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I'll still never believe my epilepsy effected my family.
SO my mother and siblings saw me go down in seizures and bust my chin open and head open I was the one hurt.
my mother has seen me go status so many times but if u care u get the person to the E/R she didn't.
:e::soap::bigmouth:
Belinda
 
Belinda -
I'm sorry that your family seems so uncaring regarding your Epilepsy. Some people have a hard time accepting the fact that there is something wrong with their child. Denial is one way they choose to deal with it. Over the last 2 years, I have been working very hard to raise awareness about E and it shocks me to know that people know so little about a disorder that has been around for a long, long time. Education is so important to make people understand that this disorder is more common than they know and you can't tell by looking at someone if they have E.
 
Epilepsy has sure impacted my family.

My wife had to take on so much more responsibility when the kids were growing up. Even if she didn't care about me (she does care alot), it still impacted her life.

Times when I could not drive
Times when I was down for a day or two rebooting my brain
Taking the kids along to the grocery because I was not well enough to take care of them
Making sure that issues around the house are taken care of because of my focus issues
Not having as much money because I am popping pills all the time
This list could go on forever

Not to mention needing to save my life twice.

She was only 19 when this burden fell on her.
 
Laura,
when ever I've tried teach my mother about epilepsy she doesn'tlisten or will say you had that test. Once when she said that about a PET scan said I had it when I was small.
that would of been the the 60's early 70's my DH said it didn't come out till the 90's or something like that . she was speechless.

Belinda
 
Belinda -

I just want to let you know that I care about how E affects your life. So many times while reading postings here, I really want to reach through my screen and just hug people and let them know that they are not alone. I am sending you a great big virtual hug.

2965263384
 
salright-

Thank you, but I am just doing what God directs me to do. This forum is the second one that I joined after my daughter died from SUDEP. I first joined RAISE because they focus on SUDEP and I got to meet a couple of the women that started the forum when we went to Washington D.C. for the first annual walk for Epilepsy put on by the Epilepsy Foundation.

I think of this forum as just one big family because we all have something in common, Epilepsy. I do have a dream that someday, we can have a Coping With Epilepsy get together for those who want to meet others from here in person. I was trying to get one organized, but I guess that the timing just wasn't right. I know that eventually, when the time is right, it will happen.
 
Has anyone had any issues while taking Dilantin? I was put on it about a month ago and it seems like since being on it I've been feeling very unstable, either I'm getting very angry over little things or I feel just the opposite. I do have bipolar disorder but it hasn't been this bad for a long time so I don't know if it's just coincidence or it the medication is triggering it. I looked through a few threads but seems like Dilantin doesn't normally have this effect on people.

My doc wants me to go off the generic and try the name brand to see if that doesn't help. When I was on another medication (forgot which one) he would only allow name brand as well....are the differences between generic and name brand really that significant?
 
The question that comes to my mind is... were the 16,000 people taking placebos also suffering with seizures? I wonder how much depression and quality of life issues related to epilepsy is influencing the results here.

I found the answer:
A total of 199 studies were identified that met the trial inclusion criteria, involving 27,863 patients on active treatment and 16,029 on placebo. Of these 199 studies, 62 (31%) were in epilepsy, 56 (28%) were in 8 psychiatric indications, and 81 (41%) were in 11 other indications. ...

... Further, analyses were performed by: drug group defined by specific mechanisms of action, indication (epilepsy, psychiatric, other), type of event (suicidal behavior vs ideation), age, gender, race, setting (in-patient vs out-patient), and location (North America, non-North America). In general, there were no obvious differences in outcomes within these groupings ...

http://www.fda.gov/ohrms/dockets/ac/08/briefing/2008-4372b1-01-FDA-Katz.pdf


The FDA is now going to require warnings for AEDs:
FDA Requires Warnings about Risk of Suicidal Thoughts and Behavior for Antiepileptic Medications

The U.S. Food and Drug Administration today announced it will require the manufacturers of antiepileptic drugs to add to these products' prescribing information, or labeling, a warning that their use increases risk of suicidal thoughts and behaviors (suicidality). The action includes all antiepileptic drugs including those used to treat psychiatric disorders, migraine headaches and other conditions, as well as epilepsy.

The FDA is also requiring the manufacturers to submit for each of these products a Risk Evaluation and Mitigation Strategy, including a Medication Guide for patients. Medication Guides are manufacturer-developed handouts that are given to patients, their families and caregivers when a medicine is dispensed. The guides will contain FDA-approved information about the risks of suicidal thoughts and behaviors associated with the class of antiepileptic medications.

"Patients being treated with antiepileptic drugs for any indication should be monitored for the emergence or worsening of depression, suicidal thoughts or behavior, or any unusual changes in mood or behavior,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA's Center for Drug Evaluation and Research. “ Patients who are currently taking an antiepileptic medicine should not make any treatment changes without talking to their health care professional.”

The FDA today also disseminated information to the public about the risks associated with antiepileptic medications by issuing a public health advisory and an information alert to health care professionals. Health care professionals should notify patients, their families, and caregivers of the potential for an increase in the risk of suicidal thoughts or behaviors so that patients may be closely observed.

The FDA's actions are based on the agency's review of 199 clinical trials of 11 antiepileptic drugs which showed that patients receiving antiepileptic drugs had almost twice the risk of suicidal behavior or thoughts (0.43 percent) compared to patients receiving a placebo (0.24 percent). This difference was about one additional case of suicidal thoughts or behaviors for every 500 patients treated with antiepileptic drugs instead of placebo.

Four of the patients who were randomized to receive one of the antiepileptic drugs committed suicide, whereas none of the patients in the placebo group did. Results were insufficient for any conclusion to be drawn about the drugs' effects on completed suicides. The biological reasons for the increase in the risk for suicidal thoughts and behavior observed in patients being treated with antiepileptic drugs are unknown.

The FDA alerted health care professionals in January 2008 that clinical trials of drugs to treat epilepsy showed increased risk of suicidal thoughts and actions. In July 2008, the FDA held a public meeting to discuss the data with a committee of independent advisors. At that meeting the committee agreed with the FDA's findings that there is an increased risk of suicidality with the analyzed antiepileptic drugs, and that appropriate warnings should extend to the whole class of medications. The panel also considered whether the drugs should be labeled with a boxed warning, the FDA's strongest warning. The advisers recommended against a boxed warning and instead recommended that a warning of a different type be added to the labeling and that a Medication Guide be developed.

Acting under the authorities of the Food and Drug Administration Amendments Act of 2007 (FDAAA), the FDA is requiring manufacturers of antiepileptic drugs to submit to the agency new labeling within 30 days, or provide a reason why they do not believe such labeling changes are necessary. In cases of non-compliance, FDAAA provides strict timelines for resolving the issue and allows the agency to initiate an enforcement action if necessary.

The following antiepileptic drugs are required to add warnings about the risk of suicidality:

Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
Clonazepam (marketed as Klonopin)
Clorazepate (marketed as Tranxene)
Divalproex sodium (marketed as Depakote, Depakote ER)
Ethosuximide (marketed as Zarontin)
Ethotoin (marketed as Peganone)
Felbamate (marketed as Felbatol)
Gabapentin (marketed as Neurontin)
Lamotrigine (marketed as Lamictal)
Lacosamide (marketed as Vimpat)
Levetiracetam (marketed as Keppra)
Mephenytoin (marketed as Mesantoin)
Methosuximide (marketed as Celontin)
Oxcarbazepine (marketed as Trileptal)
Phenytoin (marketed as Dilantin)
Pregabalin (marketed as Lyrica)
Primidone (marketed as Mysoline)
Rufinamide (marketed as Banzel)
Tiagabine (marketed as Gabitril)
Topiramate (marketed as Topamax)
Trimethadione (marketed as Tridione)
Valproic Acid (marketed as Depakene, Stavzor Extended Release Tablets)
Zonisamide (marketed as Zonegran)

Some of these medications are also available as generics.

Health care professionals and consumers may report serious adverse events or product quality problems with the use of this product to the FDA's MedWatch Adverse Event Reporting program either online, by regular mail, fax or phone.



-- Online : www.fda.gov/MedWatch/report.htm

-- Regular Mail : use postage-paid FDA form 3500 available at: www.fda.gov/MedWatch/getforms.htm
and mail to MedWatch, 5600 Fishers Lane , Rockville , MD 20852-9787

-- Fax: (800) FDA-0178

-- Phone: (800) FDA-1088

For more information

Information for Health Care Professionals and Public Health Advisory: http://www.fda.gov/cder/drug/infopage/antiepileptics/default.htm

Press Release
 
Thanks, Bernard, for bringing this to my attention. Listed are nearly all of the epilepsy meds!! :0
No wonder they say mental illness & epilepsy are related. Because of the frickin' drugs!!!

Cindy
 
One of the reasons I panicked when my son told me last April he was depressed was I knew lamictal a mind altering drug. Add to that being a teenager... oiy* My main concern when I got him to a therapist was.. was he clinically depressed or situationally depressed. Thank God, it all worked out and we found someone to help my son. He is doing much better now. But PLEASE IF you feel very sad, or unwell, contact your Dr. Also please try and remember the meds mess with your mind and many times its NOT really how you feel, its the meds. Hang in there**

I wish everyone here, only the best
joan*
 
i contemplate suicide on a daily basis. i have not done it yet so i think im good
 
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I hope this topic stays in here for those who have not read it. I have read it in other support groups as well.

if one feels suicidal you need to see a pschyciatrist right away. This is not a funny thing. I do not see how anyone can take it that way. I am on 3 of the drugs. I have always trusted in my pharmacist for the side effects. That is not one that they put out.

My epilepsy is uncontrolled, as well. I have to take the pills until I find an alternative treatment. Do not take this lightly. Epilepsy is separate from suicide. One requires a neurologist, the other a pschyiatrist.
 
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People with epilepsy try to fit in with the norm, but in actual reality, it is a very rare thing. I have to constantly think of medication every day all day long. I know my medication alarms may irritate others, but I let them go anyway.

My escape from this horrible disorder has been meditation, music (like Speber!), art (hear that RobinN?) and any stress busting activity. Life is precious. Always keep that in mind and talk your frustrations out to a friend. Personally, epilepsy has spelled out my true friends. Isn't that worth something?!

We are all here to support each other in our awkward lives.

Think out of the box (not a problem here!). It's a challenge to those without E!
 
This topic of suicidal thoughts from medications is a very sensitive subject. Moderators must watch this subject very closely. Please make sure to choose your words carefully. There is a fine line between discussing sucidal thoughts and threats.

Discussing HOW a medication or disorder makes you feel suicidal is not the same as making veiled threats. We are an open forum that allows free expression with certian limits, but we must keep in mind everyone has low points in their lives. If we allow members to vent we also need to allow them their honesty. I do not believe admitting to suicial thoughts or actions are dangerous in themselves nor are they threats.

Examples

Discussion

Depakote gave me horrible suicide thoughts, I'd sit there and contimplate eating all my medication at once and just ending it all. Anyone else ever feel that way?

Threat
Maybe it would be better for everyone if I just died/left/ended it all.

Threats are an unfair burden, and you would not believe the stress it induces in members. CWE is a "family" and as a family we have those who we care deeply for. Losing loved ones because of E is horrible, but to lose loved one by their own hand is devistating. Survivers are racked with huge ammounts of guilt thinking somehow they could have prevented it.

Suicide is not honerable, it is selfish and inflicts unfathomable pain, guilt and generates copycat suicides.

 
My drugs dont cause me suicidal thoughts epilepsy does plain and simple, does any one else feel this way?
 
The idea of having epilepsy caused me a great depression, but no suicidal thoughts, however my medications was a different matter.

It may not be so much as having epilepsy but becoming so dependant and unstable with any chronic disorder that may cause suicidal thoughts. It can be devistating to deal with lifestyle changes. Some of us never adjust and our anger is pulled inward. This is were intervention is needed.

Joey, I felt devistated when epilepsy made it's appearance and with my current situation of Rheumatiod Arthritis, fibro and Severe Sleep Apnea, but the trick is learning to deal with it and coping. No one said it would be easy.

In spite of the horrible situations chronic illness have brought to our doorsteps, the shinning bright star is knowing we are not alone, there are millions suffering just as much if not more and we have managed to meet and befriend many of them here on CWE.
 
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