Epilepsy Talk

Anti-Epilepsy Drugs and Their Side-Effects… | October 24, 2017

For people with epilepsy, Anti-Epilepsy Drugs (AEDs) are the most common method used to control seizures. Although there are more than 40 different types of epilepsy, the right medication or combination of medications can usually control seizures.  However 30% of people are drug resistant, owing to either their gene factors or biological makeup.

The most important consideration in your treatment is identifying the exact type of epilepsy you have, therefore you may want to consult more than one doctor.

Medications prescribed will also depend on factors such as which side-effects you can actually tolerate, other illnesses you may have, and how the drug should be taken.

It may take several months before the best drug and dosage are determined for you. After all, medicine is more of an art than a science.  And finding the right combination can literally be a crap shoot.  I know for me and many others, it took many months to get it “right.”

However, during this adjustment period, you must be carefully monitored with frequent blood tests to measure your response to the medication.

It’s also essential that you note any side-effects you experience, (keeping a daily diary is good for this) whether it’s related to health, behavior, or moods.  And please be sure to share these with your doctor, so he can get an accurate picture of what you’re going through.

One more mantra: KEEP YOUR DOCTORS’ APPOINTMENTS!  Whether it’s a diagnostic test, follow-up or regular progress report.  These appointments are necessary to see if the drug is working for you…how your body is tolerating it…and if you are at risk for serious side effects or complications.

Here’s a list of some of the most common drugs currently used to treat epilepsy:

Acetazolamide: Acetazolamide is effective for focal, tonic clonic and absence seizures. It’s also used for menstrual-related seizures, certain episodic disorders and to enhance other AEDs. Most common possible side effects include the following: Severe reactions, such as a skin rash. Nausea, vomiting, diarrhea, taste disturbance, loss of appetite, pins and needles, flushing, headache, dizziness, fatigue, irritability, excitement, unsteadiness, depression, thirst, increased urination, and reduced libido. Tolerance may develop.

Aptiom (Eslicarbazepine Acetate): Aptiom is an antiepileptic drug indicated as adjunctive treatment of partial-onset seizures. Common side-effects of Aptiom include: dizziness,  drowsiness, nausea, headache, double vision, vomiting, fatigue, vertigo, loss of coordination and balance, blurred vision, tremor, diarrhea, constipation, abdominal pain, weakness, swelling of the extremities, urinary tract infection, difficulty speaking, memory problems, involuntary eye movements, depression, insomnia, cough, rash, high blood pressure,  and the increased risk of suicidal thoughts or behavior.

Ativan (lorazepam): Ativan is similar to Clonazepam in dosage and action, but it is not as long-acting. It is usually used as a ‘rescue medication’ for patients who frequently have clusters of seizures. It works reasonably quickly when taken orally and the anti-seizure effect lasts for 2-6 hours. An Ativan concentrate, 2 mg per ml, can be taken as 1 ml liquid under the tongue in urgent situations.

Banzel (Rufinamide Inovelon in Europe): Banzel is approved as an add-on treatment for children age 4 and older and adults with the Lennox Gastaut Syndrome . This syndrome can include seizure types such as atonic (drop) seizures, tonic (stiffening) seizures, myoclonic (brief jerking) seizures, or staring (absence) seizures, as well as partial seizures. Common side-effects include headache, dizziness, fatigue and sleepiness, double vision and trembling. People who have a heart rhythm irregularity, should not take Banzel.

Briviact (Brivaracetam): Briviact has been approved for the adjunctive treatment of partial-onset seizures in patients 16 years and older. Briviact is the first antiepileptic drug  for partial seizures, approved by the FDA since the 2013 approval of eslicarbazepine (Aptiom).  Common side-effects of Briviact include drowsiness, sedation, dizziness, fatigue, nausea, vomiting, loss of balance or  coordination, irritability, and constipation. May increase the risk of suicidal thoughts or behavior.

Depakote (Depakene, Valproate, Valproic Acid): Depakote is considered one of the most effective medications for treating generalized seizure types such as partial, absence, and generalized tonic-clonic seizures. Some of the common side-effects include dizziness, nausea, vomiting, tremor, hair loss, weight gain, depression in adults, irritability in children, reduced attention, and a decrease in thinking speed. Over the long term, the drug can cause bone thinning, swelling of the ankles, irregular menstrual periods. More rare and dangerous effects include hearing loss, liver damage, decreased platelets (clotting cells), and pancreas problems.

Dilantin (Phenytoin): Dilantin is used to control partial seizures and generalized tonic-clonic seizures. It also can be given intravenously in the hospital to rapidly control active seizures.  Interestingly, Dilantin is the most prescribed AED by general physicians in the U.S. but less so among epilepsy doctors, because of its side-effects. Common side-effects are unsteadiness and moderate cognitive problems, dizziness, fatigue and slurred speech. There are also long-term potential cosmetic (body/face hair growth, skin problems), and bone problems (osteoporosis). Phenytoin can also cause a rare and dangerous rash called Stevens-Johnson syndrome.

Epilim (Sodium Valproate): Effective for all types of seizures. Most common possible side-effects include the following: severe reactions, such as a skin rash, which should be immediately reported to your doctor. Hair loss – not usually severe and is usually reversible if the dose is reduced. Nausea, stomach upset, diarrhea, and weight gain (due to increased appetite), increased levels of ammonia in the blood, and reduced platelets in the blood. Has been associated with polycystic ovaries and menstrual problems. Sodium valproate carries a higher risk than other AEDs of causing developmental problems in unborn babies if taken during pregnancy. Having preconceptual counselling is recommended.

Felbatol: Felbatol treats partial and some generalized seizures. Side-effects include decreased appetite, weight loss, inability to sleep, headache, and depression. In rare cases, the drug can cause bone marrow loss or liver failure. Therefore, use of the drug is limited.  And if you are taking it, you must have blood cell counts and liver tests regularly.

Fycompa (Perampanel): is an anticonvulsant used to treat seizures in adults and children who are at least 12 years old. This AED is used to treat partial-onset seizures with or without secondarily generalized seizures, and for use with other medications to treat primary generalized tonic-clonic (PGTC) seizures. Side-effects include: abnormal gait, aggressive behavior, dizziness, drowsiness, equilibrium disturbance, falling, hostility, ataxia, fatigue, and irritability. Other side-effects include: anxiety, back pain, blurred vision, vertigo, and weight gain.

Gabitril: Gabitril is used with other epilepsy drugs to treat partial and some generalized seizures. Common side-effects include dizziness, fatigue, weakness, irritability, anxiety, and confusion.

Keppra (Levetiracetam): Keppra is one of the more used medicines in seizure clinics because it’s usually effective for a broad-spectrum of seizures types.  It has a relatively low incidence of causing thinking/memory problems and has no drug interactions. The most common side-effects are dizziness, fatigue and insomnia, but the more troublesome problem can be irritability and mood changes. This may occur to some degree in up to a third of those taking the medicine.

Klonopin (Clonazepam):  Klonopin is in the  same family as Valium (Diazepam), Ativan (Lorazepam), Tranxene (Clorazepate), Xanax (Alprazolam). They are often used in the emergency room to stop a seizure and are effective in short-term treatment of all seizures. Tolerance usually develops within a few weeks, so the same dose has less influence over time. Klonopin appears to be more long-acting against seizures than Valium or Ativan. Side-effects of Klonopin include tiredness, unsteady walking, nausea, mood changes, loss of appetite and addiction.

Lamictal (lamotrigine): Lamictal treats partial and some generalized seizures, but it may not be as effective for myoclonic seizures.   Its side-effects include dizziness, fatigue, insomnia and mild cognitive (thinking) impairment. In rare cases, it can cause Stevens-Johnson syndrome which poses a dangerous risk if not treated immediately. Doses should be increased slowly to avoid any complications.  Lamictal is also used for mood stabilization.

Lyrica (Pregabalin): Lyrica is used to treat partial seizures and chronic pain of certain types.  A relative of gabapentin, it may work better, and can be given twice a day. Some believe that it is more effective against seizures than gabapentin.  The good news is that it has no drug interactions  Side-effects include dizziness, sleepiness, dry mouth, peripheral edema, blurred vision, weight gain, and difficulty with concentration and attention.

Neurontin (Gabapentin):  Neurontin is used with other epilepsy drugs to treat partial and some generalized seizures. It has the reputation of being a safe but not particularly powerful AED. The effectiveness criticism probably is because it’s often prescribed at too low a dose.  Side-effects include unsteadiness, weight gain, fatigue and dizziness, but are rarely lasting.  Neurontin is also often used for chronic pains of certain types.

Onfi (Clobazam): This medication is used with other medications to help control seizures. It belongs to a class of medications called benzodiazepines, which act on the brain and central nervous system to produce a calming effect. This drug works by enhancing the effects of a certain natural chemical in the body (GABA). Drowsiness, dizziness, tiredness, headache, constipation, weight gain, fever, cough, drooling, trouble sleeping, or nausea may occur. If any of these effects persist or worsen, tell your doctor promptly.

Phenobarbital (Luminal): This old-timer is very inexpensive and effective in a single daily dose.  Unfortunately, side-effects include sedation, thinking/memory problems and depression. Phenobarbital can also cause long-term bone problems. It’s mildly addictive and requires slow withdrawal. And it is not suitable for pregnant mothers because there is a significant rate of birth defects.

Sabril (Vigabatrin): Sabril has been used for over a decade in many countries, and it is effective for partial seizures.  It also may be very effective for infantile spasms, a serious type of seizures in young children. Release in the U.S. was delayed because the drug is toxic to the retina of the eye in up to 30% of people who take it long-term. This toxicity can result in permanent loss of peripheral vision. Regular vision testing is recommended for all people on this drug.

Tegretol (Carbamazepine or Carbatrol):  Tegretol is the first choice for partial, generalized tonic-clonic and mixed seizures. Long-acting forms can be given once a day.  Potential side-effects include nausea, dizziness, fatigue, weight gain, blurred vision, low blood counts and low blood sodium.  In a few percent of people, Tegretol can cause a rash, sometimes even the dangerous Stevens-Johnson syndrome. People of Asian descent with HLA-B*1502 antigen are more at risk.

Topamax (Topiramate): Topamax can be used as a general AED to suppress seizures or in combination with other drugs to treat partial or generalized tonic-clonic seizures.  Side-effects include sleepiness, dizziness, speech problems, nervousness, memory problems, visions problems and weight loss.

Trileptal (Oxcarbazepine): Trileptal is slightly different from Tegretol, however it is at least as effective in treating partial seizures and may have fewer side-effects, except for more risk of low blood sodium, fatigue, dizziness, headache and blurred vision.

Vimpat (lacosamide): Vimpat is a new entry into the AED arena, first introduced in 2009. It’s effective for partial and secondarily generalized seizures. Side-effects include dizziness, headache, nausea or vomiting, double vision, fatigue, memory or mood problems.  In rare cases, Vimpat may affect internal organs, blood counts or heart rhythm, but these potentially serious side-effects are infrequent.

Zarontin (ethosuximide):  Zarontin is used to treat absence seizures.  Adverse effects include nausea, vomiting, decreased appetite, and weight loss.

Zonegran (zonisamide): Zonegran is used in combination with other drugs to treat partial seizures. It’s similar in its coverage to Topamax with side-effects including drowsiness, dizziness, unsteady gait, kidney stones, abdominal discomfort, headache, and rash.

Another article of interest:

Anti-epilepsy drugs can cause inflammations http://www.medicalnewstoday.com/releases/270543.php

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Resources:

http://www.epilepsyfoundation.org/about/treatment/medications/index.cfm

http://www.webmd.com/epilepsy/medications-treat-seizures

https://www.epilepsysociety.org.uk/acetazolamide#.We959GhSztU

https://www.medscape.com/viewarticle/869575

https://www.webmd.com/drugs/2/drug-158687/onfi-oral/details#side-effects

 


12 Comments »

  1. Any experience with Clobaxam (Onfi) Phylis? Thanks for any feedback and the tremendous resource you provide.

    Like

    Comment by Paul Harris — October 24, 2017 @ 3:53 PM

  2. There is no mention of suicidal ideation in the list of side effects for any of the above anti-convulsants.
    Warnings are now included in the leaflets that accompany many of the above meds.
    I was one of those people that experienced the above while taking Keppra and Tegretol Retard.
    Once I was changed to sodium valporate I had no side affects whatsoever.
    Extensive research has been carried in the US,UK and Europe to prove this.

    Like

    Comment by Berenice John — October 24, 2017 @ 4:19 PM

    • Unfortunately most AEDs carry a suicide or suicide ideation warning, these days. Keppra is the most notable of these.

      Keppra — What People Are Saying

      https://epilepsytalk.com/2010/10/15/keppra-what-people-are-saying-2/

      Like

      Comment by Phylis Feiner Johnson — October 24, 2017 @ 5:28 PM

    • I for one am pleased that the word is getting out,I was diagnosed as mentally ill , four times put in psychiatric hospitals,they were still giving me the drugs because a neurologist had prescribed them,while I was in these units.

      My relationship with my daughter is ruined.
      Because of these drugs.

      Not one Doctor,nurse or any medically trained person that dealt with me made the connection with the medication,I’m still pretty angry that I had to make the connection myself,when I stopped taking them one Pyschiatrist told I was borderline personality disordered,my trust and disgust in the medical profession is zilch,I stopped taking the meds in 2005,early 2006 I was removed from the depression register,I have not looked back.

      I am fortunate that there was no lasting damage and I survived,but what a battle when you voice to people in the medical profession your fears you get labled as mentally ill,my instinct was screaming at me but they knew best.

      Like

      Comment by Berenice John — October 27, 2017 @ 1:51 PM

      • OMG. They knew “best” as they were destroying your psyche and your life?

        I’m so sorry for what you’ve been through.

        Like

        Comment by Phylis Feiner Johnson — October 27, 2017 @ 4:34 PM

      • Thank you Phyllis your site has been very valuable to me at a time I needed it.
        I have learnt so much about epilepsy through your research.

        Like

        Comment by Berenice John — October 29, 2017 @ 2:43 PM

      • I’m so glad to hear it. If there’s any way I can help, just sing out!

        Like

        Comment by Phylis Feiner Johnson — October 29, 2017 @ 2:48 PM

  3. Hey Phylis,

    ” I know for me and many others, it took many months to get it “right.””

    Yeah right, more like many years, especially in my case.

    After my brain tumor removal and after i stopped taking the steriods, the seizures started. They were small, only in the finger tips of my right hand. No big deal, but when they started to slowly increase in frequency and magnatude, the doctors only solution was to increase my Keppra dosage. Well during the 2 or so years i was on Keppra, my seizures really increase, from not just the finger tips, but the whole arm. I personally think Keppra made it worse. My opinion. It was an ok drug, didn’t have to many side effects, but I just didn’t like it. Oh ya, the reason i came off of it was because one time after a seizure, my arm would not come back to normal. After a seizure, my arm feels like a wet noodle, but after the seizure within a few minutes it comes back to life. Well it didn’t come back to life, so i went to the Emergency room, and I told them i think it’s the meds that is doing it. So they gave me Dilantin.

    Oh my, Dilantin made my gums feel weird but worst of all, my seizures intensified. I started seeing things float in my vision, that hadn’t happened since before they found the baseball size tumor. I had to get off of Dilantin, so the next meds up to try was Lamotrigine.

    Oh my, what a faboulous medicine at first, but after 4 months, it turned ugly. My seizures were such that I thought i was going to literally die from them. They beat me up, tied me up in a pretzel and even tried to break my neck. I immediatley went of that medincine after the second violent seizure i had. Next up was Gabapentin.

    I really like this medicine and not only has it reduced the amount of my seizures, but also i am able to control the time my seizures happen, since they only work for like 6 hours, so the timing i take it forces my seizures to come in the mornings. Not sure the exact count any more, but in the last 4 or 5 yrs that i’ve been on it, i’ve only had 3 seizures that were outside of the normal morning time i have them. And i have seizures now like every 2 months. Maybe it works, because it’s not one of the all powerful AEDs, maybe i don’t need that strong type of medicine, since Gabapentin is the only seizure medicine i’m on. Also Gabapentin is prescribe for anxiety issues as well.

    Ativan is my emergency med i take when i feel a seizure come on. I would hate to take this medicine on a daily basis. it’s nasty tasting and leaves side effects for a couple of days.

    This is my AED history.

    Zolt

    Like

    Comment by Zolt — October 24, 2017 @ 6:19 PM

    • What a story Zolt! Intriguing and horrifying. I guess you’re the “poster” figure for all AEDs gone wrong.

      I know from your past posts that you have your seizures “time controlled”. Isn’t there an extended release of Gabapentin that you can take?

      Or is it just the way your body metabolizes it?

      Like

      Comment by Phylis Feiner Johnson — October 24, 2017 @ 6:31 PM

  4. Well to me i think i’m going to have the seizures whether or not i take the time release version or not. And that being the case, why would i take the extended release tablets and have my seizures during anytime of the day. Gabapentin is the only drug that I’m able to control the time it happens. The half life is 6hrs, so if the last pill i take is at 7pm, by morning, most of the med is non effective. So rather than immediately taking my meds when i wake, i give myself an hour for the seizure to take place in the morning, then after an hour i take the meds.

    If it’s an electrical build up in the brain, it will take the easiest path to release the build up, and that is during the mornings, before i’ve taken my meds.

    All the other meds i was on, my seizures would happen anytime during the day and more often than not, it would happen during the worst possible times during the day. And i have many stories about that, like having a seizure when meeting the new boss, or a grand mall going home at 5pm during rush hr traffic, and etc… So having this small but effective control is a God send.

    Like

    Comment by Zolt — October 25, 2017 @ 10:40 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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