Medicine is the most common way of treating epilepsy and is almost always the first treatment tried.
There are many different medicines that can prevent or stop seizures. These are sometimes called anti-seizure medications (ASMs), anti-epileptic drugs (AEDs) or anti-seizure drugs. They will successfully control seizures for about 7 out of 10 people with epilepsy.
Some medicines tend to work better for certain kinds of seizures than for others. If one medicine fails, another may work better. A combination of medications may be tried too. The medications don’t fix the problem that causes seizures. Instead, they work to stop seizures from occurring.
It’s important to talk with your doctor about the pros and cons of the different seizure medicines available to treat your kind of epilepsy.
Seizure Rescue Therapies
What are “as needed” or rescue medicines or treatments?
“As needed” medicines are medicines or treatments that are given only if needed for specific situations. Some people also call them “rescue treatments.”
- The ideal rescue medicine (1) is easy to use, (2) works quickly, (3) is safe with little to no side effects, and (4) works well.
- The goal is to stop seizures quickly to prevent emergency situations. Hopefully, this will prevent you from needing an emergency room. However, rescue medicines do NOT take the place of emergency medical care. If a true medical emergency happens, get emergency medical help right away.
- If medications are prescribed as rescue treatments, they do NOT take the place of daily seizure medications. Most people who have epilepsy are prescribed other medications that they take on a regular basis.
- People who have certain implanted devices for the treatment of epilepsy (such as a vagus nerve stimulator) can use a magnet to swipe over the device generator at the time of the seizure. This is also a form of rescue treatment.
What types of medicines can be used as a rescue treatment?
The most common type of rescue medicines are from a group of medicines called benzodiazepines. These medications get into the bloodstream quickly, to start working in the brain quickly.
- Benzodiazepines are available in several different forms. Depending on the specific benzodiazepine they can be
- Swallowed in pill form (oral)
- Placed under the tongue to dissolve (sublingual)
- Placed between the cheek and the gum to dissolve (buccal)
- Given via a gel through the anus (rectal)
- Sprayed up the nose (nasal)
- In a hospital setting, other forms of benzodiazepines can be given by an injection directly into the bloodstream vein or injected into a muscle.
- The names of benzodiazepines that are most commonly used as rescue medications include diazepam, lorazepam, clonazepam, and midazolam.
- The availability of these medicines in different forms and how they are used may vary from country to country.
- Also, the brand names of these medications can change depending on the form it is given.
- In the United States, the U.S. Food and Drug Administration (FDA) has approved several medications for out-of-hospital use for the treatment of acute repetitive seizures or clusters.
When should I use my rescue medicine?
Since seizure emergencies are not common, some people with epilepsy will not need to use any treatment other than their daily amount of seizure medicine. However, sometimes seizures occur in a different pattern that is more often or more severe. Several names have used to describe these patterns, such as seizure clusters and acute repetitive seizures. Stopping seizures early in these situations is the key to preventing a seizure emergency.
- There is no one-size-fits-all when it comes to rescue medicines. Since each person’s seizures are different, their seizure action plan and rescue medicine plan should be made specifically for them.
- When discussing with your health care provider, you should have a good understanding of your typical pattern of seizures and be able to recognize when seizures are not typical for you.
- As part of being prepared, ask your health care provider if “as needed” medicines are right for you and develop a clear plan with your provider about when they should be used.
General situations when rescue medicines may be recommended:
- Seizures occur that are different than your usual type or pattern.
- Seizures last longer than typical events.
- Seizure occur more frequently than usual
- Seizure clusters are different than usual – for example when more occur than normal or in a shorter period of time.
- Seizures occur at high-risk times – for example, during medicine changes or when sick.
When to Seek Specialty Care
If your seizures are difficult to control, meaning you continue to have seizures after one year or after two anti-seizure medications have been tried, we recommend seeking more specialized care. Epilepsy centers provide a team approach to caring for people with seizures and epilepsy. Testing is available to diagnose whether a person has seizures and the type of epilepsy they may have. Epilepsy experts can help explore all treatment options, including new or add-on seizure medications, surgery, devices, dietary therapy, or a clinical trial.
The Issue of Medication Switching
If you’re not having luck with one medication, you may be tempted to switch to a different medicine. Before making this choice, the EFEPA recommends that you discuss this decision with your physician to prevent any potentially life-threatening seziures. In fact, medication switching is often cited as a cause of seizures.
For years members of the epilepsy community have reported having seizures and other harmful side effects after switching from one version of an antiepileptic drug (AED) to another, whether the switch was brand-to-generic, generic-to-brand, or generic-to-generic. By law, the amount of medication delivered by one AED may differ from the amount delivered by another AED that the Food and Drug Administration (FDA) deems “equivalent,” and it may deliver the medication at a different rate. There is growing evidence that these variations, however slight, can mean the difference between controlled epilepsy and breakthrough seizures or other negative consequences.
Patients today are most often switched from brand-name drugs to generics, or from one generic drug to another, for a single, non-clinical reason: pressure to reduce costs. In most states, unless a physician explicitly writes “dispense as written” or “no substitution,” pharmacists can switch a patient to a lower-cost generic drug without the consent or knowledge of either the patient or the physician.
Generic drugs are currently estimated to save consumers at least $8 to $10 billion a year at retail pharmacies because they cost less than the brand name versions of the same product. The Epilepsy Foundation actively supports the increased use of generic medications as a way to save money in healthcare. Because medications are a major cost of epilepsy, the availability of less expensive versions of brand name medicine can be very good news for people with epilepsy.
Medication switching is a big concern because seizures are serious and can have considerable cost to one’s health, well-being, and wallet– and can even be life threatening. As is being shown in related studies, the cost savings in the less expensive medications may be lost when overall health costs and results are taken into account for those patients who experience breakthrough seizures or troublesome side effects when switched from their usual seizure medicine.
The Epilepsy Foundation Eastern PA appreciates that cost-control is a worthy goal and, in general, it supports providing patients with greater access to generic medications. The Foundation welcomes the opportunity that generic medications present to lower the overall costs of delivering effective healthcare to individuals and society.
But the we believe equally that short-sighted cost considerations should never be allowed to outweigh a patient’s health. Indeed, if a patient is switched off of a well-functioning drug to avoid costs, the direct economic consequences on society if the cheaper drug fails—such as more ambulance rides and emergency-room visits, greater numbers of in-patient doctor visits, or lost worker-productivity—will quickly eliminate any short-term savings occasioned by the switch. Meanwhile, the negative impact on patients and their families can be immeasurable.
The Foundation has written to the major insurance companies sharing the data on switching and requesting that, given the elevated risk, companies not require patients on brand AEDs to switch and to eliminate any cost differential between brand and generic AEDs for people with epilepsy.
Medication Coverage and Prescription Assistance Programs
If you’re having trouble getting your medication covered by insurance, there are other options like Patient Assistance Programs. These are offered by different groups, including government organizations and pharmaceutical companies. If you need help figuring out what program is right for you, feel free to email us or give us a call. Click here for a downloadable list of Patient Assistance Programs. Below is a brief overview of options.
- Mark Cuban CostPlus Drug Company is a pharmacy that cuts out the middlemen to offer hundreds of common generic medications at wholesale prices. View their website at https://costplusdrugs.com/
- Discount Drug Network provides easy access to the largest selection of the best discounts available in the industry. Discount Drug Network offers consumers a free, simple-to-use Prescription Discount Card that enables everyone, regardless of age, income or insurance status, to save on prescription drugs. Order your free card here: www.ddnrxsavings.com/efepa.
- PACE/PACENET—This is available to many of Pennsylvania’s senior citizens (65 years of age and older) through the Pennsylvania Department of Aging. It offers comprehensive prescription coverage to cover the cost of most prescription medications. The program requires no premiums or monthly fees. Contact PACE/PACENET at 1-800-225-7223 or www.aging.state.pa.us.
- Pharmaceutical Company Patient Assistance Programs—Many pharmaceutical companies offer Patient Assistance Programs to those who cannot afford the cost of their medications but are ineligible for Medicaid due to their income. Following is a list of each company’s contact information:
- Briviact– Patient Assistance Program 1-844-599-CARE and visit briviact.com/savings
- Carbatrol—Shire Pharmaceuticals Carbatrol Patient Assistance Program 1-908-203-0657
- Depakene—Abbott Patient Assistance 1-800-222-6885
- Depakote, Depakote ER—Abbott Patient Assistance 1-800-222-6885
- Diastat Acudial Rectal Gel—Valeant Pharmaceuticals International Patient Assistance Program 1-800-511-2120
- Dilantin—Pfizer, Inc. (Connection to Care) 1-800-707-8990
- Felbatol—Meda Pharmaceuticals Patient Assistance Program 1-800-678-4657
- Fycompa—Eisai Neurology Patient Assistance Program 1-866-694-2550
- Gabitral—CephalonCares Foundation Patient Assistance Program 1-877-237-4881
- HP Acthar Gel—Questcor Pharmaceuticals Acthar Gel Patient Assistance Program 1-888-435-2284
- Keppra– UCB Patient Assistance Program (844) 599-CARE and visit www.ucb-usa.com/Patients/Financial-Assistance
- Lamictal, Lamictal XR—GlaxoSmithKline Bridges To Access 1-866-728-4368 *Advocate must pre-enroll patient
- Lyrica—Pfizer, Inc. (Connection to Care) 1-800-707-8990
- Mysoline—Valeant Pharmaceuticals International Patient Assistance Program 1-800-511-2120
- Neurontin—Pfizer, Inc. (Connection to Care) 1-800-707-8990
- Onfi — Lundbeck’s ONFI Support Center 1-855-345-6634 and visit www.onfi.com for saving coupons
- Phenobarbital—Xubex Patient Assistance Program 1-866-699-8239
- Sabril—Lundbeck’s SHARE Call Center 1-888-45-SHARE (1-888-457-4273)
- Tegretol, Tegretol XR—Novartis Patient Assistance Program 1-800-277-2254
- Topamax—Janssen Ortho Patient Assistance Foundation 1-800-652-6227
- Tranxene—Lundbeck’s SHARE 1-888-45-SHARE (1-888-457-4273)
- Trileptal—Novartis Patient Assistance Program 1-800-277-2254
- Vagus Nerve Stimulator—Cyberonics 1-800-332-1375 ext. 7493 or BJ Wilder Therapy Program
- Vimpat—UCB Patient Assistance Program 1-866-395-8366
- XCOPRI– SK Life Science Navigator 866-756-2844 and visit www.sklsinavigator.com/
- Zarontin—Pfizer, Inc. (Connection to Care) 1-800-707-8990
- Needy Meds—This website provides information on patient assistance programs available for each medication. Go to www.needymeds.org.
- Express Scripts Specialty Distribution Services Rx Outreach Medications—This provides discounts for some generic medications. 1-800-769-3880
- Xubex Pharmaceuticals Xubex Patient Assistance Program—This provides discounts for some generic medications. 1-866-699-8239 or www.xubex.com
- RX Hope—This website provides information on patient assistance programs available for each medication. Go to https://www.rxhope.com.
- PHRMA—This website provides information on patient assistance programs available for each medication. Go to http://www.pparx.org.
- Together RX—This website provides information on patient assistance programs available for each medication. Go to http://www.together-rx.com.
- Veteran’s Affairs Veteran’s Benefits—This website provides information about benefits for veterans. Go to http://www.va.gov.
- Eli Lilly & Co—This website provides information about their patient assistance program and its eligibility requirements. Go to http://www.lilly.com.
- Pennsylvania Rx Price Finder—This website allows for the comparison of costs per medication between pharmacies. Go to http://www.parxpricefinder.com