Epilepsy Talk

Epilepsy Drug Side-Effects… | April 22, 2020

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 and addiction.

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. NOTE: Just recently the FDA put a black box warning on Perampanel, warning of severe psychiatric and behavioral reactions, including: aggression, hostility, irritability, anger, homicidal ideation and threats.

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 was on sodium valproate for more than 20 yrs, menstruation stopped without menopausal symptoms, no other reason found at the time, but they have now found that it affects female hormones so it must have been the cause, I gained weight, suffered hairloss with bald patches, been off it for 5yrs and thank goodness, it’s grown back, was on Tegretol for a few years and was virtually blind it affected my vision so badly, when I came off it my sight came back within a few weeks, gabapentin caused rapid weight gain, went up 2 dress sizes in6 months and made me dehydrated, so bad one day my throat closed, I nearly choked to death and was taken off it immediately. Why must we be poisoned to get some feeble control of seizures, I’d rather have the seizures

    Liked by 3 people

    Comment by Gail Barry — April 22, 2020 @ 1:02 PM

  2. Everyone should look into the ketogenic diet. (If you want to go full “crazy” like me, you can explore the carnivore diet.)
    As Gail said above, poisoning ourselves for some feeble and often fleeting control of seizures is not worth the long term damage to our bodies.
    I am currently on 250mgs of meds/day where I used to be on 1250mgs. I am 4/5ths of the way there with total seizure control.

    Liked by 2 people

    Comment by paleobird — April 22, 2020 @ 1:56 PM

  3. For those who don’t know about the Ketogenic diet, here’s it in a nutshell:

    The Ketogenic Diet — one of the oldest treatments for epilepsy.

    There are many people for whom epilepsy medications like Lamictal, Depakote, and Zarotin are ineffective in controlling or even reducing seizures.

    These drugs, especially in combination, can also cause unpredictable and serious side-effects.

    That’s why many people have turned to alternative therapies for seizure management.

    Because ketones seem to have an anti-convulsive effect, one of the most promising and least invasive alternative treatments for seizures has been the Ketogenic Diet.

    The diet is a high fat, adequate protein, low carbohydrate diet which works by fasting which in turn, creates ketones, which are by-products of the fat-burning metabolism that happens while fasting.

    And during this time, the body goes into a state known as ketosis— which has an anti-convulsant effect.

    Seizures often lessen or disappear during these periods of fasting.

    With careful and proper monitoring, the Ketogenic Diet has been found to reduce seizures in two-thirds, and eliminate seizures in one-third, of all people for whom anti-epileptic drugs are ineffective.

    And if it is successful, it’s usually continued for two years.

    During this time, people are often gradually able to lessen or discontinue the amount of medication they take for seizures.

    And interestingly, many people seem happier and more alert on the diet, even before medication is significantly lessened.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 22, 2020 @ 2:11 PM

    • WOW!!!!!!! You know it’s funny because I almost have to be CONSTANTLY REMINDED TO EAT!!!!! People don’t really know how to respond to me when I tell them “I’m not hungry” or “I really don’t like eating because of the STOMACHACHES!!!!!!!”. But yes I am pretty much a “CARNIVORE TYPW PERSON TOO” 😁😄😁😁😁

      Liked by 1 person

      Comment by Kathy S.B — April 27, 2020 @ 10:28 AM

  4. Epidiolex – drowsiness, loss of appetite, diarrhea

    Liked by 1 person

    Comment by Sue — April 22, 2020 @ 2:32 PM

  5. Wow!! Thank you for the information 😊

    Liked by 1 person

    Comment by Kathy S.B — April 22, 2020 @ 3:59 PM

  6. Now I know why I am constantly being asked “how much I drink?”. I’ve been on tegretol “extended release” since I was 13 years old and “Dilantin” since I was 7-8 years old and Clobazam for the past 10 years. These can also lead to “hyponatremia” or “low sodium, sugar and blood pressure” levels as well. In my case it also causes almost a “numbness or tingly” type feeling in my legs. Normally when it begins to bother my everyday life and nausea I know my sodium is getting low. For that I’m supposed to take an “electrolyte powder” in my drink. Or watch how much I drink a day. And YES!! I have had numerous dental surgeries where my gums have had to actually be cut off or down (that is VERY PAINFUL!!)

    Liked by 1 person

    Comment by Kathy S.B — April 22, 2020 @ 4:07 PM

    • I got galloping gum rot with Dilantin and my long, pretty hair fell out. I ended up cutting it into a bob (which is still how I wear it), to compensate for the thinness.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — April 22, 2020 @ 4:53 PM

      • Lol me too!! But I think for me the most upsetting part is “me or my husband don’t drink alcohol at all! And made it our job NOT TO DRINK ALCOHOL! In fact we still have our champagne from when we got married (25 legal years) July 29th of this year. Because we never wanted our children to care to drink or even use marijuana. So we had to live by our own standards and practice what we preached with our own children. 🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — April 22, 2020 @ 5:00 PM

      • Well, how disappointing to appear “drunk” when you haven’t even enjoyed a glass of wine. 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 22, 2020 @ 5:03 PM

      • Lmao 😂 EXACTLY!! Lol especially when I still have the bottle here and now 25 years later! Lmao 😂 😂😂😂😂💕💕

        Liked by 1 person

        Comment by Kathy S.B — April 22, 2020 @ 5:34 PM

      • Lol I’ve always had short hair. Of course it has to “naturally curly too”. My poor son almost had a heart attack the last time he was home!! I told him “the hairdresser better open DARN QUICK OR I WILL CUT MY OWN HAIR MYSELF!!!!!!! 😳💕”

        Liked by 1 person

        Comment by Kathy S.B — April 22, 2020 @ 5:37 PM

      • Things are getting ugly here. My bangs are like the iron curtain, my hair looks like a french poodle and I had to rip my fingernail gels off.

        Oh woe for the vain me!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 22, 2020 @ 5:41 PM

      • Lmao 😂 well I bought my dogs “long haired chihuahua’s” a hair trimmer a couple of months ago” 😆😆 and I pulled it out lastnight and set it up. I swear if you ever want your family BY YOUR SIDE 24/7 365 days a year DO NOT EVER BUY ONE!!!!!!! Lmao 😂 THEY WON’T EVEN LET ME OPEN IT NOW!! 🤣🤣

        Liked by 1 person

        Comment by Kathy S.B — April 22, 2020 @ 5:46 PM

      • Good decision — by THEM. You didn’t look bad on the phone the other night. 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 22, 2020 @ 5:56 PM

      • Normally my hair doesn’t pass my shoulders or even blow in my face. Lol plus I NEVER EVER WEAR MY HAIR UP in a pony tail!! 😂 I just have NO CHOICE NOW!! Lol 😂

        Liked by 2 people

        Comment by Kathy S.B — April 22, 2020 @ 6:02 PM

    • ***Kathy S.B,

      I need to cut in an “SOS Notice,” here. PLEASE STOP Taking the *Dilantin!
      Something you wrote: “In my case it also causes almost a ‘numbness or tingly’ type feeling in my legs. Normally when it begins to bother my everyday life–.”
      You are beginning to get symptoms of *Neuropathy, Kathy! I already have it. My last appointment to neurologist, he told me: “You have *Neuropathy. It comes from years of having taking *Dilantin.” I am in GREAT Pain, Kathy! I hurt from my back down to my feet, 24/7. My legs and feet are SO NUMB! I never know what time I might be able to get out of bed. Even if I’m going to walk! I am now on pain pills and using outside rubs. Except for today, I had up to FOUR *Lidocaine Patches applied on me three days in a row. You don’t want to know, “where.” And *The Numbness NEVER Leaves my feet!

      This doctor had eventually gotten me off of *Dilantin a few years ago, adding another pill. But I’d taken it AFTER Phenobarbitol was removed, along with with Mysoline. I’ve taken anti-seizure meds since age 4. Started on *Dilantin and *Mysoline (Now called *Primidone), at *Age 8. This was in The 1950’s! I just turned 69 on April 15, 2020. Please INSIST in getting OFF that drug! I know what it did to me. Thanks for reading. God Bless.

      Liked by 2 people

      Comment by Effie Erhardt — April 24, 2020 @ 10:30 PM

      • Thank you SO MUCH FOR INFORMING ME!!!!! This I will and can say “I GREATLY APPRECIATE YOU FOR INFORMING ME EFFIE!!” 🙏🏼🦅❤️. I’ve been trying on my own to get off of the Dilantin slowly. It is ABSOLUTELY AWFUL!! I agree about the numbness and tingling so I’ve have been and still am trying my hardest to get off of it!! Which was why I pushed so hard to get to a neurologist. And then we were blessed WITH OUR PANDEMIC and it’s made even going to the doctor virtually impossible!!!!!!! I keep wishing I could find MY MAGIC MEDICATION ASAP TOO!!!!! But I’m beginning to think that maybe awhile now. Thank you for reaching out to me and PLEASE TAKE CARE OF YOURSELF AND BE WELL MY FRIEND!! 🙏🏼🦅❤️

        Liked by 1 person

        Comment by Kathy S.B — April 24, 2020 @ 10:44 PM

      • Mysoline never changed its name, Primidone is just the generic, every medication has a brand and generic name. I refused to take Primodone when I was weaning off Clonazepam because it had so many of the same side effects, PLUS Catatonic Schizophrenia as a side effect. No THANK YOU.

        Liked by 1 person

        Comment by trekkie80sgirl — April 27, 2020 @ 2:45 PM

  7. My husband has diabetes and the one thing I noticed was “HIS DIET” is completely different than my diet!! In fact it was kind of funny when our family doctor told him “he had to allow me to have the fattier steaks and meat with salt (I use “Himalayan salt”) and for me to always have something sweet like a pop or chocolate bar with me at all times!!”. My epilepsy was made even more complex because apparently I was supposed to gain weight, but i seem to be losing it. But I did notice my eyesight also has changed. I’ve had 20/20 eye vision my whole life, but that also changed last year. Part of that was because I caught I was on “generic medications” when I’m not supposed to have generic medications due to the fact that I’m allergic to generic medications. I break out in hives and it feels like my stomach is killing me and my lungs are going to explode with nausea.

    Liked by 2 people

    Comment by Kathy S.B — April 22, 2020 @ 4:19 PM

    • I’ve never known that we “Have A Choice” between *Generic and “The Real Thing.” Whatever the doctors *or pharmacists give me, that’s it! They STILL get the money anyway. I’m just “The Human Guinea Pig.”

      If one ever finds that *Mysoline REALLY does still sell, I would like to know. For this “Free Country” we live in and as serious of a condition as epilepsy IS, it’s nothing for doctors or “Big Pharma” to be playing around with! I’ve been taking anti-seizure pills since 3 or 4 years old. If still alive, I will be *70 on April 15, 2021. I would have liked to having had *A Life instead of being all drugged up.

      Liked by 2 people

      Comment by Effie Erhardt — November 3, 2020 @ 10:54 PM

      • I completely agree with you

        Liked by 2 people

        Comment by Kathy S.B — November 3, 2020 @ 10:57 PM

      • I have an appointment with my neurologist, this month. I’m going to have some questions to ask. He made no comment last visit when *I spoke of *Tarragon to him, the last appointment. I thought that doctors like to be educated–unless it’s from one of their patients?

        Liked by 2 people

        Comment by Effie Erhardt — November 3, 2020 @ 11:04 PM

      • I went from waiting over a year to see an epitologist who only seen me for no more than 15 minutes only to be put on medications I was allergic to!! Then later on I realized (after a 2 months infection and I.V.Antibiotics) he never even TRUELY read my file at all!! I ended up being referred to a female neurologist who I only had to wait a few months to see and she was THE BEST IN THE WORLD!!!!! She still is and actually spoke with me and let me speak with her in a sincere fashion. There are VERY GOOD CARING NEUROLOGISTS AND EPITOLOGISTS OUT THERE!! It’s sad that there too few and far between!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — November 3, 2020 @ 11:12 PM

  8. Well, you know the story with generics. Bad news. 80% of them are the “original formula” while 20% is unknown “filler”.

    I presume it’s that unknown filler that you’re allergic to.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 22, 2020 @ 4:58 PM

  9. I have also enquired about the “VNS” or the other one the last time I was able to get to a neurologist. Instead he put me on “toperimate” and I ended up with an infection and on an intervenous for months and a lump on my leg which had to actually be cut open and drained with weeks of homecare afterwards. FYI I was very quickly taken off of toperimate after one weekend and it took a good month and half (half of which I really don’t remember) to kind of get back to normal. That’s when my family doctor referred me to a female neurologist (lol because apparently I’m supposed to be getting wiser now lol 😂) “life cycle” change 😊

    Liked by 1 person

    Comment by Kathy S.B — April 22, 2020 @ 5:07 PM

    • So, why wasn’t the VNS even considered?


      Comment by Phylis Feiner Johnson — April 22, 2020 @ 5:51 PM

      • The neurologist wanted to try the toperimate first!! When I told the neurologist “I’m allergic to generic medications” he shrugged me off and said “that only happens with some generic medication”. HE LIED!!!!!!! That’s when my family doctor said they were going to send me to a “female neurologist” who best suited my needs instead. Looks like I wait another year!!

        Liked by 2 people

        Comment by Kathy S.B — April 22, 2020 @ 6:01 PM

      • Another YEAR???

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 22, 2020 @ 7:59 PM

      • Well that’s how long I waited for the last one. So I’m assuming that’s probably going to be the same thing this time around again. I know it’s VERY AGGRAVATING!! But I have no choice, but to wait!!!!!

        Liked by 1 person

        Comment by Kathy S.B — April 22, 2020 @ 8:09 PM

  10. Should add Pancreatitis to Topiramate and Levetiracetam. I got it from both. Switched to Briviact Oral Solution and was trying Zonisamide Oral Solution until I got the runs, stopped it for now until May 1st, unless the allergist I plan on seeing on the 30th says otherwise.

    Liked by 2 people

    Comment by trekkie80sgirl — April 22, 2020 @ 9:01 PM

    • One more nail in the coffin.

      I’m so sorry to hear that Trekkie.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 22, 2020 @ 9:59 PM

    • They said my liver was being hurt from all the medications I’m on and for that long!! Which brought on the “hyponatremia”

      Liked by 1 person

      Comment by Kathy S.B — April 22, 2020 @ 10:53 PM

    • I was on toperimate (for ONE WEEKEND) and I swear I think I lost almost a month of painful memory in December 2019!! Plus I broke out in what they thought was a “spider bite” and was actually an infection the had to be cut open on my leg to drain with another month a a half of homecare and antibiotics (both I.V. And oral). As for Levetiracetam (generic for KEPPRA) I ABSOLUTELY REFUSED to take it!!!!! For me it was very personal but consisted of a really bad temper, impatience, and (due to so many family we’ve already lost to suicide) the suicidal tendencies scared the CRAP OUT OF ME!!!!! So I wasn’t even GOING TO MAKE AN ATTEMPT!!!!!!! I have yet to try BRIVIACT. I do find though that I TRUELY can not take ANYTHING GENERIC!! MY STOMACH WILL NOT LET ME AT ALL!!!!!!! My family doctor thinks it has something to do with the filler in generic medications. Pancreatitis I know my grandma had MAJOR PROBLEMS WITH HERS AS WELL!! I’m just not sure if they removed it or not on her (being the baby I was and still am to this day 28 years later VERY SHELTERED FROM KNOWING ANYTHING ABOUT HER HEALTH!!). That was her wishes so I just try to live by them now. Although I do know the also removed 5 inches of her small intestine and (I THINK) 10-14 inches of her long intestine due to “BLOCKAGES” and she was allergic to “CODIEN and AMOXICILLIN” as well. I seriously think she had “CHROANS”, but it’s never been confirmed with me.

      Liked by 1 person

      Comment by Kathy S.B — April 25, 2020 @ 10:20 AM

  11. I had stroke-like symptoms with Vimpat. Just tried Gabapentin for my headaches, but I had 3 seizures April 10th. I wound up at Froedtert overnight, glad I didn’t see my former neurologist when I was there. He nearly killed me when I was on Aptiom and others. I am dwindled down on meds and using liquids for the most part now.

    Liked by 2 people

    Comment by trekkie80sgirl — April 22, 2020 @ 9:05 PM

    • What kinds of liquids? Are they working for you?


      Comment by Phylis Feiner Johnson — April 22, 2020 @ 10:00 PM

      • Compounds/Suspension or Oral Solution versions of the medication. I get less side effects from using the liquid versions than the pills/capsules because of the fillers and colors of the pills/capsules. My Epileptologist’s office is starting to catch on that trying pills/capsules first usually winds me up in the ER. So the prescribed the Zonisamide Compound right away. My only problem with so many liquids is that I get diarrhea from having so many sugar alcohol bases (which certain sugar alcohols like Maltitol and Sorbitol can cause gas and other forms of digestive upset), so I had to adjust the dosage of my constipation medication and take lots of Psyllium husk powder. At least it’s an easy tweak to make.

        Liked by 2 people

        Comment by trekkie80sgirl — April 23, 2020 @ 10:36 AM

      • Do you think one of the epilepsy diets might help?

        Three Anti-Seizure Diets That Could Change Your Life…


        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 23, 2020 @ 10:46 AM

      • I actually have to take “liquid LACTULOSE” now too!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — April 25, 2020 @ 10:28 AM

    • I also ended up taking an electrolyte powder and Gatorade to help with the sodium levels

      Liked by 1 person

      Comment by Kathy S.B — April 22, 2020 @ 10:55 PM

      • What’s Lactulose Kathy? And I am already on Modified Atkins Diet.

        Liked by 2 people

        Comment by trekkie80sgirl — April 25, 2020 @ 2:39 PM

      • Lactulose is like Senokot, a laxative for occasional constipation relief.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 25, 2020 @ 4:05 PM

      • The doctor said it was to help the liver properly clean out the live. But it actually a “LAXATIVE SOLUTION” or “LACTULOSE”

        Liked by 1 person

        Comment by Kathy S.B — April 25, 2020 @ 10:29 PM

      • That’s something new, never really heard of it before. My Gastroenterologist gave me Linzess and originally told me to take Miralax too, but I haven’t really needed Miralax since I basically bombed my gut with a colonoscopy prep. Since then I haven’t been backed up like I was in February and my Briviact (tablets at the time) couldn’t be excreted so I got a lot of confusion because of Constipation. I have been having a lot more loose stools since then and been trying to bulk it up with Organic Psyllium Husk powder(and other fiber).

        Liked by 2 people

        Comment by trekkie80sgirl — April 26, 2020 @ 2:32 AM

      • Didn’t you recover from bombing out your gut?

        Are you eating now? What are you eating? (In terms of food.)

        What are your comfort foods?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 26, 2020 @ 10:38 AM

      • In all honesty it constantly feels like a race to cook supper around here!! Lol because my mother inlaw (who lives right next door) has to have more of a “low cholesterol, low sodium and low fat” diet. So we eat A LOT OF RABBIT FOOD WITH CARDBOARD MEAT and potatoes!! My son finally (VERY QUIETLY SAID “OH GOD MOM!!!!!!! PLEASE START COOKING SUPPER BEFORE GRANDMA DOES!!!!! BECAUSE WE (ESPECIALLY YOU) NEED FATTY MEAT ASAP!!!!!!!”) lol 😂. I’m the smallest one in my house now everyone is at least over 200 pounds and 6 feet and over or shorter than me but wider and still over 200 pounds!! Lol 😂)

        Liked by 1 person

        Comment by Kathy S.B — April 26, 2020 @ 11:21 AM

      • We eat salads every night. Many times, it’s salads with some protein in them, like chicken. Other times, it’s just different kinds of vegetables.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 26, 2020 @ 11:24 AM

      • I guess we’re a meat and potatoes and vegetable type family. We’ll have salads occasionally but we prefer to actually eat our vegetables washed, cleaned, cut and covered in the fridge for snacks 😊

        Liked by 1 person

        Comment by Kathy S.B — April 26, 2020 @ 11:28 AM

      • Sorry it’s to help clean out the toxins in the liver apparently. And ya that happened to me too when my stomach was “PURGED” I think it was last year or the year prior. OH MAN THAT WAS WORSE THAT HAVING A BABY!!!!!!!!!!! Ever since then i found in all honesty eating for me is a HUGE DEAL anymore. In fact I have to be reminded to eat!! For me it’s explaining the PAIN ON DIGESTION to people that almost makes me sound crazy sometimes!! So I just don’t eat if I don’t have too!! As for “gastrolyte” is an “electrolyte powder” I add to my coffee once a day. But the other HUGE THING THAT NEUROLOGIST ASKED IF I WAS ON WAS “IBPROPHEN”? I said I was but then the pharmacist said they didn’t and won’t have it until this year in May maybe. Apparently that’s supposed to help with the swelling of my brain or something I DON’T KNOW!! Lol sometimes even I THINK I SHOULD JUST HAVE GONE INTO MEDICAL SCHOOL!! Lol

        Liked by 1 person

        Comment by Kathy S.B — April 26, 2020 @ 11:11 AM

      • There was an “gastro enterologist” who tried to put me on a laxative but it backfired because it was depleting my body of my medications and caused me to have seizures. So it was changed to “gastrolyte” and “lactulose”.

        Liked by 1 person

        Comment by Kathy S.B — April 26, 2020 @ 11:14 AM

    • I AGREE!!!!! As funny as it sounds I have to be REMINDED TO EAT NOW!!!!! I really don’t like eating DUE TO THE PAIN OF DIGESTION!!!!!!!thats why I REALLY WISH NEUROLOGISTS, EPITOLOGISTS, NURSES AND POLICE OFFICERS would have the COURAGE TO SPEAK WITH ALL OF US FACE TO FACE AND HEAR EVERYTHING FROM THE “HORSES MOUTHS” BEFORE THEY TRY TO PASS ANY FORM OF JUDGEMENT UPON US IN THE PUBLIC EYE OR EVEN TO OUR FAMILIES!!!!!!! It never hurts to hear the other side of the story before they pass judgement themselves because they never know about themselves either. Who knows? Then they will need us 🙏🏼🦅💕😘

      Liked by 1 person

      Comment by Kathy S.B — April 25, 2020 @ 10:26 AM

  12. MANY TO ALL AED’s, as any other drug on the market has some form of CELLULOSE in them. In 2000 I started with LAMICTAL & took the generic to start, all to find in 2 weeks or less it was not going to work, so it’s the brand name, and it is not much different. This damaging cellulose/s will give you a tart or tangy taste in your mouth & when you have an open mouth while sleeping, it’s like BANG !!!! you taste that, & you get no sleep because also lamictal & CELLULOSE causes INSOMNIA, which is a popular side effect in every AED on the market. Give me back my BARBITUATES without the cellulose, and we wonder why these newer AED’s are worthless where LESS SLEEP DO CAUSE MORE SEIZURES, & less brain cells being formed when the brain CAN NOT REST DUE TO INSOMNIA FROM AED’s we are taking that have cellulose/s in them. Of course all AED’s come from CHINA.

    Liked by 2 people

    Comment by James D — April 22, 2020 @ 9:10 PM

    • Lol funny how people (without epilepsy) then complain about having “CELLULOSE” in parts of their anatomy THEY WISH THEY CAN GET RID OF AND WE HAVE TO TAKE THEM!! 😂

      Liked by 1 person

      Comment by Kathy S.B — April 25, 2020 @ 10:31 AM

      • But not because we want to. It’s just inherent in the meds we take.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 25, 2020 @ 10:36 AM

      • Yes that are given to us by medical professionals. Who maybe should talk with all the people the are supposed to help. It is after all a “team effort” 💕

        Liked by 1 person

        Comment by Kathy S.B — April 25, 2020 @ 10:49 AM

  13. James I never knew that about cellulose. But I do know that, in the beginning, Lamictal make me crazy/hyper.

    When I adjusted my evening dose from bedtime to 6:00 PM, all was fine.

    And I’ve been 99% seizure-free for 10+ years.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 22, 2020 @ 10:04 PM

  14. so, amidst all these hideous side-effects, one is also trying to lead a “normal” life ie: friends, family, jobs, etc. the tremors (are you a drug addict?) the weight gain, loss, hair falling out (a psych problem ), and on and on. But you can’t tell anyone because then, the secret is out and all sh*t hits the fan, doesn’t it? Can’t win for losing.

    Liked by 2 people

    Comment by skolly9 — April 23, 2020 @ 9:01 PM


    Liked by 1 person

    Comment by Kathy S.B — April 25, 2020 @ 10:35 AM

    • I don’t think that “drug addicts” are what we are. Even though we’re drug dependent.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 25, 2020 @ 10:39 AM

      • Neither do I!!!!!!! Especially when it none of our fault. Sometimes I think the “ARROGANT IGNORANCE” of wanting to have to finally talk with all of us “as epileptics” hurts their “EGOS” and they get scared to speak with us in a “humanistic compassionate” way can cause “the professionals” to be embarrassed and humiliated. Therefore they would rather continue on without actually speaking to the people they treat with such disrespect and disregard because then it may “humble” them and they “MIGHT JUST LISTEN AND LEARN FROM US” then. I certainly do not like my husband or children being asked “what kind of drugs is she taking? Or how much does she drink?”. My poor husband, children, and friends sure don’t deserve to feel the way their made to feel either. They hear the doctors, nurses, emt’s, and police talk about us (if we have a seizure and can’t defend ourselves in public) and are often left feeling hurt and VERY UPSET once all is said and over. Or our family and friends JUST NIAVLY BELIEVE THE DOCTOR’S, NURSES AND POLICE AND EMT’S!! Too bad people can’t bring themselves to actually want to try and listen and learn from those of us who are epileptics. We’re a “SPECIAL BREED” we (and sometimes our spouses and children) deserve to be treated with dignity as well and heard too. I’ve never ingested or taken “ILLEGAL DRUGS” lol or even drink “ALCOHOL”!! I only take what the doctor makes me take. We simply have no choice but to humble ourselves to the mercy of the professionals. Maybe the medical professionals should do the same for us and our loved ones as well. It take a lot of courage to be able to listen and learn and then ask questions later. That maybe something they might want to learn and practice too instead of labelling us first. We’re ALL HUMAN TOO just like them. In fact some of us have ran into those fires before them or helped them gain knowledge about “epileptics”. It never hurts to come off their pedestals and treat us as human not what they (VERY QUICKLY) think we are when we have a seizure anywhere. I am very proud of all of us “epileptics” and am always willing to “listen and learn” and if possible “teach and speak up”. But I have yet to see a neurologist, doctor, nurse, police officer or EMT in any of our “EPILEPTIC FORUMS”!! Until of course it’s themselves or loved ones. That’s too bad.

        Liked by 1 person

        Comment by Kathy S.B — April 25, 2020 @ 11:11 AM

  16. One thing to remember is everybody reacts differently. I was started on Phenobarbital in 1981, in 1982 they added Tegretol. I’ve spoken with others who could not tolerate teg. As a kid i was on 1400-1600 a day most of the time. I was up to 2200/day in my early 20’s, Meanwhile I know of others who had problems at 600/day.

    Keppra I was up to 5000mg/day. Max suggested dose is 3000. I only had a reaction the first time they tried bumping me to 4000.

    One of the drugs I couldn’t reach suggested dose when starting (Zonegran) and suffered substantial weight loss and toxicity of another drug (Phenytoin) because of weight loss. Levels were in the low 30’s if I remember right (10-20 is the range!).

    Liked by 2 people

    Comment by Travis — April 25, 2020 @ 11:01 AM

    • Yes I was told I’m toxic too!! I’m on 1600mgs of tegretol Cr, 400mgs Dilantin, and 10mgs of Clobazam as well. But I cut the tegretol down to 1200mgs, Dilantin 300, and clobazam 5mgs now.

      Liked by 1 person

      Comment by Kathy S.B — April 26, 2020 @ 11:24 AM

  17. Travis, did you turn toxic? What was the result?

    Did they even bother doing blood work?


    Comment by Phylis Feiner Johnson — April 25, 2020 @ 11:31 AM


    Liked by 1 person

    Comment by Kathy S.B — April 25, 2020 @ 9:13 PM

    • Nope. I’m just a writer and I like it like that! 🙂

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 25, 2020 @ 9:59 PM

      • Yes it’s ALWAY nice to be able to have the intelligence to be able to be a writer 😊. But even doctors have to read 😘

        Liked by 1 person

        Comment by Kathy S.B — April 26, 2020 @ 12:25 AM

  19. The medical doctor sure could use your intelligence Phylis 😘

    Liked by 1 person

    Comment by Kathy S.B — April 26, 2020 @ 11:25 AM

  20. It’s perhaps cynical of me, but the term “side effects” often seems to mean, “we do not want to talk about what you are experiencing.”

    If you have, say, headaches, and the medication while lessening the headaches also causes your fingernails to turn blue, then you are not to complain, or even mention it, because the primary intention was carried out.

    To me, everything that happens after I begin a medication is an effect, period. An effect of some eye drops is constipation. A possible effect of a salve for fasciitis pain is death. How can this be a “side” effect? And where to draw the line?

    NB: the salve remains unopened, I go with the pain.

    Liked by 1 person

    Comment by HoDo — April 27, 2020 @ 3:29 PM

  21. I see what you saying: every cause has an effect. Not just a side effect.

    And yes, side effects can be multiple. (To say the least.)

    So pinning them down is very difficult. It could be this and/or, it could be that.


    Comment by Phylis Feiner Johnson — April 27, 2020 @ 4:33 PM

  22. […] Epilepsy Drug Side-Effects… — Epilepsy Talk […]


    Pingback by Epilepsy Drug Side-Effects… — Epilepsy Talk – CLINIQUE PHARMA — April 29, 2020 @ 11:17 PM

  23. Please add “addiction” to Ativan. Benzodiazepines are highly addictive.

    Liked by 1 person

    Comment by HoDo — June 26, 2020 @ 4:44 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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