Epilepsy Talk

How Are Your Meds Affecting You? | March 14, 2019

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 others.

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. Great article — thank you for all of your research Phylis. Very timely as well. One of the medications that I have been taking for several years is Zonisamide. While visiting family in California at the end of January this year, I wound up in the ER in terrible pain…diagnosis was a 6mm kidney stone – too big to pass, surgery required and done the next day. The urologist here at home that has been following up, has requested I find out what the lab reports at this hospital say about the make up of this stone as he wants to know how best to follow up with my care. I’ve had no luck so far getting that information so it was wonderful to read your article and to be able to forward this information to him…hopefully at least this gives the doc something to go on for now while I penetrate the layers at Scripps in So Cal (sigh).

    Liked by 1 person

    Comment by ellen — March 14, 2019 @ 5:23 PM

    • Wow. A doctor who wants to get to the bottom of things and CARES! (Rather than “I dunno.”)

      Sign me up. 🙂


      Comment by Phylis Feiner Johnson — March 14, 2019 @ 5:33 PM

  2. The biggest problem has been the long term effects of taking AEDs (30+ years). I’m now having to take more drugs for the side effects of the AEDs than actual AEDs, main problems being severe chronic insomnia, gastritis/acid reflux, crashed Vit D levels and most recently bowel problems. And it’s highly probably the lamictal is contributing to worsening vision by affecting my eye muscles, so frequent eye exams & lens changes. My kidneys function results are also chronically “not normal” but thankfully not getting worse.

    It’s the long term effects they don’t warn you about.

    Liked by 1 person

    Comment by Katie — March 14, 2019 @ 6:27 PM

    • If they do tell you, it’s in mouse type so small, even with a magnifying glass, you wouldn’t be able to see it.

      My guess is they do…somewhere.

      Part of BIG Parma’s CYA.


      Comment by Phylis Feiner Johnson — March 14, 2019 @ 7:26 PM

    • Katie, do you take a vitamin d/k2 combo? I hear that is great for the kidneys, bones and cardiovascular health. I currently do 4000 iu daily of vitamin d but was recommended to do the duo.

      Liked by 1 person

      Comment by Marlyn — March 15, 2019 @ 3:39 AM

      • Marlyn, I take vit D as a monthly megadose tablet which seems to be working fine. Never heard of the duo.

        Liked by 1 person

        Comment by Katie — March 15, 2019 @ 10:49 PM

  3. No mention of Epilem? Is it under a different name as at 29 tablet difficult to breathe as throat too swollen had to call Emergency In U.K. Tablets changed to Levetiracetam. Previously only had one sleep Epilepsy problem 3 years ago. I myself believe was from taking a tablet for something else long term which has rare risk of causing Epilepsy. I was not aware a drug could cause Epilepsy?

    Liked by 1 person

    Comment by John Thompson — March 14, 2019 @ 6:45 PM

    • Comment by Phylis Feiner Johnson — March 14, 2019 @ 7:26 PM

      • Epilim (sodium valproate) is not on the list, my fault.

        And Levetiracetam.

        I don’t know about a drug causing epilepsy, but it’s possible.

        And even more possible if it’s interacting with another med.

        Whatever it it, your reaction sounds dreadful.

        How was it rectified?


        Comment by Phylis Feiner Johnson — March 14, 2019 @ 7:33 PM

    • Read the fine print and most of them have seizures as side effects!! I know loads of people who’s seizures have changed or got worse with drug changes, or more commonly when their doses have been increased way too much, though the latter is on the neuros.

      Liked by 1 person

      Comment by Katie — March 14, 2019 @ 8:28 PM

      • Normally the type of seizures a drug may cause is that of quitting the drug straight up without tapering.

        Liked by 1 person

        Comment by Zolt — March 16, 2019 @ 11:57 AM

  4. Vimpat was the drug that stopped my complex seizures. I still have partial. However Vimpat gave me curly hair, my finger nails started to separated from my nail beds and as a menapaual woman I had nipple discharge.

    Liked by 1 person

    Comment by Marie — March 14, 2019 @ 6:59 PM

  5. Read the fine print and most of them have seizures as side effects!! I know loads of people who’s seizures have changed or got worse with drug changes, or more commonly when their doses have been increased way too much, though the latter is on the neuros.

    Liked by 1 person

    Comment by Katie — March 14, 2019 @ 8:29 PM

  6. It’s that mouse type CYA copy that will get you every time.

    Too bad they don’t tell us in print we can READ! 😦


    Comment by Phylis Feiner Johnson — March 14, 2019 @ 8:32 PM

  7. Thanks! I still believe the way you’re viewed by members of your community can exaggerate any side effects immensely, for good or bad.

    Liked by 1 person

    Comment by Susan — March 14, 2019 @ 9:01 PM

    • I couldn’t agree more.

      And often the side-effects are worse than the meds themselves.

      In one study, participants anticipated that their self-perceptions and self-esteem would be more positive if they didn’t have epilepsy.

      Self-perception turned out to be one of the most important predictors of successful social relationships in people with epilepsy — even more important than seizure frequency, severity, or other medical factors!


      Comment by Phylis Feiner Johnson — March 14, 2019 @ 9:09 PM

  8. The behavioral side effects you list for Dilantin result from toxicity which is why your neurologist needs to be vigilant about checking your blood level regularly. Thanks.

    Liked by 1 person

    Comment by Susan — March 14, 2019 @ 9:42 PM

    • Hi, I’ve research this and taking blood levels do not tell doctors that you are suffering from adverse effects. It is just the neuro has to believe you that it is the drug. Believe me that is hard for the neurologist to do. I have experience of this.


      Liked by 1 person

      Comment by squirrel37Debbie — March 15, 2019 @ 2:38 PM

      • My understanding is that measuring blood levels indicates if the med is at it’s therapeutic level in your system.

        For example, I had my blood levels checked and it was determined that my Lamictal level was 50% lower than it should be in my blood stream.

        Likewise, if the level is too high, it could mean that it is toxic and the effects of toxicity can occur.


        Comment by Phylis Feiner Johnson — March 15, 2019 @ 3:13 PM

      • Yes, blood tests won’t tell u everything, like that u are feeling bad ever since taking the new meds. Therefor u need to do what i did and DEMAND to be taken off of a drug that u think is causing the issues. Sometimes one just needs to put ones foot down. Doctors are not mirical workers, nor gods, nor mind readers, just normal humans.

        Liked by 1 person

        Comment by Zolt — March 16, 2019 @ 12:23 PM

      • Hi Zolt, sorry for the late reply. I had to DEMAND that I come off an antiepileptic as a neuro would not listen/read a letter that a GP sent to him telling him what | was suffering from. He ignored it and 6 weeks later because my mum found that I was not the same person I walked into that GP’s room and told her I had to come off it. I was unable to tell my mother that I wanted to come off the AED. Surprise, surprise I am now consulting another neuro. One who is not even a specialist in Epilepsy. He definitely listening to me.

        I don’t know of anyone else’s experience with zonisamide. You Americans will know it as Zonegran.

        Liked by 1 person

        Comment by squirrel37 — May 5, 2019 @ 1:52 PM

  9. Right you are, Susan.

    But back then in the dark ages (1960’s), they didn’t check blood levels or much else.

    Not only did I go toxic from Dilantin, I went into a “deep sleep” for three days. 😦


    Comment by Phylis Feiner Johnson — March 14, 2019 @ 9:58 PM

  10. I have had Epilepsy since birth. I got OFF of Depakote that was taking my kidneys/liver. I take the OLD 1914 Phenobarbital, that babies take. If babies can take it, then I can TAKE IT. I am 70 now.
    Rita McDonald rvmcdonald@icloud.com
    PS If someone has Epilepsy, then the IRS should not garnish their Social Security. Cannot buy MEDS. This organization needs to get on to the IRS.

    Liked by 1 person

    Comment by Rita McDonald — March 14, 2019 @ 11:11 PM

    • Rita,
      Thank you for your inspiring statement & courageous information on standing up to the IRS.
      Ambulance, hospital, doctors & prescriptions bills are already making it hard to live with epilepsy.
      Therefore, as if Epilepsy is NOT already difficult enough, the SSA & IRS should NOT make it more difficult to survive for another day.


      Liked by 1 person

      Comment by BahreNegash Eritrea — March 15, 2019 @ 12:42 AM

    • Rita, I know of people who have been on Phenobarbitol — their whole life — with no problems.

      It’s individual chemistry. And obviously Depakote wasn’t for you.

      As for Social Security, I would go one step further.

      I would like to see our legislators LIVE on Social Security and try to survive medical conditions along with life itself.


      Comment by Phylis Feiner Johnson — March 15, 2019 @ 8:52 AM

  11. Phylis,
    You’re far more helpful & informative than the “Neurologists, ER Doctors & Pharmacists”, who have been & still are prescribing, vending & dispensing these Epilepsy medications to the uninformed, naive & desperate helpless patients like I had been for a long time, I wish you had your own Epilepsy hospital/clinic, where many of us would love to flock & seek caring treatment, seizure remedy & medication control from.
    Having exclusive epilepsy hospitals/clinics would have brought more professional epilepsy experts together, than just the general hospitals & clinics with less experience on neurological disorders & side effects of seizure medications.

    Thanks for this very informative & educational article, it’s great to find out where the difficulty in our lives are coming from.
    Having been trading & mixing medications from Lamictal to Dilantin to Keppra,,, & usually raising the doses of the prescriptions without even coming close to controlling my seizures, now I’m wondering if I’m better off with my seizures left untreated than having to add more physical & neurological disaster coming from the side effects of my medications.
    Thankfully, the experience of living with Epilepsy & the persistent side effects of the medications has been a learning process, helping some us to make it this far, with identifying the source of our difficulties for better focus on our daily life than we started with.
    Please keep up the excellent work you’ve been doing for a long time, sharing your experience & knowledge for many us to deeply understand & identify the struggle of living with Epileptic seizures & side effects of our medications.


    Liked by 1 person

    Comment by BahreNegash Eritrea — March 15, 2019 @ 12:30 AM

    • Oh Gerrie, my own epilepsy clinic would be a stretch.

      But thanks for the complement.

      Along with appreciation for all the toil and trouble that goes into each article.


      Comment by Phylis Feiner Johnson — March 15, 2019 @ 8:56 AM

  12. while I was on Epilim, sodium valproate, menstruatuon stopped age 42, not the menopause, no other reason found, but with all the new research I think it must have been the drug, it also causes foetal conditions and has been stopped for women of child bearing age

    Liked by 1 person

    Comment by Gail Barry — March 15, 2019 @ 4:03 AM

  13. I was told not to change the manufacturer of my levetiracetam (generic Keppra) once I started 10 years ago. Now I’m having trouble finding the brand (Mylan) and I am unable to reach my doctor to discuss this. Any thoughts?

    Liked by 1 person

    Comment by Tom Waltz — March 15, 2019 @ 5:30 PM

  14. The only suggestion I can make is to call directly — Mylan Pharmaceuticals Inc. at 1-877-446-3679 (1-877-4-INFO-RX)

    The FDA shortage list said there was a shortage of injections, but no indication of a tablet shortage.

    Have you tried calling around? Sometimes you find things in the places you least suspected.

    Like my husband found his Lidocaine at Walmart!

    On the corporate website they listed:
    US Contact Information
    Robert J. Coury Global Center
    1000 Mylan Blvd.
    Canonsburg, PA 15317

    So, you might try that phone number also.

    I’m sorry I can’t be more helpful, Tom. 😦


    Comment by Phylis Feiner Johnson — March 15, 2019 @ 5:53 PM

  15. Tom, re: generic Keppra, I have been through this a lot. The pharmacy I use will help search for it at other pharmacies if in short supply at mine. Might try that. Also, I located a customer service # for Mylan too 800 796-9526 Good luck!

    Liked by 1 person

    Comment by skolly9 — March 16, 2019 @ 1:19 PM

  16. Oh, incidentally “Gerrie”, I am slowly trying to wean myself off my large dose of Keppra (w/help from Neuro). I’d still like the option of remembering people’s names and not being confused BEFORE I become senile! Yes, I’ve tried many other meds.

    Liked by 1 person

    Comment by skolly9 — March 16, 2019 @ 2:09 PM

    • Skolly,
      In my desperate pursuit to find treatment for my grand mal seizures, little did I knew all these hallucinations, confusion, disorientation, memory lose, anger & frustration was coming from the side effects of my medications.
      But my experience looks like closely related to this article, as you can see the list of the side effects on this article, it’s totally shocking to find out the medications are doing me more harm than good.
      Like you pointed out, I’m forgetting, wondering & searching in my mind a lot of friends names & faces, before I became senile.
      And all this time, I was blaming it on aging, heading to be 60.

      I guess, I may need to wean of the medications before I lose my mind & end up in psychological treatment hospital.
      Good luck with your efforts to wean of your medications to find peace of mind.


      Liked by 1 person

      Comment by BahreNegash Eritrea — March 16, 2019 @ 3:42 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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