Epilepsy Talk

How are your meds affecting you? | January 24, 2015

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.

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, addictive.

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. Well since my doctor has started me on Vimpat, it doesn’t mix well with Tegretol. So she’s slowly taking me off of tegretol. Taking the two gives me dizziness, and double vision. a couple of the side effects of Vimpat are double vision, nausea, and some imbalance. 2 doctors have told me it’s a VERY powerful medication. So powerful one of the side effects on some people is mood swings.


    Comment by shawn33 — January 24, 2015 @ 5:16 PM

    • In my opinion Vimpat sucks, I’ve read about vicious mood swings, some people were suicidal, don’t know if anybody did the irreversible deed, maybe Phylis knows. My balance got so bad I couldn’t function, it delayed getting the book I’m writing done. My vision would double, then triple, I called it that funky Vimpat vision, the balance I called riding the Vimpat tornado. I’ve had a lot of bruises on my body thanks to Vimpat. I finally got off it in 2013, last dose was 9/15/13, check out Banzel, it is the one drug I’ve had no side effects from


      Comment by Don S. Miller — January 25, 2015 @ 1:09 PM

    • I took Vimpat to help my Tegretol control my partial seuzures. It made me drunk and basically in a zombie state. Speech slurred, sleepy, depression, etc. went off the Vimpat after a few months. Ive taken Tegretol for 12+years. Worst side effect is drowsiness but as long as im up and active i dont notice it. Occasionally i have double vision, but only a few times a year. My only complaint is i still have partial seizures, but it isnt that big of a deal to me.


      Comment by LEOlover7631 — January 26, 2015 @ 8:24 PM

  2. So, do you think the Vimpat works better for you than the Tegretol? Or is the the jury still out?

    Hope the Vimpat works better than it’s reputation.


    Comment by Phylis Feiner Johnson — January 24, 2015 @ 7:08 PM

  3. I would like to know if you or anyone has experience with long-term of use of tegretol. My 5-year old had to go on this because the Kepra doesn’t always work for his kind of epilepsy (partial complex) and didn’t work for him at all. So far he is good on tegretol and we are seeing a famous specialist. You still can’t help feeling hesitant about drugs for long term though. But I wish people who advise me to put him on keto diet etc would really know what they are talking about. people jump at diet to solve stuff but as far as I know there are not enough real medical studies to prove its efficacy.


    Comment by kinneret — January 24, 2015 @ 7:18 PM

    • Did you see Shawn’s comment above?

      As for the diets, there are clinical trials as far as effectiveness. But look at it another way, what have you got to lose? 🙂

      “In one study, researchers at the epilepsy center at Rush University Medical Center in Chicago, Illinois, reviewed medical records of 34 adult patients with intractable epilepsy, mostly women, with a mean age of 38 years. Of these, 79% followed the MAD and 21% followed the LGID.

      Overall, 44% of the patients reported at least a 50% improvement in seizure frequency. Of these responders, 80% were on the MAD and 20% on the LGID.

      “This is very similar [to], if not better than, the efficacy of antiepilepsy drugs,” commented Antoaneta Balabanov, MD, from Rush University.

      Quality of life was improved in 79% of the patients overall. This included not only 93% of responders but, importantly, 68% of the nonresponders, said Dr Balabanov.

      Improved quality of life can be as important as seizure control, or even more so, she said. “Going from having 5 seizures every 6 months down to 3 seizures is not going to let you drive, and it’s not going to let you do lot of things you like to do, but if your mood improves, if you’re thinking more clearly, if your memory problems improve — and these are all those things are very common in epilepsy patients — these quality-of-life issues will make even more of a difference in your life than the seizure control itself.”





      Comment by Phylis Feiner Johnson — January 24, 2015 @ 7:39 PM

      • I’m not epileptic. But my so has been from birth. I base his feelings and side-effects on his behavior and people with epilepsy that can communicate their side effects. And most stories are horrible. Some are not. I pray everyday that Nathaniels are not horrible for him. Physical evidence is dark circles under. His eyes. Tremors in his hands. Not being able to perspire. And sadness that his teachers sometimes report . He is 10 yr. Old living with Dravet Syndrome and Autism. Non/verbal I’m sure has to be the most frustrating for him. He can says words. And will use one words to express if he gets hurt or is sick. His unconditional Love and expressions light up my life. I Love Him So Much.


        Comment by pam — January 27, 2015 @ 7:17 AM

  4. Thanks, Phylis. I guess what I meant was effects of taking those drugs from childhood on/or on children. It’s very difficult for me to get my kids to eat anything so a diet like KETO looks like it would be almost impossible to follow for us…


    Comment by kinneret — January 24, 2015 @ 7:50 PM

    • I agree. Restrictive is to say the least. 😦


      Comment by Phylis Feiner Johnson — January 25, 2015 @ 10:25 AM

    • I started Tegretol at 12 i’m now 23. I have tonic clonic and simple partial seizures. The tegretol is great for the tonic clonics but i still have partials almost daily. Its something i have learned to deal with. Id rather have partials than the tonic clonics hands down. The biggest struggle i have had in the 12+years i have been on it is anxiety but that didnt start until age 19 and i have learned to manage that as well with no need for meds. As a kid, my biggest complaint was drowsiness. It was hard to focus at school. That will be an issue no matter what meds your child goes on.

      I havent tried the KETO diet before, but thats mostly because i dont trust it. I dont trust anything but my meds and because seizures are so terrifying id rather stay with what has worked for me. For some the KETO diet just doesnt work and im not leaving it up to chance.

      Hope that helped you understand Tegretol a little better at least. Good luck!


      Comment by LEOlover7631 — January 26, 2015 @ 8:36 PM

  5. Thanks Phylis this is great information .


    Comment by Mona Rowe — January 24, 2015 @ 9:07 PM

  6. Just one thing Phyllis. Clobazam is sold in the US not under Frissium but Onfi. That’s what I take.


    Comment by brigitte67Brigitteweber67@yahoo.com — January 24, 2015 @ 9:42 PM

  7. Phyllis,
    Thank you for a lifetime crusade fighting Epilepsy,,, many of us learned how to cope with seizures & medication side-effects more from YOU than from our Neurologists, Hospitals, Nurses & Pharmacies.
    Thanks for your information & inspriring drive to conquer Epilepsy, some of us have learned to survive the odds for YOU !!!


    Comment by Gerrie — January 24, 2015 @ 10:13 PM

  8. You left out something, according to The Patients Right to Know by Ralph Karler adverse effects of Dilantin, is also “seizures”. This is a terrible drug. in my youth, they pumped me 400mg a day. only to suffer a continual prodrome of having a seizure. Same thing with Mysoline, Tegretol, and Valproric acid.


    Comment by hscguineapig414895 — January 24, 2015 @ 11:31 PM

    • Sigh. Dilantin DID stop my seizures. But at the cost of being a zombie. It sounds to me like you were drug resistant. Is anything working for you now?


      Comment by Phylis Feiner Johnson — January 25, 2015 @ 10:29 AM

  9. Yep, I’ve had many of those side effects for keppra and dilantin. Fortunately, they’ve been on the mild side. I’ve learned that my body does not tolerate the doeses my docs prescribed; I need to take slightly less than my docs prescribe. Otherwise, I get toxicn with double vision, dizziness and sleepiness.


    Comment by Tom Waltz — January 25, 2015 @ 3:31 AM

    • I went into a coma from Dilantin because the dose was too strong for my (then) 5 foot 9 inch 105 pound frame. Toxic is putting it mildly. 😦


      Comment by Phylis Feiner Johnson — January 25, 2015 @ 10:34 AM

  10. I had a terrible time on both Topamax and Zonegran. With Topamax I had mood swings and my mental faculties were a state but Zonegran was just pure evil for me. Some mornings I would wake up in utter despair, other days I was overwhelmed by the sensation that there was a black, oily entity inside of me and on a few occasions I was convinced I was going to die that day. In the end I gave up work to sort it out because the pressure of trying to keep it together was too much. It was getting worse and I knew that I was on the verge of snapping so I left before I ended up bludgeoning my co workers with a toner cartridge. That stuff really did scare me.


    Comment by bardotbarbiturate — January 25, 2015 @ 10:10 AM

  11. That sounds awful. Did you find a drug that works for you. Are you back at work?


    Comment by Phylis Feiner Johnson — January 25, 2015 @ 10:36 AM

    • After a dalliance with trying to come off of meds altogether, I went back to Lamictal. I’d stopped taking it a few years previous on the advice of my neurologist who thought “It probably wasn’t doing anything anymore anyway” (I’d been on it for 13 years). I wasn’t fond of staying on Keppra which I was also taking so asked to go back to Lamictal which had been the least troublesome. I haven’t had a TC since last February although my brain did have a loud grumble last night.

      I’m not back at work although I am looking for a job. I’ve decided not to look for full time work, all of my quietest periods have been whilst I’ve been unemployed, but part time work isn’t any easier to find.


      Comment by bardotbarbiturate — January 25, 2015 @ 12:08 PM

      • Lamictal has been very good for me. The only side-effect was that at first, it made me crazy/hyper.

        So I cut down the PM dose from half at 5:00 and half at bedtime. Since then it’s been successful for me. 5+ years and counting.

        My seizures are controlled. But I take Lamictal and Klonopin too.


        Comment by Phylis Feiner Johnson — January 25, 2015 @ 2:03 PM

  12. I’m on generic Lamictal (lamotrigine), generic Keppra (levetiracetam), and Banzel (rufinamide), seizure control has slipped some as my body becomes immune to drugs over time or they lose some of their efficacy, but my seizure control is better than when according to my dear old Mom; I was having 2-4/day. The ‘medicinal stew’ I am currently on is the only one that has given me no side effects; I could give you all sorts of stories about Vimpat; for a time, it worked well, but the balance problems were hell. I couldn’t walk a straight line, did try the mind over matter thing and it worked for about five minutes until the loss of balance thing took control. I couldn’t take three steps without falling on my ass. Finally I had enough and told Doc Penovich I wanted off that bastard drug. Things were going cool after I was off it, but Doc decided I needed a little something extra so we tried Onfi; it was worse than when I was on phenobarb (Mebaral, that is turned into phenobarbital in the liver. I was zombified if there is such a word. Got off of that one, I couldn’t function then, I’m a writer and couldn’t write for about two months, and when I did, it was crap. And talk about being blasted tired, whoo! Depakote, that I was titrated off of about 10 years ago caused weight gain that hasn’t gone away, then again I’m now 51 and pounds just don’t come off like when I was in my 20s and 30s.


    Comment by Don S. Miller — January 25, 2015 @ 12:51 PM

  13. Topamax didn’t work for me at all. I was in a mental fog and it didn’t control my seizures. But zonisamide has been working quite well. Some minor side effects but nothing too bad. Thanks for this great list and all of your posts in general.


    Comment by Letizia — January 26, 2015 @ 11:50 AM

    • Anything I can do to help…that’s what I’m here for!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 26, 2015 @ 1:06 PM

      • Hi Phhylis ,
        It’s been for days since my baby girls has been on LAMICTAL and her generic Keppra ! We are still watching for allergic reaction since she was allergic to Troleptol but she looks ok ! She has not had a gran Mal siezure sin Wednesday but she did have a absence yesterday that lasted about a minute. I am keeping a seizure diary and also looking into diets that would help ! Your information has very helpful! I wanted to know if you know anything about essential oils for siezure?


        Comment by Mona Rowe — January 26, 2015 @ 3:03 PM

  14. I meant Trileptal sorry!


    Comment by Mona Rowe — January 26, 2015 @ 3:04 PM

  15. Sorry for all the misspelling ! I guess I have not been getting much sleep .


    Comment by Mona Rowe — January 26, 2015 @ 3:05 PM

  16. Don’t worry about the spelling. After 35+ years of writing, I’m still pathetic.

    Here are some references from my favorite source (Epilepsy Foundation of Ontario) Cannabis Sativa (Marijuana) Chinaberry Juice, Ginkgo Biloba (VERY CONTROVERSAL) ”Qingyang, Nine Herb Extract.

    I also write a column about “Natural Herbal Remedies for Epilepsy”


    There’s all kinds of stuff in there.

    All of the other articles are big on Frankincense being the Essential Oil of choice for any kind of brain disorder.

    Frankincense has a molecular makeup that includes sesquiterpenes, that is able to cross the blood/brain barrier.

    These sesquiterpenes stimulate the limbic system of the brain and other glands within the brain, promoting memory and releasing emotions.

    Frankincense slows down and deepens the breath. The therapeutic properties of Frankincense oil are antiseptic, astringent, carminative, cicatrisant, cytophylactic, digestive, diuretic, emmenagogue, expectorant, sedative, tonic, uterine, vulnerary and expectorant.

    To help prevent the onset of seizures:

    Apply 1 drop Frankincense, on the bottom of each Big Toe, or at the base of the neck and temples, each night.
    Can also place 1 drop Frankincense under the tongue, each night.

    Can also try Lemon and Orange, 1 drop each internally or on bottoms of Big Toe- In pseudoseizure, the two brain hemispheres start to fight or don’t communicate.

    This will help stimulate both sides of the brain.

    Lemon is for Left-brain function.
    Orange is for Right-brain function.

    When you feel a seizure coming on, inhale Frankincense, deeply. Basil has known to help too.



    Comment by Phylis Feiner Johnson — January 26, 2015 @ 4:29 PM

    • Phylis, my daughter just had two partial complex seizures this evening . I called the on call doctor he said to up her dose of Lamictal . Just to watch to see if she has allergic reaction ! I am so sacred !


      Comment by Mona Rowe — January 26, 2015 @ 8:58 PM

      • Lamictal has always proved good for me…normally and in times of crisis. Deep breaths and try to have a little faith.


        Comment by Phylis Feiner Johnson — January 27, 2015 @ 8:47 AM

      • She slept last night ! She was so tired after her to seizure . We increase her medicine this morning and keeping her home from school! She says she is vert sleepy! Thank you I will keep the faith ! I know we just have to get the medicine right ! Have. Great day Phylis!


        Comment by Mona Rowe — January 27, 2015 @ 10:19 AM

  17. I am so scared !


    Comment by Mona Rowe — January 26, 2015 @ 9:13 PM

  18. This great to read. I have lived on Topamax for years. Yes it does effect the mind, but once your body adjusts you learn to live with it. No other medications worked for me, so I am thank-full.


    Comment by Launa Germiquet — January 28, 2015 @ 3:32 PM

  19. It’s great that you found your “Magical Medicine” that really works for you!


    Comment by Phylis Feiner Johnson — January 28, 2015 @ 3:54 PM

  20. Seeing how all these meds have so much potential for problems, this is why I insisted to my Doc that we try one med at a time, before we start mixing meds. It’s hard to know how one reacts just to one drug, let alone to 3 or 4 different drugs at the same time.

    When i was on Dilantin, for some reason i could not get to the therapeutic range, and it also seemed to make my seizures much worse.

    Lamotrigine, made my seizures worse, to the point were they were beating me up.

    On Keppra, i had numbness in my hole arm for like a week, couldn’t even sign my name when i went to the ER complaining about it.

    Now i’m on Gabapentin and i love it. Weight gain i don’t really have, maybe that is a womans thing, because i was actually able to lose weight on it. The other symptoms on it i don’t have. Why do i like it so much, well it has the ability to schedule my seizures to the morning time, since the med only works for 6 hrs after taking it. How? because by the morning i don’t have any meds in me and i won’t take my meds until an hour after i have woke. Within that hour is when i have my seizures if i have one. Before this med, i would have them at the worst time and most inconvenient times. It seems like this is a sugar pill, since I can’t really tell of any side effects. So my last 23 out of 25 seizures have been in the mornings and i’ve been on it for a little over 2 yrs.


    Comment by Zolt — January 29, 2015 @ 5:38 PM

  21. I go by Adults comments. My non/verbal so with Dravet Syndrome is and has been on these similar AEDs. Physical noticeable side effects are Depakote tremors
    Topirimate he can’t perspire. Onfi not sure. Banzel not sure . Just hope and pray his mind and sometimes sadness he expresses get better. In a world of harsh drugs to treat epilepsy can be devastating for the patient. The American Epilepsy society does the best they have access to to relay empathy. But until you are the one experiencing….


    Comment by pam — January 29, 2015 @ 5:52 PM

    • Pam, it seems like you’ve been through nothing but disappointment.

      Has your doctor ever suggested the Vagus Nerve Stimulator?


      Or one of the anti-epilepsy diets?


      It seems like the traditional methods aren’t working for you. And something else (especially as benign as one of the diets) may work better.


      Comment by Phylis Feiner Johnson — January 29, 2015 @ 6:09 PM

      • Thanks Phyllis. Yes the vagus nerve stimulator was offered. My husband and I did not opt. For. And the diet plan as well. We are going to slowly change his diet to eat non/processed foods. Buy organic. And cut out dairy sect. It’s not so much Nathaniel’s seizure control awake he does not seize. But nocturnals are frequent. Under 30 seconds and averages 3 to 7 per week. Sometimes will go sveral nights w/o visible ones. But abnormal eegs show activity that we don’t see. We are starting a cannabis trial this spring. He is a candidate for Epidiolex. Hoping for success. This new orphan drug has shown promising in Dravet Syndrome and LGS. And other intractable epilepsy’s. So while these 4 AEDs he is in now does control awake seizures. We hope to be able to titrate some if these if Epidiolex works. That’s our hope. Is to have Epidiolex as an add on drug. And reduce the Doses f the others. Thanks for your compassion and listening. Helps Tremendously.


        Comment by pam — January 29, 2015 @ 6:22 PM

  22. Smart boy Zolt! One meanie at a time. Easier to beat the army.

    When I was on Dilantin, they almost killed my 5′ 9″ 105 lb frame. Coma and the works. Not to mention a walking zombie.

    Lamictal has been very good for me, for 5+ years. YAY! (At lease they got one thing right.)

    Keppra I can’t talk about (because I never took about it) and I never want to know about it. (Too much bad press.)

    But I’m glad you found your magical med. Especially since you can schedule your seizures. How many people can say THAT?

    Zolt, you’re a prize. And I mean that in the BEST way!


    Comment by Phylis Feiner Johnson — January 29, 2015 @ 5:59 PM

  23. Pam, as you know, there are very promising results for cannibus.

    I hope you are in the latest, most appropriate trial. (What is Epidiolex?)

    The idea of cutting off all processed foods and dairy is a good one.

    Have you considered a gluten-free diet?


    Comment by Phylis Feiner Johnson — January 30, 2015 @ 10:01 AM

    • Hi Phylis
      British Biopharmaceuticals company GW Pharmaceutical has approved clinical trials for their Orphan Drug Epidiolex. Cannabis based no THC drug.Nathaniel is a candidate fr next phase of trials.
      Here in NC where we live. Close Doctor monitored 3 month Double Blind Placebo. Hoping he’s not taking the placebo but will be able to tell if he isn’t. The Gluten Free Diet YES would love to do. I am waiting on Medicaid to respond with Nutritional coverage of cost that they may provide fr him. Under his Autism Diagnosis. This is thankfully a new added Coverage for Autism. We Struggle Financially. But will transition the best way we can. Food Is just so outrageous. $$$. You should check out the GW Pharmaceutical Website. Very Promising. Have a Great Weekend. If you are ever traveling to our Crystal Coast area please let us know. It’s beautiful here.


      Comment by pam — January 30, 2015 @ 10:31 AM

  24. Epilepsy and the Celiac Diet


    Unsafe Gluten Food List


    Just in case it’s of interest to you…


    Comment by Phylis Feiner Johnson — January 30, 2015 @ 12:41 PM

  25. Thanks Phylis for the diet links,.. hoping you and Everyone has a Great Super Bowl Weekend.. Nathaniel our son his Birthday is Sunday. He will be 10 yr.old… My Baby… no my Big Boy… still my baby.. Giggle….. Take care and Seizure Relief to All…


    Comment by pam — January 30, 2015 @ 4:36 PM

  26. Pam, I didn’t even know it was Super Bowl Sunday. Too busy writing I guess!

    Have a terrific weekend and have some (non-meat — I’m allergic) snacks for me. 🙂

    And no seizures, please!


    Comment by Phylis Feiner Johnson — January 30, 2015 @ 4:53 PM

  27. Hi Phylis , it Mona ! We have been at my daughters orchestra concert since yesterday . We get to watch her perform Saturday! We are keeping a close watch on her as we increase the Lamictal and make sure no allergic reaction ! Trying to keep everything normal as possible for a 17 year old girl! I wanted to know if you had any informat about Gluten Free diet. Thank you again for your help and support.


    Comment by Mona Rowe — February 6, 2015 @ 6:37 PM

    • How’s the concert going?

      Here’s what I have on Celiac Disease and the Gluten Free diet.

      Epilepsy and Celiac Disease


      Unsafe Gluten Food List


      Have you tried the essential oils yet?

      Hope it’s a great concert!


      Comment by Phylis Feiner Johnson — February 7, 2015 @ 11:17 AM

      • Yes the concert was great ! She did well ! I new she was tired and exhausted ! She said she is having quiet a few dizzy spells ! We increase the medicine again 50mg this morning and 50mg at night . This was her first dose of 50mg this morning I gave it to Herat 7:00am and 10:00am she feels super dizzy and feels like her head is swimming ! She said she is going to get thought this and try to adjust to the Lamictal ! She is still taking the generic Keppra 1000mg twice a day and when I see her neurologist I want to start weaning her off the keppera . I started the frankincense oil lat night! She was exhausted when we got home and broke down saying that her siezures or medicine is messing with her mind she having trouble concentrating at school! Her grades are dropping and she is a straight A student and she feels like a failure. I took a deep breath and listen to what she was saying and gave a huge hug ! Told her we would get throughout this and we will do whatever she needs to help her ! She said through her tears I hAd a great time playing in the concert but now I had to mAke up,all my homework am feel like it’s to much. I calmed her down and started the frankincense on her . She washed her fAce and gave me hug and said I am going to try to do my homework . She did and spent about 3 hours doing it . We sat her and I made sure she was ok try to get her to laugh and let her know we are there ! I am still getting a second opinion but want to keep her neurologist too. I am also going to look into gluten free diet ! Sorry to rant but I know you care ! Have a great day!


        Comment by Mona Rowe — February 8, 2015 @ 10:37 AM

  28. I think tapering off of the Keppra would be great. I’m happy the concert was a success and she didn’t have a meltdown.

    A second opinion would be appropriate. She doesn’t deserve to suffer. Such a bright, dedicated girl. (And tell her to calm down about her homework. She WILL get it done. It’s a matter of confidence, which you’re doing a beautiful job in boosting.)

    Happy Birthday Mona. Wishing you and all those you love health and happiness.



    Comment by Phylis Feiner Johnson — February 8, 2015 @ 12:45 PM

    • Thank you Phylis enjoy your Sunday!


      Comment by Mona Rowe — February 8, 2015 @ 2:27 PM

  29. Hi, Phyllis,
    Do you know if it is common for people to have side effects from an AED sometimes (in this case, the drug in question is Topamax), but not always? This is confusing to us. Our son can have some of the side effects of Topamax (mood swings, irritability, acne, depressed appetite), but it is not consistent. Do other people experience that?


    Comment by Martha — May 9, 2015 @ 6:25 PM

  30. The best advice I can offer is the keep a daily seizure diary. Note sleep patterns, food and times of meals, daily activities (including emotions, too) times meds are taken, side-effects and timing.

    That’s only a guess on my part, but I wonder if something else is triggering these side-effects.


    Comment by Phylis Feiner Johnson — May 9, 2015 @ 6:57 PM

    • All sorts of other factors could be affecting him. Autism spectrum, multiple chemical sensitivity, unsatisfying personal life. It can be very difficult to know what is going on with people with developmental disabilities (even if they are intelligent, they may not communicate very effectively).


      Comment by Martha — May 9, 2015 @ 7:56 PM

  31. Martha, I can’t even imagine not being able to communicate effectively.

    The very thought must be so difficult and frustrating.


    Comment by Phylis Feiner Johnson — May 10, 2015 @ 9:12 AM

  32. Avoid zonegran, its an evil drug that was not created to treat epilepsy trust me. It causes your brain to mush up and you lose who you once were. Its my belief that this is intentional as this was given to both me and a relative of mine who have supposed “mental health” issues (in reality we are both sane, I can assure you).
    They want to drown out the mind of anyone whose brain could be considered a threat to their evil practices.
    Please be careful and DO NOT TRUST YOUR DOCTOR


    Comment by Anon — July 6, 2017 @ 12:40 PM

  33. I have dark circles under my eyes now and trouble with my vision since being on vimpat and zonsimide. Very frustrated. I look like a zombie. Anyone else having this problem? Solution?


    Comment by Jacqueline Sustik — February 3, 2018 @ 12:05 AM

  34. Phylis Feiner Johnson, the downside of the Lamotrigine, as is the case with my prior Epilepsy medications, would be short-term memory loss. The Lamotrigine, as well as 4 fractures, led to my being diagnosed with Osteoporosis. Heck!


    Comment by Jeffrey Liakos — July 21, 2018 @ 7:53 PM

    • Lamotrigne has been very effective for me. After I got over the initial hump, I’ve been side-effect free as well as seizure-free for 10+ years.

      As for the memory loss, I don’t know. 🙂


      Comment by Phylis Feiner Johnson — July 22, 2018 @ 11:33 AM

  35. Phylis Feiner Johnson, some of these medications report different side-effects. I am not going to list all of them. What happens when a person does not experience the reported side-effects? Are they just able to tolerate the medication more? Despite the fact that Epilepsy can handicap people from driving, unless a Neurologist feels that someone is stable enough to do so, would it surprise you if more people were able to do so despite this obstacle?


    Comment by Jeffrey Liakos — July 27, 2018 @ 10:31 AM

  36. Phylis Feiner Johnson, aside from the Osteoporosis, the only other aggravating issue is short-term memory loss. This is just my experience.


    Comment by Jeffrey Liakos — July 28, 2018 @ 10:18 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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