
on TV about it and then have everyone thinking just because
we are on an anti-seizure med. we will be trying to commit suicide
next.The doctors and pharmacist do know the patients best and
should be left up to them,after all we are all different.
Take care,Sherri

neurowreck 02-07-2008 07:57 PM

Re: FDA Warning re AED's
Agree with Travis that the pharmacy info is quite adequate for the vast majority of people. And with the idea of routine risk assessments for potential abuse.

I have access to a personal library of professional information of drug effects, side effects, etc that I needed when I was still able to work....most of the stuff I'm on, I've been familiar with for ages, and/or been on for ages. If I get new meds (most for non-epileptic disorders), I tend to not look information up unless I have new symptoms.. I do ask the pharmacy about food interactions (I hate having to give up grapefruit !!), but little else, since I don't want to "think" I have some reaction. I've had enough real reactions to meds to not want to have another 'fail'.

TV has become a medical babysitter, and suggestor of medications for things that could end up being more serious.....the wrong doc, and someone asking for meds for what sounds like the problem a med is good for could be a disaster if it's a more serious all of the reflux medications- those symptoms can also mimic heart attacks- not all heart attacks hit fast and hard....some are even 'silent' and different between men and women....

Sherri5186 02-08-2008 05:49 AM

Re: FDA Warning re AED's
Yes,I too agree with Travis that the info. you get from the pharmacy
is just fine for most people.I also miss eating the grapefruits.
I just read recently online that any citrus food can cause seizures,
yet I have been drinking orange juice for years.
Take care,Sherri

Canada eh 02-09-2008 07:50 AM

Re: FDA Warning re AED's
I read an article on the internet about this too and one the meds listed is the one by daughter takes. I didn't panic and thought I would just watch for any behaviour changes, but she has taken this before and we didn't notice and depression or suicidal tendencies...Anti seizure meds have enough side effects to make anyone depressed. Weight gain, liver damage, dizziness, drowsiness, the list goes on.
I agree with everyone who said you have to think about the patients frame of mind before they start the medication. I'm sure for a lot of people who currently take these medications, they are already starting to feel depressed just by hearing about all of this.
I think our neuro put it best when she told us, put up with the medication and side effects or put up with the seizures.
Although I personally don't take these drugs, I can sort of relate, I take a medication that has recently been found to cause heart attacks (this was a big news story too..) I talked to my dr about it and he thought the benefits outweigh the risks for me and didn't really believe the study was conclusive, so I still take it and freak out everytime I get a pain in my chest...but I have to trust my doctor.........

Travis from MN 02-09-2008 09:13 AM

Re: FDA Warning re AED's
Sherri, can you type in what you were making note of on citric fruits? I am well aware on grapefruit being on Tegretol; however my doctor did tell me that orange was NOT a problem. Their pH levels are different. That is the cause of problem that I am aware of.


TopamaxKillsMe 02-09-2008 11:59 AM

Re: FDA Warning re AED's
Hey Sherri,

Do you mind cutting and pasting that email you got from the Epilepsy foundation?

I find it very scary. When I was on dilantin, I suffered from depression but not to the point that I'm at now. Ever since I started Topamax it's been a downward spiral. Then Keppra which made me insane. Now Lamictal which has curbed my rages but yesterday I felt depression again.

I have tried suicide many times since 2005 (when i went on Topamax) and twice since being on the Keppra.

I was such a happy child. I look at old movies and pictures and I can see the joy in my face. It is very disheartening to look in the mirror now and wonder what ever happened to that little girl.

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