Epilepsy Talk

How are your meds affecting you? | April 29, 2021

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.)

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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  1. Wow….. talk about sounding familiar! Never noticed a lot of it until recently when my Doc upped my dosage….. and now it seems like Im dealing with all of ’em! At least these are commonalities and not just me….. thanks as always Phyllis 😀

    Liked by 1 person

    Comment by Aaron Holmes — April 29, 2021 @ 3:15 PM

  2. I don’t know if it’s good news or bad news that many of the side-effects are common! 😒


    Comment by Phylis Feiner Johnson — April 29, 2021 @ 3:18 PM

  3. Have you any information on Aptiom? It’s a new one I think.

    Liked by 1 person

    Comment by Tami — April 29, 2021 @ 3:23 PM

  4. Aptiom (eslicarbazepine) is an anticonvulsant. It works by decreasing nerve impulses that cause seizures and pain. Aptiom is used alone or with other medications to treat partial-onset seizures in adults and children.

    Other related drugs: Fycompa, Briviact, gabapentin, clonazepam, lamotrigine, diazepam, topiramate, Lyrica.

    Most of the side-effects involve balance impairment and psychomotor impairment.

    For full details, Tami click on: https://www.drugs.com/sfx/aptiom-side-effects.html

    (Drugs.com is my go-to resource.)


    Comment by Phylis Feiner Johnson — April 29, 2021 @ 3:34 PM

  5. When you see where MAGNESIUM STEARATE is in all OTC drugs, plus in every AED/ASD we take, it is not shocking to me once I learned how MAGNESIUM helps the brain BUT MAGNESIUM STEARATE has bad effects on the 2nd gut, where all nerve endings that connect to the brain are not helpful where MSG’s & other toxins never leave the bowel fast, but very slowly, so slow that people never use the bathroom every day as it should be used, plus seizure thresholds become weaker, resulting with MORE seizure activity & seizures. That is why I use a good magnesium supplement with NO stearates (it’s getting harder to find ) , and at times drink Georges Aloe Vera Juice, or APPLE CIDER VINEGAR / ACV in water 1 or 2 times a week, depending on the health of my digestive track. The head neurologist at the NIH told me in 2000, that the nerve endings from the gut that goes to the brain does have an effect on all seizure types, & yet nothing where FOOD TOXINS that may get trapped in the digestive track for days or weeks, stay there & may cause more seizures to happen, until it al gets eliminated & suddenly seizures can stop. He really didn’t tell me anything I figured out on my own, as I saw a difference BIG TIME with a reduction if AURAS when a clean bowel became reality for me back some 30 years ago. DRUGS will work better to when all is clear from point A to point B in the digestive system. http://www.herbdoc.com Dr. Schultz knows about this.

    Liked by 1 person

    Comment by James D — April 29, 2021 @ 4:03 PM

  6. Ativan and the generic lorazepam: highly addictive, plus bone loss.

    Liked by 1 person

    Comment by HoDo — April 29, 2021 @ 4:06 PM

  7. Well, that’s a lose-lose.


    Comment by Phylis Feiner Johnson — April 29, 2021 @ 4:13 PM

  8. Lamictal and Acetazolamide have caused me kidney issues. My former kidney doctor said that I don’t have kidney disease.

    Liked by 1 person

    Comment by jerracy — April 29, 2021 @ 4:31 PM

  9. My family doctor said that I have kidney disease due to Lamictal and Acetazolamide. My former kidney doctor said that I have no form of kidney disease.

    Liked by 1 person

    Comment by jerracy — April 29, 2021 @ 4:33 PM

    • Well Jerracy that seems to be a conflict. Although I know I used to get massive kidney infections often and I don’t have kidney disease, either.

      Ask your doctor to prescribe TheraCran for you. It’s a prescription cranberry supplement that really helped me a lot.

      I went from 6 hospital stays in 4 months, to YEARS without any kidney infections. The doc who prescribed it is the Head of Urology at a very highly regarded hospital here. So, he’s no “quack”.


      Comment by Phylis Feiner Johnson — April 29, 2021 @ 4:53 PM

      • Phyllis, I don’t see the kidney specialist anymore. Would my family doctor be able to prescribe it?

        Liked by 1 person

        Comment by jerracy — April 29, 2021 @ 5:57 PM

      • I learned when my internist was being less than helpful that a specialist I was seeing could (and did) prescribe a medication I needed. Any doctor can prescribe any drug, generally speaking, but it isn’t always ethical for them to do so. For instance, an ENT doctor would refuse to prescribe birth control pills.

        Liked by 1 person

        Comment by HoDo — April 29, 2021 @ 6:07 PM

  10. Jerracy, I just found it online!!!! (It’s not cheap.) It’s $70 if you get it by prescription from your doc and $83 if you get it on your own.

    TheraCran One Cranberry Supplement https://theralogix.com/products/theracran-one-cranberry-capsules?gclid=Cj0KCQjwsqmEBhDiARIsANV8H3YXpi-dvPxcTv5HcBxF1pB8zj5gOZsZtrHs9xQ-S8YKSYUI5Zwh9wsaAuVZEALw_wcB

    Theralogix Nutritional Science
    Theralogix LLC Rockville, Maryland 20850


    Comment by Phylis Feiner Johnson — April 29, 2021 @ 6:12 PM

  11. Check, check and check! I took Dilantin, Keppra and Trileptal and my problems were swullen gums, “the rage” and double-vision. One more thing though – when I was down to just Dilantin, I was told my Vitamin D level was dangerously low and my epi felt Dilantin caused it.

    Liked by 1 person

    Comment by Ed Lugge — April 29, 2021 @ 10:03 PM

  12. A great email Phyllis, many thanks, and very informative comments following, for me getting off the drugs and free of seizures is an ongoing challenge, I am taking Keppra mainly due to what’s available thru the public system here in NZ, the local GP’s and who ever is on duty at the hospital when I arrive in the middle of the night via ambulance only know one answer, if current quantities did not work, then more may help, on the positive side, 9 seizures ( always at night ) during the last twelve months is better than others out there, fortunately we are very proactive about avoiding toxins in our diet to start with and a constant focus on cleansing from A to B, we grow a lote, shop less at the supper market, and take a range of supplements, mag’ is a big subject, some are great laxatives and not much more, Theonate is on the current positive list, Alovera we grow so get plenty of that into our gut via home made smoothies, apple cider vinegar yes, I have never smoked BUT drank TOO much wine for a period, now
    it’s zero, a challenge but got there, plenty of organic fruit

    Liked by 1 person

    Comment by Donald Nairn — April 29, 2021 @ 10:44 PM

    • Donald thanks for the heads up about Theonate and Alovera.

      You’re obviously extremely pro-active about your health and diet and it does pay off.

      As far as Keppra goes, it really gets me crazy. The automatic solution. You come in with seizures and it’s automatically, “Pull out the Keppra.” As if it was the magic bullet. Far from it.


      Comment by Phylis Feiner Johnson — April 30, 2021 @ 8:55 AM

  13. around so that’s a big help with bath room frequency. I could go on some more but will go do some gardening for a while, very relaxing and a way to reduce my EMF levels via earthing.


    Liked by 1 person

    Comment by Donald Nairn — April 29, 2021 @ 10:50 PM

  14. Yes, my son had many of these reactions also. Keppra : Rage and suicidal, topomax- hallucinations and paranoia, Dekote: skyrocketing thyroid and obesity.Onfi: memory loss, behaviotal immaturity, loss of aura ( therefore just drropping w/o warning). Now he’ s on his his lamictal and CBD and he’s not too bad. I’d like to see him off lamictal also b/c i don’t think that makes or brakes it. He has seizures when his sleep is interrupted or he’s overly emtional or stressed, The cbd helps this , i dont think lamictal does. His mood is not great even though lamictal should help this, it may cntraindicate the cbd.

    Liked by 1 person

    Comment by Mara Lynn — May 1, 2021 @ 4:21 PM

  15. Mara Lynn, I’m one of the lucky ones for whom Lamictal has been a god-send. At first, it made me crazy/hyper. (No sleep for the weary.) But when I settled down and changed my dose from bedtime to 6PM, all was good. 99% seizure-free for 10+ years!

    On the other hand, I’ve heard from many people of medical marijuana being a tremendous help in its calming effect. It’s just a matter of balancing the CBD and THC, which is often a challenge.


    Comment by Phylis Feiner Johnson — May 1, 2021 @ 4:44 PM

  16. Lamotrigine has made me dumb as ****. The other day I called a crumb a “tiny food thingy.” Says it all.

    Liked by 1 person

    Comment by Hetty Eliot — May 2, 2021 @ 8:46 PM

  17. Hetty, just living proof that what’s good for one, isn’t good for all!!!


    Comment by Phylis Feiner Johnson — May 2, 2021 @ 8:55 PM

  18. Silly question. I posted a message about my Aptiom but I do not see my message. How do I see what I posted to you and read your response? I ser a number of responses from you to others but not mine. Thank you Jude Elford

    Liked by 2 people

    Comment by ilovejudysreef — May 9, 2021 @ 8:48 AM

  19. Jude, I’m sorry. Sometimes it’s confusing and you have to scroll all the way up.

    But I don’t know why your specific question didn’t come up to be addressed.

    Sometimes my notifications get messed up (if you’re not a subscriber), but that’s no excuse.


    Comment by Phylis Feiner Johnson — May 9, 2021 @ 10:02 AM

  20. So I subscribed now. Sorry didn’t know about that. Thank you.

    Liked by 1 person

    Comment by ilovejudysreef — May 11, 2021 @ 1:09 PM

  21. Been on Tegretol since 1989… I have sl bone loss, low blood Na.. but I love my tegretol so…

    Liked by 1 person

    Comment by Patricia McGann — May 17, 2021 @ 7:07 PM

    • Well, I understand. “If it ain’t broke, don’t fix it.” Even though there are sacrifices you’re forced to make.


      Comment by Phylis Feiner Johnson — May 17, 2021 @ 9:13 PM

  22. OK NOT SURE HOW TO RE-START ALL NEW THOUGHTS. But I continued seizures forever. Petite Mal. Very few Grand Mal. I had 1 main surgery at UCLA in 2018, removal of the left partial side of brain. Kept fighting to say it cured me, but no, it did not. I had to go back to various epilepsy meds. Still seizures continued and meds never work continually, had to change often. So finally, I moved from Long Beach, CA to Upper Michigan. Next Neurologist appointment made in Marquette, MI. Various tests, etc. Then the next main setup for me, Vagus Nerve Stimulator. The pulse generator was implanted into my chest, then the electrodes were hooked up at the neck to the Vagus nerve. This sends electrodes to there every 5 minutes, which lasts 30 seconds. 24 hours a day. This is the first time started on July 22, 2022. Returning back to home, in Copper Harbor, MI, I felt it up and down. I was clocking it to learn all the processes. It was 5 minutes not feeling them and then boom the next 30 seconds I felt it activating. Didn’t take long then I was basically not noticing much, (as they indicated) I will get used to it, and your mind keeps moving on pretty normal. I do notice at times I don’t feel much, but then other times I feel it stronger and at my neck, and my voice actually gets deeper. I feel it must active it stronger. I did have a seizure yesterday (4th day after turn on). It felt different and weird, but OK I am still very excited to proceed. In 3 weeks, it’s back to Marquette to see the Neurologist. He will then adjust the speed again. Then 3 weeks later he will again adjust the speed.
    Sooo fingers crossed, per the Neurologist, it will balance my seizures. It should discontinue me having to do my nasal spray to stop it. Also, according to my doctor, I will also be able to reduce my Aptiom 1200 mg to hopefully 800 mg. A main factor for me is that I will get back more of my memory.
    My memory loss is my biggest issue, along with of course seizures, but because of the 1st brain removal, I lost a portion of my memory along with the Aptiom being added more to highest dosage, that took away most of my memory. Birds, people, trees, towns, signs, etc., could not/do not remember names, nor a number of what I did yesterday.
    So again, I am crossing my fingers that all will improve in time. I will get back most of my memory and feel seizure free because my new VNS (Vagus Nerve Stimulator)
    I will inform you all in time. Jude

    Liked by 1 person

    Comment by ilovejudysreef — July 28, 2022 @ 12:11 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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