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Neurologists Don’t Know the Dangers of Anti-Seizure Migraine Preventives

Results discussed at a recent American Academy of Neurology (AAN) conference has critics blaming the FDA for not effectively disseminating important information to neurologists who use anti-seizure medications with their patients.  This is important because anti-seizure medications are some of the most popular preventive medications used by primary care doctors, neurologists and Migraine and headache specialists for the prevention of Migraine, as well as other pain related disorders such as facial neuralgias etc.

4,627 AAN neurologists were emailed and asked to participate in an online survey.  The survey asked the participating doctors multiple choice questions about four recent FDA warnings on anti-epileptic drugs (AED’s).  505 physicians responded from all 50 states.  96% of respondents were board certified, and their average number of years in practice was 22.4. The results of the survey were quite interesting.

Although 80% of the respondents were aware of the warnings, their knowledge about the specifics was varied.

Curious about those questions?

  • Question one was about screening patients of Asian descent for a particular genetic marker called HLA-B*1502 (1) before prescribing a drug called Carbamazepine.  If this drug is given to someone with the mutation, there is an increased risk of a serious or even potentially fatal side effects called Steven-Johnson’s syndrome and toxic epidermal necrolysis.  About 29% used the drug in Asian patients, but less than 25% of respondents had tested their Asian patients considering Carbamazepine for the gene.
  • Question two was about the reported relationship between suicidality and the use of 11 anti-seizure medicines.
  • Questions three addressed the labeling change and need for counseling for women considering or using valproate because of the increased risk of malformations if they took the drug while they were pregnant.  This was the least known detail among those surveyed (31%), although most did counsel their female patients about pregnancy while on the drug.
  • Topic four questioned the doctors about the FDA’s communication regarding the safety of the use of valproate during pregnancy and the increased risk of lowered IQ in the children after birth.  Less than half those surveyed knew the degree of lowered IQ with valproate.  Fully one third of respondents did not know there was any association found with valproate and cognitive ability.

Those questioned who did the best in the survey said their information came not from the FDA notifications, but notifications from specialty organizations.  The more knowledgeable respondents took care of a higher number of epileptic patients each year. Less than 5% of those surveyed wanted to continue with the current unchanged system of notification.  Most of the doctors said they preferred the prospect of creating a formal notification process through their professional organizations, or through emails that detailed product insert information, and the research leader Susan Shaw, MD  said, “We suggest that the AAN or another similar organization consider a formal electronic safety update system.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

1. Man, CB., Kwan, P., Baum, L., Yu, E., Lau, K.M., Cheng, A.S., Ng. M.H. "Association between HLA-B*1502 allele and antiepileptic drug-induced cutaneous reactions in Han Chinese”. Epilepsia. 2007 May;48(5):1015-8. Available at: 2. Greb, Erik. "One-Fifth of Neurologists May Not Know About the Risks of Antiepileptic Drugs.” Neurology Reviews. 2013;21(5):11-13. Available at:


  • Kim Smith Lawson
    6 years ago

    I know that the neurologists (who have not been trained as headache specialists) don’t have near enough educational time spent to be trained in Hemiplegic Migraine. I did find one who recognized another health problem in me, sent me to an endocrinologist, and that problem has been addressed. Unfortunately, the neurologist only knew enough about Hemiplegic Migraine that when I kept reacting negatively to anti-seizure meds, he told me to go to the endocrinologist, and quote “I didn’t have to come back to his office.” I appreciate that he was professional enough to let me know in a kind way,that he’d done all he could. He even told me to stop taking the topamax. It took longer than he thought for me to taper off, and since I couldn’t go back, I didn’t really have anyone to ask how to do this successfully. The pharmacist gave me a general idea. He thought I could come off 100 mg in three days. It took 2 months longer to taper for me, with a replacement of depakote. The week I had zero in my system was traumatic the first few days, but tolerable. I don’t know about everyone else’s experience, but I do know that it took forever to find a med that would help, but wasn’t prescribed by a neurologist. The choices must abound for anti-seizure meds, but I look forward to the day that migraineurs have more specialized medication for different migraine types.

  • iwg13
    6 years ago

    I took Gabapentin for 3 months this past winter. My balance and memory both started to go.
    I fell backward down a flight of stairs,up into the house over 2 steps and from the kitchen down 2 steps.
    I also began forgetting things. What day it was, appointments were missed, because of it. It took me awhile to put it together. Even the pain specialist missed it at the first appt., after the falls began.
    Could be interaction with my fentanyl patch (degenerative discs/arthritis).

    I also had a problem with Topimax I don’t think I spelled it right… I became very delusional within the first 24 hours.

    Both meds were given to find a replacement for narcotics. Including for the migraines.

  • caradrouin
    6 years ago

    I feel that Dr.s are responsible for knowing about the treatments they are prescribing.

    My Neurologist wanted me to try a common OTC medication. I replied that aspirin made me worse. But did I try this? No, aspirin makes me worse. Around and around, until I said: “It has aspirin in it.” No, she said, it doesn’t. She got a sample from the cupboard to prove that it did not. The main ingredient was aspirin.

    My uncle practiced internal medicine in a small town. He made house calls to his elderly patients who could no longer drive. He did not see patients by appointment on Tuesdays, instead, he went to his office and read current materials or he did research needed for the treatment of a patient. The town hospital was purchased by an HMO/provider that also purchased every other provider in town. If a doctor wanted to use the hospital, he had to work for a practice owned by the hospital. My Uncle had to sell his practice. He became an employee. He was required to see patients as scheduled, on the days he was required to work. He no longer had the time to remain current or to research a particular problem. He retired early because his ethics would not allow him to practice medicine that way. His patients no longer had access to a Dr who made time for them when they needed extra.

    He was not the only Dr. that didn’t like it, but he was the only one who refused to go along with it. Complacency is OK if everybody else is doing it.

  • jay
    6 years ago

    Being on two AEDs, I know both the person who rxed them in the first place, and the one who takes care of me now know/knew about the common things re: the class. However, I was on an AED when it first came out… no patient leaflet… eekers. wound out to be my wonder drug…

    Ellen- that’s sad about the doctor having to give up the practice. VERY Sad.

  • Ellen Schnakenberg author
    6 years ago

    I see exactly what you mean caradrouin – A specialist I know personally is leaving a practice they built from scratch because the patients aren’t getting what they need. This doctor refuses to put the patients on the back burner in the interest of business.

    The question becomes, how many doctors would actually go out on a limb and do this, and how many choose to remain with the status quo?

    In this article, it is doctors who treat epilepsy patients who were most familiar with these problems with AED’s. What does that say about those patients being treated for Migraine and other conditions off-label?


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