Q&A with Dr. Shahin Nouri

NEXT UP: Part II of “When Seizure Types Change”  by Ruth Shinnar, RN, MSN

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive.  Please note that these Q&A post, like our provider articles, should not be taken as medical advice.  Each patient is unique.  For medical advice regarding your specific condition, please consult your doctor.

Q&A with Dr. Shahin Nouri:

 1. My son had absence seizures for the better part of five years. Our doctor recently diagnosed him as seizure-free at the age of 13.  He is eager to go off of his medication, but we’re afraid it will lead to a return of his seizures. How is it determined that one is “seizure-free.”  Is this the same as being “epilepsy-free?”

Absolutely! Absence epilepsy is a condition of childhood and adolescence. The Majority of people with absence so to say “grow out it”.  Only rarely will absence seizures accompany a person into adulthood. So , depending on your child’s age, he can become seizure-free.

However, it is possible that someone has epilepsy, and a longer EEG shows abnormal electrical activity. In the case of absence seizures, these electrical events need to be up to 10 seconds long before a clinical manifestation, in other words a seizure comes to light. Therefore, as long as your child hasn’t had any clinical seizures, and a longer EEG is unremarkable, it is safe to assume he has grown out it, and therefore is epilepsy-free.

As a general rule, after two years of seizure freedom and a normal EEG and imaging (MRI)  it is possible in most patients to attempt weaning off anti-seizure medications.

2. To the best of my knowledge, my husband has been without seizures for a little over two years. He used to have convulsions.  One of his co-workers recently told me that he’s been “spacing out” a lot at work.  Could this be what you refer to as an absence seizure?

Episodes of staring in adults are most probably Complex Partial Seizures and not absence seizures. Absence is an uncommon variety of Primary Generalized Epilepsy and only very rarely accompanies a person into adulthood. More frequently, people have Localization Related Epilepsy that can cause partial seizures. When partial seizures cause change in alertness, they are called Complex Partial Seizures.

The goal of epilepsy treatment should be seizure-freedom. Therefore it is very important for him to discuss a plan with his epilepsy neurologist (epileptologist) to characterize these events and properly treat them. VideoEEG in an epilepsy center can be used to characterize these events.

If seizures are ruled out, other causes of “spacing out” like sleep disorders, concentration problems and so on should be considered.

3. My health coverage only covers the generic version of my drug. Although I have less seizures than I did without medication, I wonder if I could experience even better results with the brand drug. Should I talk to my doctor about this? Is there a way to get brand drugs covered under special circumstances?

 Yes and Yes! The main disadvantage of generic versions of anti-seizure medications is that less drug possibly reaches the brain. Although they are all supposed to contain the same amount of active ingredient, the level of active medication in blood might be 10-20% less that with brand versions.

Various factors contribute to this substandard quality. These medications are manufactured in various countries. Lack of oversight and standardized procedures and varying environmental conditions are among the few to name.

Insurances might require pre-authorization. Your physician’s office needs to contact your drug plan and explain the need for brand medications. They might require a letter or a form from your physician. One of the following scenarios can occur: in best case scenario, your health insurance provider grants a pre-authorization and your co-pay is reasonable. In some cases the insurance might approve the usage of brand medications; however your co-pay might be unreasonably high. In worst case scenarios the insurances might not have those particular medications as formulary, and not approve the coverage at all.

Be sure to check with the manufacturing company of the brand medications and see if you qualify for any aide programs, provided by some companies.

4. I’ve been told by my doctors for years that I have refractory epilepsy. I’ve tried several combinations of drugs. However, I’m afraid of the risk involved with surgery. How do you recommend patients weigh the potential costs and benefits of epilepsy surgery?

The standard of care in 2012 is that if seizures are not well controlled after the proper use of two anti-seizure medications, it is very unlikely that a third or forth medication will change the outcome. This condition is called refractory epilepsy. Such people should be evaluated to determine if they are candidates for epilepsy surgery.

As the first step your epileptologist documents that the seizures have a clear source focus in video-EEG. A series of other tests, including MRI, PET-CT and SPECT will determine any other underlying abnormality in that focus. Neuropsychological evaluation, WADA test and Functional-MRI will determine how safe it is to have that part of brain surgically removed.

A multi-disciplinary team of epilepsy neurologists, neurosurgeons and psychologists help determine the risk versus benefit of epilepsy surgery in each individual case. Only after it is decided that the surgery won’t cause any deficits, it is a viable option.

5. When I was first diagnosed with epilepsy, I had grand mal seizures. I was terrified to leave the house for fear I’d have one in the wrong place at the wrong time.  With medication, those seizures have stopped, but I seem to be having petit mal seizures now.  My family wants me to try a new medication, but I’m afraid the grand mal seizures will return. Is this a possibility? Is there any way to know without switching?

The goal of the treatment should be seizure-freedom. With the right choice of medications and proper management this could potentially be achieved with minimal side effects. Altogether, about 60 percent of people with epilepsy will have good control of their seizures after the use of one or 2 anti-seizure medications.

If you have the diagnosis Primary Generalized Epilepsy, you might experience generalized tonic clonic seizures, also known as grand mal; as well as absence, also known as petit mal.

More frequently however people have Localization-Related Epilepsy, which can cause complex partial seizures. In any case you should consider consulting your epilepsy neurologist and pick the right anti-seizure medication. In most cases your doctor might need to add the second medication to the first, instead of simply switching it.

Generally there is no way of predicting if one anti-seizure medication works better than the other. However, certain medications are more appropriate for certain types of epilepsy.

6. I am a thirty-year-old woman. My seizures seem to take place just after my menstrual cycle. My medication is helpful, but I’m not seizure free. Is it possible that my condition will improve or worsen upon menopause?

This pattern of seizures is called “Catamanial seizures”. About thirty to 50 percent of women with epilepsy experience fluctuations in their seizure frequency due to changes in female hormones in the body. There are two main female hormones: estrogen and progesterone. Estrogen facilitates seizures and progesterone protects against seizures. Whenever throughout the life the balance between these two female hormone changes in benefit of estrogen, the seizures worsen. That is the case in certain times of the menstrual cycle.

It is advisable to keep a seizure calendar and correlate the frequency of the seizures with the timing of the menstrual cycle to detect this condition.

Various things can be done:

• In some cases our doctor might recommend you to take slightly higher dose of your anti-seizure medications during those days.
• In other cases addition of certain medications, only during these days is reasonable. Acetazolimide (Diamax ) is a so called “water pill” that helps specifically in this condition. Also Benzodiazepines , e.g.: Valium and Ativan have been used for few days per month.
• If you are a candidate for contraceptive, your gynecologist might prescribe these medications to decrease the frequency of severity of hormonal fluctuations.
• Additionally, certain long –acting contraceptive (Depo variations) can lower the frequency of menstruations to one in every three or even 6 months and therefore have a decrease in seizure frequency.
• Finally natural plant –related progesterone preparations have been used in this setting.  Your neurologist might coordinate these treatments with your gynecologist.  Most probably your seizure frequency will decline after menopause.