Epilepsy Talk

How are your meds affecting you?  | March 10, 2023

They’re necessary, but not necessarily nice. And every med has its own side-effects. Just as different people experience different difficulties.

Here‘s the low-down on the possible side-effects of your drugs and the secrets they may hold.

Some might sound painfully familiar…

Ativan (lorazepam) — behavior changes, drowsiness, sleepiness, fatigue, poor coordination, unsteadiness.

Banzel (rufinamide) — loss of appetite, vomiting, dizziness, headache, fatigue, irritability, attention difficulty, double vision, itchiness, stomach pain. People who have a heart rhythm irregularity, should not take Banzel.

Briviact — a cousin of Keppra, Briviact can cause depression, or other mood problems, suicidal thoughts or actions, liver disease, alcoholism or drug addiction.

Carbatrol (extended release carbamazepine) — dizziness, nausea, drowsiness, blurred or double vision, skin rashes, abnormal blood counts (rare).

Depakote (depakene, valproate, valproic acid) — 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.

Diamox (acetazolamide) — appetite loss, frequent urination, drowsiness, confusion, extremity numbness, kidney stones.

Diastat Acudial (diazepam rectal gel) — drowsiness, sleepiness, fatigue, dizziness, headache, pain, diarrhea, rash, nervousness, slowed speech, poor coordination, unsteadiness, behavior changes.

Dilantin (phenytoin) -– moderate cognitive problems, slurred speech, confusion, hallucinations, mood or behavior changes, hyperactivity (mentally or physically), unsteadiness, dizziness, fatigue, gum overgrowth, potential body/face hair growth, skin problems, bone problems (osteoporosis), suicide thoughts or attempts. Plus, Dilantin can cause a rare and dangerous rash called Stevens-Johnson Syndrome.

Felbatol (felbamate) — anorexia, vomiting, insomnia, nausea, headache, dizziness, vision problems, poor coordination, tremor, mood changes, anxiety, depression, liver and blood toxicity. (If you are taking it, have blood cell counts and liver tests regularly.)

Onfi (clobazam) – weakness, drowsiness, dizziness, poor coordination, drooling, restlessness, aggressiveness, anxiety, increased heart rate, tremor, addiction.

Gabitril (tiagabine) – nausea, dizziness, vomiting, diarrhea, tremor, nervousness, difficulty concentrating, irritability, anxiety, and confusion.

Hp Acthar Gel (acth: adrenocorticotropic hormone) — insomnia, increased appetite, weight gain, irritability, fluid retention, sleepiness, fatigue, poor coordination, loss of strength, dizziness.

Keppra (levetiracetam) — “Keppra Rage”, dizziness, drowsiness, irritability, sore throat, tiredness, weakness. Abnormal thoughts, decreased coordination, extreme dizziness, drowsiness, fatigue or weakness, hallucinations, memory loss, muscle or neck pain, new or worsening mental, mood, or behavior changes (eg: aggression, agitation, anger, anxiety, apathy, depression, hostility, irritability, panic attacks, restlessness), new or worsening seizures, suicidal thoughts or attempts.

Klonopin (clonazepam), Valium (Diazepam), Xanax (alprazolam) — drowsiness, loss of appetite, poor coordination, unsteadiness, mood and behavior changes, addiction.

Lamictal (lamotrigine) — dizziness, nausea, fatigue, headache, blurred vision, clumsiness. Also, in rare cases, Lamictal can cause Stevens-Johnson Syndrome which poses a dangerous risk if not treated immediately.

Lyrica (pregabalin) — weight gain, swelling of hands and feet, nausea, sleepiness, blurred or double vision, dry mouth, difficulty concentrating, confusion, dizziness, weakness, tremor.

Mysoline (primidone) — clumsiness, unsteadiness, vertigo, dizziness, appetite loss, nausea, vomiting, fatigue, insomnia, irregular eye movements, blurred or double vision, hyper-irritability, depression, hyper-activity (children).

Neurontin (gabapentin) — weight gain, ankle swelling, fatigue, dizziness, clumsiness, twitching.

Onfi (clobazam) — New discovery: The FDA is warning the public that Onfi can result in Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) at any time during Onfi treatment. However, the likelihood of skin reactions is greater during the first 8 weeks of treatment or when Onfi is stopped and then re-started.

All cases of SJS and TEN in the FDA case series have resulted in hospitalization, one case resulted in blindness, and one case resulted in death. Other side-effects include mood or behavior changes, anxiety, panic attacks, trouble sleeping, muscle spasms, irritably, agitation, aggressiveness, restlessness, hyperactivity, depression.

Peganone (ethotoin tablets) — do not use this medication if you have liver disease or a blood cell disorder. Call your doctor at once if you have any unusual bleeding, weakness, or any signs of infection, even if these symptoms first occur after you have been using the medication for several months.

Perampanel (fycompa) — irritability, anxiety, aggression, weight increase, fatigue, weakness, dizziness, balance disorder, loss of muscle coordination, blurred vision, upper respiratory tract infection.

Phenobarbital (luminal) — drowsiness, dizziness, upset stomach, anemia, rash, fever, vitamin folic acid deficiency, low calcium levels, bone loss, irritability, depression, hyperactivity (children), difficulty concentrating, memory problems, slurred speech, decreased sexual interest, mildly addictive.

Phenytek (extended phenytoin sodium) — constipation, dizziness, headache, nausea, trouble sleeping, vomiting, high blood sugar, decreased coordination, confusion, jerking movements of the eyes, shaking hands, slowed thinking, movement, memory problems, slurred speech, poor concentration, new or worsening mental or mood changes, seizures.

Potiga (ezogabine) — contact your doctor if you experience sudden changes in mood, behaviors, thoughts, or feelings, confusion, hallucinations or psychotic symptoms. Another side-effect is urinary problems.

The FDA issued an alert this year regarding Potiga. At that time, 7% of trial group had turned blue (yes, turned blue…) and 30% of trial group had developed retinal damage.

Rufinamide (inovelon) — headache, dizziness, fatigue, nausea, sleepiness, double vision, balance problems. (Not approved for use in the United States.)

Sabril (vigabatrin) — headache dizziness, tremor, blurry vision, vision loss, abnormal MRIs, anemia, sleepiness, numbness of extremities, weight gain, swelling, fluid retention, hyperactivity, memory impairment, constipation, diarrhea, urinary tract infection, upper respiratory tract infection, poor coordination, joint pain.

Tegretol (carbamazepine, carbatrol) Tegretol XR (extended release carbamazepine) — dizziness, sleepiness, unsteadiness, blurred or double vision, headache, nausea, skin rashes, abnormal blood counts, bone and liver problems. (You must be tested for toxicity regularly.)

Topamax (topiramate) — weight loss, nausea, sleepiness, dizziness, tingling skin, clumsiness, unsteadiness, confusion, nervousness, difficulty thinking or talking, speech, memory and vision problems, feeling of pins and needles in fingertips and toes, depression, psychiatric disorders.

Tranxene (clorazepate) — sleepiness, fatigue, poor coordination, unsteadiness, behavior change.

Trileptal (oxcarbazepine) — difficulty concentrating, sleepiness, fatigue, dizziness, double vision, nausea, headache, unsteadiness, loss of coordination, rash, low blood sodium.

Viibryd (vilazodone hydrochloride) — do not use Viibryd if you have used an MAO inhibitor. Tell your doctor if you have: liver or kidney disease, a bleeding or blood clotting disorder, seizures or epilepsy, low levels of sodium in your blood (hyponatremia), bipolar disorder (manic depression) or a history of drug abuse or suicidal thoughts. (So, if it’s for depression, just what can you use it for???)

Vimpat (lacosamide) — dizziness, unsteadiness, shakiness, falling, headache, nausea, vomiting, double vision, blurred vision, drowsiness, diarrhea, unintentional rapid eye movement, tremor, memory mood problems. (In rare cases, Vimpat may affect internal organs, blood counts or heart rhythm.)

Xcopri (cenobamate) — The most common side effects of Xcopri include feeling sleepy and tired, dizziness, double vision, and headache. Serious side, effects include: skin rash, hives, fever, swelling of the face, eyes, lips, or tongue.

Zarontin (ethosuximide) — appetite loss, nausea, vomiting, diarrhea, weight loss, drowsiness, headache, dizziness, fatigue, double vision, memory, and mood problems.

Zonegran (zonisamide) — sleepiness, dizziness, loss of appetite, headache, nausea, irritability, difficulty concentrating, poor coordination, tremor, speech problems, unsteadiness, fever, itching, vision problems, kidney stones, abdominal discomfort. (Should not be used in individuals allergic to sulfa drugs).

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Resources:

https://www.webmd.com/epilepsy/medications-treat-seizures#:~:text=Common%20side%20effects%20include%20dizziness%2C%20nausea%2C%20vomiting%2C%20tremor%2C,the%20ankles%2C%20irregular%20menstrual%20periods.

https://www.epilepsy.com/tools-resources/seizure-medication-list

https://www.medicinenet.com/what_are_the_side_effects_of_antiepileptic_drugs/article.htm#what_are_the_side_effects_of_antiepileptic_drugs

https://www.epilepsy.com/treatment/medicines/side-effects#:~:text=Cognitive%20problems%20%2D%20problems%20with%20thinking,they%20think%20or%20do%20tasks.

https://pubmed.ncbi.nlm.nih.gov/17173601/

https://www.epsyhealth.com/seizure-epilepsy-blog/seizure-medication-side-effects-what-to-do-about-them

https://www.pharmaco-vigilance.eu/content/adverse-effects-antiepileptic-drugs

https://medshadow.org/anti-epileptic-drugs/

https://epilepsydisease.com/clinical/medication-long-term-risks


4 Comments »

  1. I’ve tried about ten of these meds and would add a few more side effects for three of them: Briviact (chronically tired, weight gain), Zonegran (psychological disruption), and Lamotrigine though not its “equivalent” Lamictal (intensified emotions, sleep disorder, easy bruising, constipation, discolored toenails, hair loss, brain fog).

    Liked by 1 person

    Comment by Deb — March 10, 2023 @ 1:47 PM

  2. I was on keppra for ten years and kept having partial seizures. My doctor switched me over to briviact, which is a stronger cousin of keppra. I continued to have partial seizures for four more years. I finally found a neurologist who would listen to me! He put me on phenobarbital and weaned me off the briviact. All seizure activity SEEMS to have stopped…

    Liked by 1 person

    Comment by MrLarro — March 10, 2023 @ 10:42 PM

  3. I swear lamotrigine makes me stupid (poor memory, poor vocabulary). Doctors deny it has that side effect but anecdotally I’ve read many people say it.

    Liked by 1 person

    Comment by Hetty Eliot — March 11, 2023 @ 7:19 AM


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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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