Epilepsy Talk

Epilepsy Drug Side-Effects | October 27, 2013

They’re necessary but not necessarily nice. And every med has its own side-effects. Just as different people experience different difficulties. But here‘s the low-down on the possible side-effects. I hope you don’t have to suffer any of them. (Or as few as possible.)

Aptiom (eslicarbazepine acetate) — dizziness, drowsiness, nausea, headache, double-vision, vomiting, fatigue and loss of coordination.

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 (brivaracetam) — mood or behavior changes, anxiety, panic attacks, trouble sleeping, impulsiveness, irritability, agitation, hostility, aggressiveness, restlessness, hyperactivity (mentally or physically), depression.

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.

Frisium (clobazam) – weakness, drowsiness, dizziness, poor coordination, drooling, restlessness, aggressiveness, anxiety, increased heart rate, tremor, addictive. (Not sold in the United States.)

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.

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. I take Carbamazepine, Topamax and Topiramate. I didn’t know about some of the side effects of Topiramate…there are times when I have difficulty expressing my thoughts when it’s in my head. I’m not sure if it’s a med thing or not but it’s good to know that it could be a side effect. I also just started taking it last year and lost 15lbs in the last year so maybe that had something to do it. (I wasn’t dieting or exercising vigorously or anything, either). Thanks for the information, Phylis! 🙂


    Comment by sitagaia — October 27, 2013 @ 2:16 PM

  2. I’m real glad I could explain some of the side-effects.

    Sometimes it’s so confusing!


    Comment by Phylis Feiner Johnson — October 27, 2013 @ 4:21 PM

  3. Thank you for sharing this information Phylis. Its so difficult to explain to family/friends how I am feeling due to the medication.


    Comment by Robert Blomeier — October 29, 2013 @ 3:21 PM

  4. Sometimes it’s a real nightmare, Robert.

    That’s why we’re together in this “family”.

    To explain (and complain), add a listening ear, a helping hand, and share our experiences with others.


    Comment by Phylis Feiner Johnson — October 29, 2013 @ 3:37 PM

  5. I have had “Keppra rage” but it soon resolved with a small reduction in dosage, my neurologist is obsessed with reducing my tegretol because of potential side effects? I don’t get any? Go figure 🙂


    Comment by mickcgorman — October 30, 2013 @ 5:00 AM

  6. Sometimes truth is stranger than fiction. Did you ask him why???


    Comment by Phylis Feiner Johnson — October 30, 2013 @ 10:36 AM

    • I have been taking Vimpat for sometime now after trying many other meds. I have had times when I have had extremely rapid heartbeat and also noticed since taking it my memory is absolutely terrible. But on the other hand it had been the most helpful in helping to control my seizures.


      Comment by Belinda — November 7, 2013 @ 2:47 PM

  7. Most of us have memory loss from AEDs. It stinks.

    As for Vimpat, at the risk of sounding like a cliché: “If it ain’t broke, don’t fix it”! 🙂


    Comment by Phylis Feiner Johnson — November 7, 2013 @ 2:59 PM

  8. 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.


    Comment by kristy rastle — December 3, 2013 @ 11:59 AM

  9. OMG, Kristy. I knew about the possibility of renal damage (incontinence) but certainly not about turning blue.

    THANK YOU for the heads-up.

    (I hope you weren’t one of them.)


    Comment by Phylis Feiner Johnson — December 3, 2013 @ 5:57 PM

  10. had a physical last december, primary care doctor had me get some lab work done and my keppra levels are fine.


    Comment by Crystal Cahill — April 7, 2014 @ 6:27 PM

  11. I think that discipline is difficult for all of us to control…


    Comment by Phylis Feiner Johnson — April 7, 2014 @ 8:32 PM

  12. I am currently taking Vimpat, Lamictal, and Keppra and a low dosage of Indural for tremors and mild hypertension. In general I have had very few of the physical side effects that are listed above. Except a few that might be similar to irritable bowel syndrome. Others include irritability, tremors, nasty short term memory loss. But those and others similar, might be related to my age. Other nasty side effects were also I feel were associated to Depakote. Especially double vision, extreme tremors. I became toxic with that and no longer use it.


    Comment by Jeff Laugtug — April 8, 2014 @ 11:05 AM

  13. Well Jeff, that sounds like a lot of me. Don’t forget to feed your brain nutritionally at the same time.

    Brain Food for Your Health…



    Comment by Phylis Feiner Johnson — April 8, 2014 @ 12:25 PM

  14. I am taking a low dose of Vimpat and was on add-on therapy with Trileptal. I had the worst and most frequent head aches of my life which I attributed to Trileptal. Just titrated off of Trileptal as of 3 days ago and the headaches seem to be better. I’ll stick with Vimpat for the near future at least. I’ve tried many and all controlled my complex partials but none controlled my continuous (every day and many times a day) simples. I think Vimpat and Lamictal have had the best side-effect profile for me, but even those have not been great. I seem to be most susceptible to the fatigue and memory issues that all AEDs seem to be able to cause. I also attribute recent symptoms of IBS to these meds. Never had it before. Phylis – great website. I appreciate your information and the comments I’ve read are helpful and insightful, too.


    Comment by Merrily Porter — April 23, 2014 @ 11:54 AM

  15. So I take it you’re still really looking for your “magical med mix”.

    I also have IBS. What do you take for that? Because AEDs can have a positive or negative effect on your IBS.

    I know that Lamical has helped me…


    Comment by Phylis Feiner Johnson — April 23, 2014 @ 1:57 PM

  16. Actually, I think I’m taking a break from looking for a magical mix. Every time I’ve tried add-on therapy, I’ve been so sleepy, fatigued, out of it in general that I’ve had a hard time functioning. I’m going to stick with Vimpat for a while. I’m going to have a MEG in the next few weeks because I’m still searching for a seizure focus. No one has been able to determine the focus of my seizures as of now. I’m going to wait for the results of that and then decide what to do — try more meds, live with the frequent SPS, try the modified Atkins diet, or ???
    I don’t take anything for my IBS yet. So far I’ve had no pain from it, just inconvenient symptoms like urgency if you know what I mean. My gastro said that the drug she would prescribe would be sedating so I won’t even consider it right now.


    Comment by Merrily Porter — April 23, 2014 @ 2:40 PM

    • ask your gastro , on wf , gf cf , diets .. i had to cut out wheats , glutens , even milks .. we take meds for it thats OTC now .., even went as far as changing the milks , Lactose-Free Milk, my son , is on organic milk , { which this yr , had an effect on my stomach }, went to another brand , vanilla milk , by Califa , it too is organic , so far so good , they came out with coconut vanilla milk , only at few stores , walmart carries it plus , Save mart , & whole foods carries the full line , even juices ..it was my nero , that told me , many Epileptics , get the stomach issues , that we , have to go on certain diets , , but cut out , the items , thats causing it ..also , try a probiotic , IT REALLY WORKS too .. even my dr { GP & NERUO } both agree , on it .. good luck


      Comment by cathy — June 17, 2014 @ 5:23 AM

  17. The Modified Atkins Diet (M.A.D.) is a good idea. (I say that because I’m on it!)

    Do you keep a daily seizure diary? That might help with triggers, timing, etc.

    Include your sleep patterns, what you ate, daily activities AND emotions, times of meds, times of seizures and, if you can, duration of seizures.

    As for IBS, I’ve been doubled over for 4 days. Ugh.


    Comment by Phylis Feiner Johnson — April 24, 2014 @ 9:06 AM

  18. I’m so sorry about the IBS! Must be awful. Have you had success with MAD? Have you found it difficult to comply? Do you have the support of a dietitian? I do keep a daily diary but so far have not been able to determine any helpful patterns or triggers. Do you mind telling me what meds you take?


    Comment by Merrily Porter — April 24, 2014 @ 10:45 AM

  19. M.A.D. is easy as pie. (Ooophs. Pie is off the menu!)

    Both my husband and I are on it. But Arthur is a Health and Wellness writer, very familiar with Atkins.

    He lunched with Atkins and wrote promotions for a health newsletter by Atkins. So we know the health and science behind it.

    That doesn’t mean YOU should embark upon it without some research.

    The problems I’ve had are constipation and weight loss. The weight loss thing has become kind of expensive. But I guess that’s a high class problem.

    It is user-friendly and pretty easy to stick with. Although I don’t strictly adhere to it. (Anything for carrot cake!)

    Look into the Atkins diet, but like everything else, make an informed decision.

    As for meds, I take Lamictal, Buspirone and Klonopin…plus Effexor for clinical depression.


    Comment by Phylis Feiner Johnson — April 24, 2014 @ 7:37 PM

  20. Avez-vous de retourner l’argent emprunté à un ami? Vous cherchez un soutien immédiat, mais ne pouvait pas obtenir le bon choix? Vous pouvez faire votre choix d’emprunter l’accord parfait des prêts de 3 mois. Il va sûrement vous faciliter la finance qui peut être utilisé pour beaucoup plus de faits qui sont tout à fait nécessaire. Il n’est pas nécessaire de se soumettre à un processus difficile quand vous êtes prêt avec votre esprit d’emprunter finance. Cet accord serait sûrement vous permettre de régler avec tous vos exigences inattendues qui vous fatiguant et important pour vous. Prêts de 3 mois sont connus comme la forme la plus courte de la finance et les personnes à faible profil de crédit peuvent également accéder à ces prêts. Il n’ya pas les documents requis et les gens ne prendre que quelques minutes pour mettre fin à l’ensemble du processus et ensuite, ils se qualifient pour ces prêts à gagner de l’argent. Alors, don? T donner beaucoup de votre temps pour toute affaire quand vous savez que ces prêts seraient sûrement finir vos exigences en quelques heures. Il ya aussi un bon élément balisé par ces services et il est connu comme arrangement rapide de la finance pour les personnes portant des arriérés, par défaut, CCJ, l’insolvabilité, le retard de paiement et ainsi de suite. Si vous n?? T voulez vivre avec vos dettes et que vous voulez profiter de la main facile et sûre de l’argent, vous avez besoin de frapper cette affaire qui est juste fait pour vous. Il peut vous aider à aider toutes sortes de mauvaises dettes qui prennent du temps à être terminée. Remboursement arrangé jusqu’à trois mois sera utile pour vous débarrasser de votre dette sans aucun obstacle. Donc, vous ne devriez pas pleurer pour quelque chose que vous pouvez facilement manipuler l’état sans se sentir instable dans n’importe quel mauvais état. Donc, profitez de l’aide monétaire en quelques heures et il permettra de vous sentir fort dans tous les domaines et il est juste vaut option pour vous et vous pouvez sortir de tous les problèmes au sein d’un couple d’heures. Alors, n’hésitez fort que c’est juste le match idéal pour vous. Profitez de financer à la fois et de se débarrasser de toutes les demandes d’incertitude sans se demander ici et là. Don? T regarder derrière car il vous est offert à des taux bas et vous vous sentez satisfait et cela vous rend très fort dans chaque manière. Obtenir un prêt à frapper cette affaire bientôt pour de l’argent arrangement Résumé: prêts de 3 mois sont le support de trésorerie solides et l’on bénéficie de fonds suffisants pendant craquements de trésorerie. Kelse Roy est un spécialiste de longue durée dans des conditions financières. Ecrire sur différentes questions liées à l’emprunt n’est pas seulement sa passion, mais aussi son dévouement pour le secteur financier pour servir de nombreux demandeurs de prêt.


    Comment by asics kayano pas cher — June 14, 2014 @ 11:59 PM

  21. Did anybody here develop a cough while taking Topamax? How about irritability (even rage)? Did anybody actually gain weight, rather than lose it?


    Comment by Martha — July 30, 2014 @ 3:26 PM

  22. Side effects of Topamax. (They’ll make your head spin.)


    Patients rate Topamax for different conditions. (Sort of interesting, although there’s not lots of epilepsy presented.)



    Comment by Phylis Feiner Johnson — July 30, 2014 @ 5:55 PM

    • Reading some of the comments that people were leaving for Topamax, I could have wrote them myself. I also take Topamax for my seizures. I was put on it because I also have hemipeligic migraines and take other medicines for that. But before the Topamax I was on Lamictal having been taken off Depakote. And I felt just wonderful on the Lamictal, I didn’t have any side effects, I just finally felt great. But then my new doctor decided because of the past migraines I should be on Topamax and boy oh boy did the side effects start right away!! I have been on it since April 2014, and I started out at a healthy 137 pounds, and I now currently weigh 116 pounds. Which, I have brought up the weight loss several times to my doctor, as I had gastric bypass surgery in 2008, so such getting down to such a low weight for me can bring on a whole other set of complications. Anyway, back to the Topamax. Immediately, and until this very day, I still get horrible pins and needles every single time I take my medicine, which I have come to deal with. I constantly will be having a conversation with my husband or someone else for that matter, and totally forget what I was going to say right in the middle or even seconds before I was going to say it and have to ask what we were talking about. I always feel like I am walking around in a fog, and constantly have to write things down the moment I think of something, when my husband isn’t home, like what we need to pick up at the store, etc. or else, lord knows, I would walk around the grocery store aimlessly. I also notice that when I type things out, I double type words, as if I have forgotten I had already typed them. I have a fairly ok long term memory while on the medicine, as in I remember most of my college work, I can still do most of my mathematical calculations and such. But anything in the here and now, is very hardly retained at all. I don’t think I have speech problems, just a lot of memory issues, my husband does tell me I stare off a lot and it freaks him out because he thinks I am having a seizure. I wake up in the morning usually feeling pretty darned good, ready to take on the world. Then, I take my Topamax, and I am gone, I fall into my zombie world, for the next 12 hours, until I take my next dosage. It’s an endless cycle for me, which I hope to change when I see my doctor in 2 weeks. I hope that she listens to me, and actually do something about my medicine. Sorry for my long rant about my Topamax journey..


      Comment by Erin T. — October 16, 2014 @ 1:16 PM

  23. Lamictal is VERY good for me. 10 years and counting.

    As for Topamax…why stay on the same med if it’s just causing you all this distress?

    You know the side-effects about Topamax already.

    As for migraines, research shows that Depacon (Valproate) and your buddy Topamax (Topiramate) are effective in treating both migraines and epilepsy.

    And each has FDA approval for treating them together.

    Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra (Levetiracetam) and Zonegran (Zonisamide).

    However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    Does this help at all?


    Comment by Phylis Feiner Johnson — October 16, 2014 @ 1:31 PM

  24. I LOVED Lamictal!! And I also do take Verapamil for the migraine prevention daily. I did not like the Depakote and that is why I was switched over to Lamictal by my one neurologist. But she was not a epileptologist and she was not comfortable treating me for epilepsy as I had just moved back to the area. So she sent me to my current doctor. And as soon as I got to the new doctor, and she went through everything, she put me straight on the Topamax. And even after a few months of all of this, and voicing my concerns she still insists that Topamax is best. But when I see her in 2 weeks, we are going to have to choose a different medicinal path, because, I honestly can not deal with the effects of this anymore. I forgot to mention, in the last post also, how I also have a short fuse, I sometimes snap at people, where, I normally would NEVER do something like that. I will write down the other medicines and ask about them. I for one can not afford to lose anymore weight for one. That is the biggest one right now for me. Also, my dosage for Topamax is only 150 mg, 2x daily, Verapamil SR 120 mg 1x daily.


    Comment by Erin T. — October 16, 2014 @ 2:08 PM

  25. Good for you! Stand up for yourself. After all, YOU’RE the patient.

    Here are some tips that might help with your next doctor visit:

    Be prepared

    Make sure you keep a daily seizure diary. Each time a seizure occurs, write down the time, the type of seizure it was and how long it lasted. Write down any major stresses or recent life changes that could trigger seizure activity. All of this can help your doc can get a better idea of what’s going on with you. Also, seek input from people who may observe your seizures — including family, friends and co-workers — so that you can record information you may not know.

    Bring along a family member or friend to help describe your seizures or to take notes during visits to your doctor. They can offer support and a second pair of ears. Sometimes it can be difficult to soak up all the information provided during your appointment. Plus, they may remember something that you missed or forgot. And a second set of ears along with someone else there taking notes, can be both comforting and invaluable after your visit.

    And let your doc know how you’re responding to your current medications. Be sure to share your concerns about any side effects, drug reactions, behavior changes, physical changes, trouble sleeping, loss of memory, or even brain fog. Accurate reporting will help you and your doctor make decisions together about a treatment plan that works for you. There are many good anti-seizure meds out there and if you don’t tolerate one, you and your doctor can try another to see if it works better.

    Come armed with questions

    Preparing a list of questions in advance will help you make the most of your time with your doctor. List your questions and the doctor’s answers from most important to least important in case time runs out.

    During your appointment, you may feel overwhelmed by the information or the doctor may be using medical mumbo jumbo terminology you don’t understand. He may even be going too fast. If this happens, you need to let the doctor know so that he can slow down, rephrase or even write notes or draw diagrams for you if necessary.

    Be persistent in asking your questions until you fully understand the explanation. If you don’t understand a diagnosis or treatment, ask more questions — take more notes.

    Make sure you understand the script and whether name brand or generic will make a difference to your condition. And make sure you know exactly what the doctor wants you to do before you leave the office.

    Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

    And if the doctor gives you the bum’s rush, or doesn’t respond to your questions, don’t hesitate to ask for a second opinion or else find another doctor who will work with you and care.

    Secrets to Better Care from Your Doctor



    Comment by Phylis Feiner Johnson — October 16, 2014 @ 2:35 PM

  26. My husband is always there with me whenever I see my doctor. He’s always been there for most of my seizures, so he is the one who explains to her what happens. I can only explain what happens right before, and what happens when I can finally remember when I come out of them. I unfortunately have tonic clonic, so I have no idea what happens once I am down. Luckily my husband does. And since this isn’t the first time I have seen my doctor she knows pretty much everything. And as much as I hate to say it, I am one of those patients that call her on the weekends, when I am having an aura, or I have had a seizure. I probably should start looking for a new doctor anyway, because trying to get an appointment with her is like trying to pull a thorn from a lions paw. She happens to be a doctor at a large teaching University Hospital here in Southern California as is my migraine specialist, but I have an easier time getting an appointment with her. I get a headache trying to get an appointment or getting in contact with my epilepsy doctor!! lol…


    Comment by Erin T. — October 16, 2014 @ 2:51 PM

  27. It takes me forever to see my neuro…unless I drive into the garage wall…

    But I’ve known him for 20 years, he saved my life 6 years ago, so the wait is worth it! 🙂


    Comment by Phylis Feiner Johnson — October 16, 2014 @ 3:47 PM

  28. I do like mine as well!! Except for her medicine choice!! Because when she does call me back when I have her paged she knows exactly who she is talking to, she never speaks to me like I am just a random patient in her office. She knows everything when she’s talking to me on the phone, she knows everything from all my other doctors in the same office and the same University. So, I think my best bet for now is to just be frank with her. And tell her once again, I do not like the medicine and how it makes me feel.


    Comment by Erin T. — October 16, 2014 @ 4:02 PM

  29. My daughter’s on 5 of these AEDs currently, been on many of the others previously, and unfortunately still isn’t controlled. She had a DBS implanted 8 years ago and that has completely rid her of going into status without any side effects, yet you don’t see much about DBS. She also had a VNS but scar tissue built up on the vagus nerve & prevented it from working. Most interested in getting rid of he drops & concurrent injuries, though she’s also had a serious injury from an absence seizure. Fortunately, she’s happy, lives on a special needs farm with friends & mentors. And we’re very thankful for the good things in her life and hopeful for improved control in the upcoming years.


    Comment by Valerie — January 17, 2015 @ 12:09 PM

  30. What I do know about the DBS is this:

    Deep Brain Stimulation

    (DBS) may offer a new treatment option for fighting epileptic seizures in those who don’t respond well to other therapies.

    Similar to the VNS, it’s minimally invasive and consists of implanting tiny electrodes in the brain that release electrical pulses, reducing the frequency of partial seizures and secondarily generalized seizures.

    It also has the ability to constantly analyze brain activity, then deliver the correct electrical stimulation.

    Overall, researchers say more than half of those treated experienced a reduction in seizures of at least 50%.

    Clinical studies have found that it is generally safe, with the adverse effects being transient and mild. However, one of the advantages of deep brain stimulation is that it can be switched off — if side-effects appear — and the entire procedure is reversible.

    Did the DBS work out for her? Or did it just abate the seizures.

    I’m fascinated to know.

    Also, the special needs farm sounds terrific. Tell me more…


    Comment by Phylis Feiner Johnson — January 17, 2015 @ 12:24 PM

  31. My son is on rufinamide which on your list it says it’s not approved in the USA. Is this correct? He also takes Trileptal, Vimpat and Onfi.


    Comment by Helena — October 3, 2015 @ 1:45 PM

  32. You’re right. Sorry!



    Comment by Phylis Feiner Johnson — October 3, 2015 @ 4:48 PM

  33. Within 2 weeks of taking Potiga I wanted to commit suicide. Also, above Aptiom is spelled incorrectly. It is Aptiom not Aption. Thank you. Melissa Bryan


    Comment by Melissa Bryan — October 3, 2015 @ 9:01 PM

  34. Wow Melissa. What med did you switch to?

    (That’s the second mistake I made on this article. Can I blame it on the drugs???)


    Comment by Phylis Feiner Johnson — October 4, 2015 @ 9:53 AM

  35. Medical marijuana/Charlotte’s Web/CBD oil is not listed. Do you/does anyone know of any side effects of medical marijuana/Charlotte’s Web/CBD oil?


    Comment by Chris Keller, MSN,RN — October 5, 2015 @ 3:44 PM

  36. Keppra also has s side effect of lengthing the blood coagulation time. Is mentioned in the inserts. I did call the pharmaceutical industry and told them. They took this very seriously and it is mentioned in the inserts. I am surprised you do not mention this. Apperantly I was the first patient in Israel who with a strong coagulation disorder was put on Keppra, but not high doses


    Comment by Frouke Goldberg — September 19, 2016 @ 12:01 PM

  37. Frouke, thanks for cluing me in. You’re right. I didn’t know this.


    Comment by Phylis Feiner Johnson — September 19, 2016 @ 1:10 PM

  38. So my 13 year old daughter has a history of epilepsy seizures and since jan 12 2017 she has been having seizures everyday she was just on keppra now she is on keppra topamax and clonazepam im worried because of the seizures everyday i have been doin some research on hemp oil and it looks like it would seem to help i just dont know how it would interact with the meds shes on now and how often i should give her the drops i would think a drop on bottom of the foot everyday so she wont go into a seizure so if anyone could help me i would greatly appreciate it im so confused but wanna try something it help my daughter out and get back to her normal life she so deserves it plz and thank you


    Comment by Nichole Rowe — February 1, 2017 @ 9:17 PM

  39. Sign me up


    Comment by Jennifer Rudisaile — October 12, 2017 @ 7:02 PM

    • Simply go to the box in the middle of the right hand column and click on “Sign Me Up”. Then add your email address.


      Comment by Phylis Feiner Johnson — October 13, 2017 @ 8:23 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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