Epilepsy Talk

Epilepsy Drug Side-Effects | September 23, 2018

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. 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 diagnosed years ago with ADHD and was prescribed Ritalin at the time. I went off it a few years later because of the side affect. Three years ago I was diagnosed with absence seizure epilepsy. A couple of years ago I had heart failure and had a valve replaced in my heart. I also have constant numerous facial and body tics. Unfortunately I cannot take any of these medications because of their interactions with my epilepsy medication (Lamictal), which also has numerous side effects. I’ve tried the Keto diet, hoping that would lessen the severity of the tics, but that didn’t help either. I would like to know if there is anyone else that has ADHD, Epilepsy and severe tics and how have they learned to cope with them.


    Comment by Duane Loftus — September 23, 2018 @ 10:36 AM

    • I don’t know of anyone and no one has mentioned it yet.

      For what it’s worth: Tic Disorders and ADHD.

      Approximately half of the people with tics also have ADHD.

      Research has found that chronic tic disorders, Tourette syndrome, and obsessive-compulsive disorder may have similar neurological origins, and an individual with any of these conditions is also quite likely to have ADHD.

      In addition, tics can be a side effect of taking ADHD medications, such as methylphenidate (Ritalin) and the mixed amphetamine salts (Adderall).

      In many instances, these tics go away after the medication is discontinued.


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 10:50 AM

  2. How does one report side effects that are not listed? While I was on high doseage of Vimpat and Keppra my fingernails were detaching and I had breast discharge. Breast docs were concerned had many test but when I stopped those meds the discharge went away and my nails are growing correctly now. I also now have curly hair, I like that side effect tho.

    Liked by 1 person

    Comment by Marie — September 23, 2018 @ 10:39 AM

    • I’ve never heard of those side-effects in my research.

      I guess yours are rare ones.

      But, I’m glad you found a happy solution and these side-effects went away.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 23, 2018 @ 11:02 AM

  3. Thanks, Phyllis. However, significantly absent from this list is CBD (Cannabidiol). Not enough data available yet?


    Comment by Martha — September 23, 2018 @ 11:55 AM

    • It’s so controversial, I prefer not to take a stance. (Whimpy me!)


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 12:29 PM

      • You know for the first time in my life I’m actually thinking about cbd!! I can’t believe it myself!!

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 9:42 AM

  4. After using Neurontin for a long time, side affect almost killed me. Scarring, includinf a keloid that hung an inch down from a pierced ear. The skull thickened/grew in, squeezing the brain, causing sudden ‘drop to the floor’ headaches. Broke 3 drills, during corrective surgery, so ended with cutting off top of skull and replacing with titanium to keep me alive. (All scaring at left side of head, and right side of body, was also affected)


    Comment by LauraleeA — September 23, 2018 @ 12:04 PM

    • That sounds awful.

      My husband used Neurontin for neuropathy and it simply didn’t work.

      So, fortunately, he went off it in a relatively short time.

      I’m sorry you went through such hell. 😦


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 12:25 PM

  5. Thanks for this important information Phylis! Do you mind if I share it? Of course, I will credit you. 😊

    Liked by 1 person

    Comment by Soo Ihm — September 23, 2018 @ 12:26 PM

  6. Yes, that’s fine.


    Comment by Phylis Feiner Johnson — September 23, 2018 @ 12:28 PM

  7. Hiya, thanks for a fantastic website, I’m over here in the UK and just wanted to say thanks

    Don’t forget to add addiction to Perampanel (fycompa) — the epilepsy nurse thought that I was crazy ( maybe I am Lol ) but I know that I just wanted to take more and more of it, got so high taking it , had to get off it.


    Liked by 1 person

    Comment by Mark — September 23, 2018 @ 1:59 PM

    • Wow, Mark. That’s a new one on me!

      Maybe that goes under “mood and behavior changes”? 🙂


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 2:49 PM

      • I think that the FDA is it over there put a warning on the drug ?


        Comment by Mark — September 23, 2018 @ 3:40 PM

      • Right you are.

        Just recently the FDA put a black box warning on Perampanel warning of Severe Psychiatric and Behavioral Rxns including: aggression, hostility, irritability, anger, homicidal ideation and threats reported; seen in patients without previous psychiatric disorders.



        Comment by Phylis Feiner Johnson — September 23, 2018 @ 5:03 PM

      • The drug label has a black box warning that the drug cause may cause serious psychiatric and behavioral changes; it may cause homicidal or suicidal thoughts and is designated as a Schedule III controlled substance by the Drug Enforcement Administration, not sure what that means in the US

        Liked by 1 person

        Comment by Mark — September 23, 2018 @ 3:48 PM

  8. Most of these drugs listed has always caused some type of side affect, mainly because I TOOK TOO MUCH OF IT, instead of taking the right amount that I needed. Too much LAMICTAL made me have insomnia & SJS rash, plus cracked skin on my fingers. Too much TEGRETOL for me caused more problems with RAPID HEART BEAT at 250 Xs a minute, and 30 to 60 seizures in 2 days when taking 600 to 800 mgs of it. Also I had more anxiety & worry with more side affects with ALL the drugs I took too much of. I also have had more side affects with other drugs, but nothing as bad as those 2 of LAMICTAL & TEGRETOL, that today I now only take the XR Brand name of LAMICTAL 100mgs a day only & take it 1 time in the AM. If I took more of the XR LAMICTAL or any AED, it would be the SOS as far as Side Affects, & maybe worse around the clock if the drug works more evenly every 24/7. A suggestion that I have not really lerned much from any neurologist is WHAT AED is good for WHAT TYPE of seizure condition, that will help increase GABA & DOPAMINE in the brain, while maybe lowering or to keep a lower rate of GLUTAMATE & other EXCITITORY receptors & neurons from getting fired up by other chemicals of MSG’s & ASPARTAME’s in the foods & AED’s that WE CAN BE eating & take daily. SUGAR & GOOD FATS for these reasons are NOT bad to have any limited amounts of based on how much MSG & ASPARTAME one may have daily in their diet 365 days a year. Eliminating SUGAR for ASPARTAME will only ADD ON more seizures for over 85% of us. Eliminate BOTH Aspartame’s & MSG’s will lower seizure activities daily.

    Liked by 2 people

    Comment by CD — September 23, 2018 @ 2:18 PM

  9. I switched from Keppra ER to Briviact to cut down side effects and am happy with it. A downside is expense as it is new and not yet In a generic form.


    Comment by Kate — September 23, 2018 @ 4:25 PM

    • That’s a tough one. But I guess you have no choice.

      I’d say abating seizures is worth its weight in gold.

      And I’m sure you agree. 🙂

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 23, 2018 @ 5:07 PM

  10. I think the major problem is all the AEDs have the potential for serious psychiatric side effects, which they knew about back in the days of the 1st generation drugs (phenobarb, dilantin depakote etc) but it took years before black box warnings got added. Even now the risk is greatly downplayed or even ignored by a lot of neurologists, and when it does happen, instead of a meds change, the poor patient is given a psych diagnosis and loaded up on psych drugs instead!

    How many of us have ended up with AED-induced depression, mood disorders, even psychosis and hopitalization that’s obviously coincided with starting a particular AED, but that connection has been ignored because seizure control is considered way more important than severe mental symptoms? (Yes, it happened to me, phenobarb in the 1980s. They knew about what it could do to teenagers mentally even back then). because of that there are certain AEDs I refuse to even go near as the risk is so high of something similar happening. Thank goodness lamictal was invented.

    Liked by 2 people

    Comment by Katie — September 23, 2018 @ 6:23 PM

    • Katie, I’m right there with you.

      I was on Dilantin in the 60’s and I was positively suicidal.

      It didn’t help that I went into a coma because I became toxic.

      I figured it was better to die in life than to live in death.

      Does that make any sense?

      (And yes, I’ve been on Lamictal with no side effects and 99% seizure-free for 10+ years.)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 23, 2018 @ 9:53 PM

    • I can’t agree with you more!! I think that maybe a huge reason why even I don’t want to change my medication anymore!! Oddly I am on tegretol, Dilantin, and clobazam

      Liked by 1 person

      Comment by Kathy S.B — December 18, 2019 @ 9:49 AM

      • The problem or issue I’m having seems to be the issue of low sodium chloride and what almost feels as though some professionals who have no idea what medication does to a person and how fast the medications can become addictive as well!! I was in so much pain (worse than having a baby) on the new medication I was currently changed too!! I took it for 2 days and took it back!! The only positive to the ordeal was I could feel again in my legs, but the negatives were I thought I was going crazy and my head was going to IMPLODE!!!!!!! As awful as it sounds that is the first time in my life I ever came to discover why people become addicted to drugs and possibly why they all go crazy just to be able to get rid of a little bit of pain or numbness. 5 days later I am still feeling it!!!!! I WILL NEVER EVER FORGET IT!!!!!!! As for marijuana I came to discover ever retired NHL’ers are now making a marijuana electrolyte drink for those who have issues due to concussions!! Lol 😂 yet Canada truly does not have any regulated marijuana medication for epileptics either and the United States does!! Seems to me our neurologists are too happy to do neurological surgery on us first and then put us on pills they would never take nor wish upon their worst enemy!!!!! That’s too bad, we can all learn from one another if all learned to work together. Thank you and please have a very good day today and please take care of yourselves 😊

        Liked by 1 person

        Comment by Kathy S.B — December 20, 2019 @ 11:31 AM

      • Pain definitely changes people. Even their personality.

        My father was a loving dad until he was in severe chronic pain.

        Then he became a bastard.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 20, 2019 @ 11:36 AM

      • I’ve NEVER FELT as though I just wanted to get run over by train instead of going through all of that pain in my whole life!!!!! But it sure opened my eyes as to why there’s such a MAJOR PROBLEM WITH ILLEGAL DRUGS!!!!! They should try that stuff before they give it to us to take for the rest of our lives!! Shucks I wasn’t close to that kind of pain with a broken sternum in the summer or during childbirth!! Then to be asked “if I feel I should be hospitalized until I got adjusted made me even more upset!!”. Odd how I could break a sternum and not be able to handle my head feeling as though it was going to implode because of medication I was supposed to take WAY MORE OF TOO!!!!! Then being asked about the hospitalization after all of that!!!!!!! HECK WITH THAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — December 20, 2019 @ 11:50 AM

      • It sounds like someone was passing the buck in terms of responsibility for the meds.

        You’re only hospitalized in a dire situation where if your drugs fail, you’re in danger.

        Trust me, I’ve been there. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 20, 2019 @ 3:14 PM


        Liked by 1 person

        Comment by Kathy S.B — December 20, 2019 @ 3:24 PM

  11. Sorry, hallucinations are not a side effect of Dilantin. You’re giving ammunition to the ignorant Human Resources and Law Enforcement professionals who believe epilepsy is a mental illness. Good try.

    In Summary
    Common side effects of Dilantin include: congenital anomalies. Other side effects include: hepatic necrosis, ataxia, confusion, constipation, depression, dizziness, drowsiness, fatigue, hypertrichosis, mental status changes, myasthenia, nervousness, numbness, tremor, tremor of hands, vertigo, excitement, irritability, mood changes, and restlessness. See below for a comprehensive list of adverse effects.

    For the Consumer
    Applies to phenytoin: oral capsule, oral capsule extended release, oral suspension, oral tablet chewable

    Other dosage forms:

    injection solution
    Along with its needed effects, phenytoin (the active ingredient contained in Dilantin) may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

    Check with your doctor immediately if any of the following side effects occur while taking phenytoin:

    More Common
    Decreased coordination
    mental confusion
    slurred speech
    trouble with breathing, speaking, or swallowing
    unsteadiness, trembling, or other problems with muscle control or coordination
    Inability to move the eyes
    increased blinking or spasms of the eyelid
    shakiness and unsteady walk shakiness in the legs, arms, hands, or feet
    sticking out of the tongue
    trembling or shaking of the hands or feet
    twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
    uncontrolled twisting movements of the neck, trunk, arms, or legs
    unusual facial expressions
    Incidence Not Known
    Abdominal or stomach pain
    bleeding gums
    blistering, peeling, or loosening of the skin
    blisters, hives, or itching
    bloating of the abdomen or stomach
    blood in the urine or stools
    bloody, black, or tarry stools
    chest pain
    cough or hoarseness
    dark urine
    difficulty with moving
    fainting spells
    fever with or without chills
    general feeling of discomfort or illness
    general feeling of tiredness or weakness
    hair loss
    high fever
    irregular heartbeat
    irritation in the mouth
    joint or muscle pain
    light-colored stools
    lower back or side pain
    muscle stiffness
    nausea or vomiting
    numbness, tingling, or pain in the hands or feet
    painful or difficult urination
    pale skin
    pinpoint red spots on the skin
    red skin lesions, often with a purple center
    red, irritated eyes
    redness and swelling of the gums
    skin blisters
    skin rash
    sore throat
    sores, ulcers, or white spots on the lips or in the mouth
    swollen, painful, or tender lymph glands in the neck, armpit, or groin
    unusual bleeding or bruising
    unusual tiredness
    upper right abdominal or stomach pain
    weight loss
    yellow eyes or skin


    Comment by Susan Vander Veer — September 23, 2018 @ 7:50 PM

  12. Thanks for your research Susan. (Drugs.com is my #1 go-to resource!)

    Happily, I did not hallucinate on Dilantin. I was just a walking, talking zombie. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 23, 2018 @ 9:55 PM

  13. I’ve had lots of side effects of many medications. When I started out trying brand name Keppra I had my legs fall out from under me even though I was on a low dose. I had no problems with the generic pill until a previous neurologist tried increasing it to the “normal” level and I had breathing and itching problems(I am on a liquid version currently). Vimpat gave me stroke-like symptoms as I couldn’t move ANY of my muscles, not even my tongue(it took the whole day to get my muscles back). Aptiom recently was a total nightmare (literally) interacted with all the other pills/capsules I was on back in 2016(I couldn’t even get my doctor at the time to pay attention to my side effects, until I went to the local ER they ignored the fact shortness of breath and heart palpitations were listed as an allergic reaction. I also had trouble staying asleep and vivid nightmares early on in the dosing at night, I even attempted suicide on Aptiom, which I did have the thoughts before in 2013, but never really had a way to do it because I wasin a different room at that time. I found out I was allergic to inactive ingredients in pills I was on, and more than likely for the reason why I have had so many side effects in the past too. I switched 2 of my prescriptions to liquids (Levetiracetam and Topiramate). I have recently had Raynaud’s phenomena from Topiramate, it’s listed as a rare cardiovascular side effect on drugs.com. I also got diagnosed with Anxiety in February, probably a combination of Topiramate compound & Levetiracetam Oral Solution plus emotional abuse(definitely not a good combination). I have had rashes a lot more recently too. I had problems with Benzodiazepine Withdrawal when I got off Clonazepam daily, before my Functional Medicine aunt took over. I have been off the Clonazepam completely since early December 2017. I used to use Lorazepam and Diastat for emergencies too. I was given Primidone to help manage the side effects of Clonazepam, but I was told if my aunt took over I didn’t need to take it(I was afraid to anyways because besides having similar side effects of Clonazepam, it listed Catatonic Schizophrenia as a possible side effect-I didn’t want to take a chance). I was on Lyrica too, but was taken off it during a VEEG in November 2016.

    Liked by 1 person

    Comment by trekkie80sgirl — September 23, 2018 @ 11:50 PM

    • Who was this doozie of a doctor?

      I know you mentioned your aunt before. Are you doing anything special with her?

      Have you considered:

      Vagus Nerve Stimulation…Is it for YOU?



      Move Over VNS…There’s A New Guy in Town!



      Comment by Phylis Feiner Johnson — September 24, 2018 @ 11:33 AM

      • The one that tried to overmedicate me was Dr. Chad Carlson up at Froedtert & Medical College of Wisconsin. I have had a VNS since 2004 with 2 battery replacements in 2007 and 2013. I had surgeries in 2008-09. I do SCENAR treatment with my aunt and she’s in charge of my whole food supplements, and helped wean me off the Clonazepam when the neurophysiologist (Dr. Amit Ray) tried to take me off too quickly. I am seeing an Epileptologist in the same system as the neurophysiologist, but she’s up in Milwaukee instead of closer to me. The neurophysiologist’s office gave my primary a hard time about getting a new referral for my headaches. The doctor himself was willing to see me though.


        Comment by trekkie80sgirl — September 25, 2018 @ 1:23 PM

      • Have you parted ways with the neurophysiologist?

        Could you tell me what SCENAR treatments involve?

        What are you doing about your headaches? (Some people report relief with Botox injections.)


        Comment by Phylis Feiner Johnson — September 25, 2018 @ 4:45 PM

      • I did like the neurophysiologist, but because his staff gave me and my primary a hard time she sent me to an Epileptologist up in Milwaukee at Aurora St. Luke’s. One of the Walk-in doctors I saw about the headaches before I met the Epileptologist on August 15th also said she was great. I went for a Consult on the 15th, but she will see me about the headaches in November. I have been taking some homeopathic migraine remedy until then, along with using some T-Relief gel and Arnica Montana pellets. I tried propranolol and the Walk-in doctor gave me some Naproxen for a while, but the propranolol just migrated the headaches and I believe the Naproxen is what caused my mysterious bruises for awhile. My primary upped my Topiramate compound/liquid again before I met the Epileptologist, but I have not had any relief. The tinnitus has increased in intensity with the increase again too(I was down to 2.5mL and 3.5mL, before we brought it up to 5mL and 7mL).


        Comment by trekkie80sgirl — September 26, 2018 @ 11:21 PM

      • Well, I’m glad you’re situated with a better medical team, but sad that it’s taking so long to come together.


        Comment by Phylis Feiner Johnson — September 27, 2018 @ 10:20 AM

      • SCENAR is a biofeedback device. It’s helped people with things like Depression and even Severe Parkinson’s too.

        Liked by 1 person

        Comment by trekkie80sgirl — September 29, 2018 @ 7:07 PM

      • Thanks Trekkie!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 29, 2018 @ 8:26 PM

  14. PERFECT ON TIME PHYLIS,,, When I desperately needed to find out WHY,
    – my eye vision is going BLERRY, even the street & car lights feel blasting sharp to directly see/watch & yet still blerry to focus & figure out on the exact shape of the sight,
    – my head feels like it’s not stationary anymore as if my head alone is moving forward, backward, right or left (dizzy, disorientation) everytime I get up from bed,
    – when I can NOT exactly remember when & where I put my staff or even the date of the week (memory, confusion),,,
    Furthermore, I suspect & believe that my hallucinating, disorienting, chest pounding, suffocating & profusely sweating PETITE MAL SEIZURES may have to do with the side effect of my seizure medications than with anything else.
    (Infact I met one family, whose son ended up having psychological disorder from the side effect of seizure medications).

    – But all these time, I never connected my conditions to the side effect of my seizure medications, twice-daily combinations of Keppra & Dilantin, beyond presuming AGING (60), must have a lot to do with my current conditions.
    Now I can figure out that my conditions are more related to side effects of my prescription medications, I may need to try other options, alternative medications to minimize the difficulty of the side effects of my seizure medications.
    Now comes another nightmare, overcoming the bureaucratic war, tracking & providing the medical insurance establishments CONSTANT REQUEST for records, files & documents proving your eligibility for Medical & Financial coverage to see your Neurologist & cover the cost of alternative prescriptions.
    And visiting an Eye Doctor for prescription glass to cure my blurry vision is going to be another insurance war.
    Then again, I’ve been there before & beat the odds.

    Phylis, As always, thank you for your tireless hardwork providing informative education to the Epilepsy community, for many of us have learned to cope with epilepsy from you, more than from the medical establishments.
    KEEP THE LIGHT ON, for many need you!

    Liked by 2 people

    Comment by BahreNegash Eritrea — September 24, 2018 @ 3:54 PM

    • Thanks Gerry. May the light keep shining for you as you overcome the disabilities of your meds.

      I know it’s expensive and all those appointments and paperwork are a pain.

      But isn’t it good that this problem can be “fixed”? 🙂


      Comment by Phylis Feiner Johnson — September 24, 2018 @ 4:55 PM

      • Yes Phylis, Thanks God the bureaucratic hassle can be fixed & that’s something to celebrate.

        Liked by 1 person

        Comment by BahreNegash Eritrea — September 25, 2018 @ 6:04 AM

      • Ironic to note that I’m replying to this post from Ophthalmologist’s office, hoping that the Eye Doctor will help me find the right prescription glasses for my blurry vision which has been triggering my seizures.
        But last time I was sitting on the same chaire having an eye exam 4 years ago, I ended up having grandmal seizure from the very mechanical instruments used to carry out my eye exam to only wake up totally confused & disoriented in hospital emergency room.
        This time around, I hope to have the eye exam without having a seizure for I know I need prescription glass to correct my blurry vision & I just can’t keep postponing the eye exam because of the last experience I encountered in the Ophthalmologist office, 4yrs ago.
        I just can’t wait to get over this haunting drama.

        Liked by 1 person

        Comment by BahreNegash Eritrea — December 18, 2019 @ 9:48 PM

      • Goodmorning 😊. Oddly what helped me get through the eye exams was ativan or lorazepam!! I took before I went into the clinic and that helped me to be able to get through they eye appointment. Just a thought 😊 please have a very good day today and please take care of yourself 😘🙏🏼🦅😇❤️

        Liked by 1 person

        Comment by Kathy S.B — December 19, 2019 @ 12:15 PM

    • I’m SO SORRY TO HEAR ABOUT YOUR ISSUES WITH MEDICATIONS AND HEALTH GERRIE!!!!!!! I paid a visit to my pharmacist today and actually had a chance to sit with him and go over everything with him!!!!! I tell it never felt so good or I never felt so relieved to give a bag of medication BACK TO HIM IN MY WHOLE LIFE!!!!!!! He’s going to contact my neurologist and family doctor and they’ll figure something out all together. BUT ONE THING I DID LEARN!!!!!!! The medications that are given to us epileptics now are VERY VERY SCARY TO HAVE!!!!! I only took the toperimate 25mgs for 2 days and all I did was sleep! My husband had to wake me up to go to the emergency department (for an infection) on both days and I swear that’s the VERY FIRST TIME I EVER CRIED OUT IN PAIN!!!!!!! I ended up stopping the medication until today when I sat with my pharmacist and finally gave all that medication back to him!!!!! Oh thank god for best friends!!!!!!! If my best friend wasn’t with me I swear even my pharmacist would have thought I was mentally crazy!!!!!!! My response was I’ve never taken drugs in my whole life (except what I have to for epilepsy) but I would rather be all numb and have that CRAP THE HECK OUT OF MY HOUSE!!!!!!! I so FEEL YOUR PAIN!!!!!!! Please take care of yourself!! 😘😊🦅😇💞

      Liked by 1 person

      Comment by Kathy S.B — December 18, 2019 @ 7:14 PM

      • Hi Kathy, Thank you for your caring concern to my ordeals.
        I’m sorry of what you’ve been through.
        Yes, I agree with you that the side effects of our medications are becoming more difficult to bear, while we continue to search for remedy to our epileptic seizures.
        At times, it seems difficult to tell if the medications are worthy of ALL the troubles we have to endure than the epileptic seizures we got to live with.
        And I agree with you, thanks to the loving family members & good friends who stood by our side when we need them the most, we managed to survive this far, avoiding the maltreatment & abuse of hospital industry & mental institutions.
        Let’s just hope & pray that our experience has made us more stronger than all the odds we’ve learned to overcome.
        Wishing you Happy Holidays!

        Liked by 2 people

        Comment by BahreNegash Eritrea — December 18, 2019 @ 10:50 PM

      • I hope your well Gerrie and thank you so much 🙏🏼😘💞. Lol I’m not sure if it’s because of the epilepsy but I find I am a bit of a control freak. That’s mainly because I like to make sure I’m well and that I am always aware of the people around and where I am. I like learning as much as I could because helps me be better prepared for the unknown and become educated as well as make a LOT OF GOOD MEMORIES!! PLEASE HAVE A VERY COOD CHRISTMAS AND NEW YEARS!! We all DESERVE IT!!!!!!! 😘🙏🏼🦅😇💞😘

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 10:58 PM

  15. Hi Phyllis. Just wanted to let you know that yesterday I saw my Epilepsy Specialist, who is the Best of the Best, and the Nicest Specialist who I have Ever been to. She had me go to Johns Hopkins to see if I was a candidate for a second operation. I can tell you that as she read me their “decision”, the area where my first operation was done went numb. After just one round of monitoring, they said that since what’s left of my scar tissue is in my Speech Area that it would be too risky to do Grid Monitoring. They want her to try me on other medications, which we all agreed is impossible. Since I have been tried on every medicine that I can handle. None have been 100% successful. I just don’t get it? Hopkins monitors me just 1 time. Has me try Vimpat, which made all my organs go crazy and put me in the E.R., AND THEY COME UP WITH THIS DECISION???????????????????? My Epilepsy Specialist said that she kept in touch with them, during the monitoring and that they are nervous that surgery would give me Speech trouble and I would lose some of my memory. I already have a paralyzed Left Vocal Cord, so that wouldn’t be anything new, and a lot of my past medications have made some parts of my memory foggy. My Specialist, who I could tell was feeling 😟 about this, doesn’t want to try anything new, and she said that they are eventually going to have to to try the Grid Monitoring. I can tell you Phyllis, that even though I knew my Specialist and my Family are on my side, I can say that inside I definitely felt both 😭 and 😤 at Johns Hopkins.

    Liked by 1 person

    Comment by David Jensen — September 25, 2018 @ 12:50 PM

    • David, I know I may be speaking out of my hat (since I’m no doctor) but what about alternatives to surgery?

      Responsive Neurostimulation or Brain Stimulation

      It has now been shown to offer significant relief to patients with intractable seizures for whom drugs and other treatments have not worked.

      “The RNS system is an attractive option for these patients, especially since it is reversible.”

      Unlike the VNS, Responsive Neurostimulation (RNS) is designed to detect abnormal electrical activity in the brain and respond by delivering electrical stimulation to normalize brain activity before the patient experiences seizure symptoms.

      It consists of a miniaturized, implanted computer (that’s flat and about the size of a half-dollar) which can detect seizures from electrodes implanted into or on the surface of the brain and then delivers an electrical pulse to stop them.

      While other devices stimulate the nervous system continuously or in a predetermined pattern, the Neurostimulator implant is unique in that it monitors the brain, delivering jolts of electricity only when it detects the abnormal electrical activity that signals the onset of a seizure.

      “It’s like dousing a spark before it becomes a flame,” said Martha Morrell, Neuropace’s chief medical officer.

      After surgery, patients go through an optimization period, during which doctors program the RNS to recognize a typical pattern that precedes the seizure and deliver a particular pattern of electrical activity.

      With a programmer, a laptop computer with specially designed software — plus a wand and special interface — direct communication is made with the implanted RNS neurostimulator.

      Gamma Knife Surgery

      A number of clinics now offer Gamma Knife Surgery for some kinds of epilepsy, and researchers are working to improve this type of procedure.

      Gamma knife surgery, which uses a minimally invasive tool, delivers radiation treatment as though it were an actual knife, offering the kind of precision and targeting as surgery.

      These finely focused radiation beams intersect at a specific region of the brain to alter the cells in that region.

      In many cases, this can stop the abnormal electrical activity that causes the seizures.

      A study of gamma knife surgery in patients with temporal lobe epilepsy, found that 67% of the treated patients were seizure-free 2 years after surgery.

      Another study published looked at the use of gamma knife surgery to perform callosotomy in patients with severe generalized epilepsy with drop attacks.

      The results were comparable to a traditional callosotomy, in which a band of nerve fibers connecting the two halves (hemispheres) of the brain are cut, disabling communication between the hemispheres and preventing the spread of seizures from one side of the brain to the other.

      (This procedure, sometimes called split-brain surgery, is for patients with extreme forms of uncontrollable epilepsy who have intense seizures that can lead to violent falls and potentially serious injury.)

      Researchers are continuing to test gamma knife surgery to learn what types of epilepsy can be effectively treated, what radiation frequencies are best, what type of pre-surgical testing is necessary, and what benefits and side-effects are possible with this type of surgery.

      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.

      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.

      Transcranial Magnetic Stimulation

      TMS is a noninvasive type of brain stimulation which uses a strong magnet held outside the head to deliver electromagnetic currents to alter the electrical activity in the brain. This therapy has shown great promise for reducing seizures by reducing neuronal excitability.

      Some of the earliest studies found that transcranial magnetic stimulation can induce a prolonged period of protection from the types of electrical activity that cause seizures.

      Case studies have found that this technique can reduce seizure frequency by over 60% in some patients.

      In addition, researchers found that the TNS treatment also improved the mood of participants.

      Since depression is a common problem in people with epilepsy, this finding could have significant impact on the quality of life for people who suffer from the disorder.

      The most serious side-effect associated with transcranial magnetic stimulation is a headache, though there is a small risk of seizure during this treatment.

      But, this risk is low and this technique is considered to be safe.


      Since the 1970′s, researchers have demonstrated in over 50 controlled studies that a special form of brain wave biofeedback — now called “neurofeedback” — safely and effectively “retrains” the brain to stabilize its activity.

      The treatment has been used successfully with all types of seizure disorders.

      Often the effects are permanent.

      The procedure begins by attaching EEG electrodes to the body to gauge brain wave activity.

      And the learning takes place by practicing computer “game” challenges while receiving positive reinforcement from the computer.

      One of the most beneficial aspects of biofeedback is the reduction of stress in everyday life, which in turn, also helps reduce seizures.

      According to research, approximately 50% seizure control is attained within approximately 2-3 months and full seizure control can occur somewhere between 6-18 months.

      The drawback is that biofeedback is not covered by health insurance, requires many treatments, and is expensive.

      Cell Transplantation

      Another emerging approach for treating epilepsy is Cell Transplantation.

      Researchers can transplant either mature cells or stem cells derived from fetal tissue.

      Cells used for transplant are sometimes genetically engineered to produce substances to reduce seizures or protect neurons from damage.

      Cell transplantation therapies for epilepsy are still in preliminary stages of development.

      However, the encouraging results of animal studies suggest that this type of therapy may eventually be used to treat drug-resistant epilepsy in humans.

      One study tested whether transplanting GABA producing cells into the brains of rats could suppress seizures.

      (GABA cells are neurotransmitters that slow down the activity of nerve cells in the brain.)

      The cells raised GABA levels in the brain tissue, raised the seizure threshold, shortened the duration of brain discharges after seizures, and slowed the development of seizures.

      Another study tested the effect of neural stem cell transplantation in rats with status epilepticus induced by a toxin.

      The neural stem cells inhibited and decreased neuron excitability.

      Yet another study found that grafting specific types of fetal hippocampal cells into the brains of adult rats with toxin-induced brain lesions, reduced the amount of abnormal nerve fiber growth in the brain.

      The grafted cells also developed connections with another regions of the brain, suggesting that they may be able to form functional brain circuits.

      Gene Therapy

      The discovery of gene mutations that cause specific epilepsy syndromes has led to the possibility of using gene therapy to counter the effects of these mutations.

      In gene therapy, researchers typically use viral vectors — transmitting modified genetic material — to introduce new genes into brain cells.

      Viruses can also be used to introduce genes for proteins such as GABA into non-neuronal cells.

      These cells are then transplanted into the brain to act as “factories” to produce potentially therapeutic proteins.

      One advantage of gene therapy is that it can alter the cells in just one part of the brain.

      Researchers can control the activity of the introduced genes by using a genetic “switch” that responds to antibiotics or other chemicals.

      This allows doctors to turn the gene therapy off if it causes intolerable side-effects or other problems.

      Theoretically, this type of therapy should last longer and cause fewer side-effects than medication.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 25, 2018 @ 4:35 PM

      • I must admit that does sound VERY APPEALING!! As you know I am slowly in the process of starting to change medications. I will find out more after I speak with the pharmacist hopefully thismorning. However I will say that I have only ever been on tegretol and Dilantin (41 years) and am now being titrated onto toperimate. My personal warning that I am too stressed or it’s time to fly the coupe is when I get a sharp shooting throbbing pain on the right side of my head (my right temporal lobe where My brain is injured). What I did get for the short time I was being titrated was THE WORSE SHOOTING PAIN ON THE LEFT SIDE OF MY HEAD!!!!! I think that scared me more than anything in the world!!!!! But I DID FEEL MY LEG AGAIN 😃😃😃😃😃. However I sure do believe probably the brand name would help WAY MORE INSTEAD OF HINDER AND SCARE THE CRAP OUT OF ME!! What I couldn’t figure out was when I was leaving the neurologists office I asked about rescue medication and he told me to use the medications I was being weaned off of!! Lol I told my husband “first he asks me what medication I think would help? And then he tells me to use the old medications as rescue medication!! 😳”. That’s what lead me to thinking about marijuana!!!!! I’ve NEVER EVER TRIED IT (believe it or not), but it’s beginning to feel like the “SAFEST POISON” to me!!

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 10:18 AM

  16. The Great Debate — Medical Marijuana


    Medical Marijuana — It’s Here to Stay…



    Comment by Phylis Feiner Johnson — December 18, 2019 @ 11:06 AM

    • FYI I asked my pharmacist if medical marijuana is here in Canada yet? He said he hasn’t heard of anything yet.

      Liked by 1 person

      Comment by Kathy S.B — December 18, 2019 @ 7:20 PM

      • Yup, it’s available in Canada.


        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 18, 2019 @ 7:50 PM

      • WOW!!!!!!! My pharmacist said he wasn’t aware of a marijuana medication for epileptics!! I’m going to have to inform him tomorrow!!!!! THANK YOU SO MUCH PHYLIS!! Lol darn after what I just went through last weekend it SINCERELY HAS ME BEING MORE VIGILANT AND CAUTIOUS!!!!!!!


        Comment by Kathy S.B — December 18, 2019 @ 7:58 PM

      • Go Girl. It’s at least worth a try.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 18, 2019 @ 8:00 PM

      • Makes me wonder why my pharmacist said there’s no such medication out there? Hmmmm

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 9:40 PM

      • FYI: there’s no medication in Canada approved for use by epileptics yet. So your aware Heath Canada hasn’t approved a medication for epileptics yet.

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 10:07 PM

      • 😦 😦 😦


        Comment by Phylis Feiner Johnson — December 19, 2019 @ 12:35 AM

  17. I’m just trying to figure out which medication maybe best for me with NOT SO NASTY (ALMOST EVIL) SIDE EFFECTS!! That won’t kill my head lol or make me larger than I already am. Goodness if I never got hyponatremia this medication problem would not even be an issue!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — December 18, 2019 @ 12:03 PM

    • I wish I could wave a magic wand and make all those nasty side-effects go away. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 18, 2019 @ 1:46 PM

      • I wish we could all have a magic wand!! So the pharmacist took me off of the medication. THANK GOD!!!!!!! He’s going to have a talk with the neurologist and my family doctor and figure out which medication is safest and less harmful with less side effects than Topiramate. I gave everything back to him and nicely told “please get that stuff away from me 🙏🏼😊”. If I had known I would have had to be schooled on “epileptic medication” prior to going to the neurologist I would have asked the pharmacist to please teach me ahead of time 🙏🏼😊🦅😇💞

        Liked by 1 person

        Comment by Kathy S.B — December 18, 2019 @ 3:51 PM

  18. It’s amazing that the pharmacist is willing to go all that way for you. Not in America.

    And the pharmacies will not take drugs back. Once they’re in your possession, they’re yours.


    Comment by Phylis Feiner Johnson — December 18, 2019 @ 3:55 PM

    • I am a VERY LUCKY LADY!!!!!!! Your very right Phylis 😊. I have EVERYTHING, YOU AND YOUR BLOG AND EVERYONE THAT IS PART OF IT!!!!!!! PLEAS DON’T EVER STOP!! I am so new and almost naively uneducated in all of the different types of medication, POLICIES, LAWS AND ALL OF YOUR GROUP FOLLOWERS!! Thank you SO MUCH FOR EDUCATING ME I SO APPRECIATE ALL OF YOU ESPECIALLY YOU PHYLIS!! 😊🙏🏼🦅😇💗💗💗💗💗😘😘😘😘😘

      Liked by 1 person

      Comment by Kathy S.B — December 18, 2019 @ 8:42 PM

  19. GEES AND THEY WONDER WHY THERE IS SUCH HUGE DRUG PROBLEM!!!!!!! SHAME ON THEM!!!!!!! That is not NOT GOOD TO HEAR!!!!! I’m sorry about that Phylis!! 🤯🤯

    Liked by 1 person

    Comment by Kathy S.B — December 18, 2019 @ 7:23 PM

  20. I would rather be able to give the medications back to the pharmacist and have them taken care of safely then have somebody get ahold of them and then it would be my fault. I can’t possibly live with that on my shoulder that’s too much. Maybe that’s something that can be adopted in other countries? You never know. It’s the safest route to go

    Liked by 1 person

    Comment by Kathy S.B — December 19, 2019 @ 9:51 AM

  21. On certain things 😘. On other things we here in Canada could also learn a lot of things from other countries too!! Nobody’s perfect and that’s why it should be a “group effort” 😘. I was even thinking maybe I need something for my neck then get to the head part but like I said I’m doing my best to keep informed and properly educated. Thank you Phylis and please have a very good day today 😘

    Liked by 1 person

    Comment by Kathy S.B — December 19, 2019 @ 12:19 PM

  22. Lol 😂 or not 😳 My husband and I were left wondering why the neurologist didn’t do an mri, eeg (awake for 24 hrs and regular) before he even seen me for a few minutes (really) then just changed my prescription with what I THOUGHT WOULD WORK? In all honesty he already told me what I knew was happening with me, but the only medication he wanted me on was levitramiacine!!!!! I thought that’s why they were doctors? 🤔🤔🤔🤔🤔

    Liked by 1 person

    Comment by Kathy S.B — December 19, 2019 @ 12:55 PM

  23. Blood work to check med levels would have been nice. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 19, 2019 @ 2:12 PM

  24. Thanks Susan for the list of ALL the potential side effects of dilantin.
    I understand where you’re coming from because I had been through the hardships & maltreatment of the hospital industry & the law enforcement establishment, due to my epileptic seizures & the hullicinating side effects of my prescription drugs, Dilantin 600mg/day & Keppra 1000mg/day.
    Thanks to my good friends & loving family members who stood up against the wicked establishments for me when I needed it the most, I managed to avoid being condemned to the mental hospital.
    Unfortunately, the first responders, Ambulance technicians, fire fighters, law enforcement officials, hospital emergency room nurses & doctors can only react to the immediate condition, presented at the very moment of the incident which may look like “MENTAL DISORDER”, thanks to the side effects of the Epilepsy drugs which are already described in the prescription black box.
    You are very fortunate to avoid the dreaded side effects of the prescription drugs.

    Liked by 2 people

    Comment by BahreNegash Eritrea — December 19, 2019 @ 5:49 PM

  25. Gerrie, although I went through NOTHING like the hardships you went through — with restraints and near incarceration — I did become a zombie and “went to sleep” for three days on Dilantin.

    Not to say that can come close to the mistreatment by those very people who are meant to “treat us” and “care for us” yet who end up doing quite the opposite.

    I accepted my side-effects “bravely,” until they almost took my life away.


    Comment by Phylis Feiner Johnson — December 19, 2019 @ 9:25 PM

    • Yes Phylis, the adversity we had learned to overcome through out our difficult times has only made us more stronger & determined to carry on with our lives, just like pure gold tested & minted by fire.
      I hope our testimony stands out speaking for the voiceless masses condemned to languish in isolation by the neurological disorder & unjustified prosecution imposed by those who swore to protect & serve the wellbeing of the whole population.
      Despite the dreadful journey to achieve some normalcy in the struggle against Epilepsy, it’s fascinating to find out our willpower to live in freedom is far more stronger than the adversities to overcome, making it this far to celebrate another Christmas & to welcome another new year.
      Happy Holidays!

      Liked by 2 people

      Comment by BahreNegash Eritrea — December 20, 2019 @ 4:25 AM

  26. I am now coming off my Topiramate Compound/liquid and switching to Briviact. If all goes well with the Briviact we might wean me off the Levetiracetam too. I have actually NEVER been on just one prescription medication for my Epilepsy. I recently saw my Neurosurgeon for the 2nd time and he’s sending me for “a special MRI” for my Chiari Malformation. He said too “we may just have to bite the bullet and do surgery.” I’d be happy to be relieved of more of the stuff I take because of the symptoms for that too. The Neurosurgeon I had for my Epilepsy surgeries actually confirmed my Chiari Malformation type 1 back in 2008 during my pre-surgical testing for my Epilepsy. The neuropsychologist actually diagnosed it with some of the symptoms and tests she ran before I had all the other tests in 2008. I am weaning off the Topiramate because of the Pancreatitis I have been dealing with recently. It, as well as the Levetiracetam actually lists it as a rare side effect in Post-Marketing reports. I seem to attract rare or unlisted side effects of prescription medications. That’s why I won’t even dare try Fycompa, since it’s got Homicidal thoughts or actions listed. No way do I want to end up in jail because of a side effect of a medication. It’s been proposed to me twice. My Epileptologist also gave me the choice of Onfi, but I don’t want to take a benzodiazepine daily again after what I went through with Clonazepam. I will be beginning the New Year without the Topiramate. We’ll see what happens. They haven’t called to schedule my MRI yet though for my Chiari Malformation(I called yesterday morning) and they told me it would take a week to verify my VNS. Until then I am stuck in pain.

    Liked by 2 people

    Comment by trekkie80sgirl — December 20, 2019 @ 1:08 AM

    • I am so sorry for your pain and the agony of waiting to see what will be.

      Maybe surgery will be your answer.

      Epilepsy and Brain Surgery — The Basics


      I wish you well and a blessed holiday season.


      Comment by Phylis Feiner Johnson — December 20, 2019 @ 9:29 AM

    • Goodevening Trekkie80girl 😊. I hope all is well on the NEW DRUG!! I PRAY FOR YOU 🙏🏼🙏🏼🦅🦅😇😇🙏🏼🙏🏼💞💞💞💞💞. I was wondering out of curiosity can you please tell me exactly what a “Chiari Malformation is please and thank you? 😘. I simply ask because apparently my MRI read that the left side of my brain is actually larger than the right side of my brain yet the right side works twice as hard if not harder than the left side of my brain? Hmmm 🤔

      Liked by 1 person

      Comment by Kathy S.B — December 21, 2019 @ 11:17 PM

      • Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 22, 2019 @ 9:22 AM

      • Goodafternoon Phylis 😊. Oh ok I never knew that before. Thank you for teaching me something new today. You know for the life of me I couldn’t and still can’t understand why even the pharmacist and doctors keep trying to bring my TEGRETOL back up to 1600mgs/daily from 1200mgs and clobazam back up to 20mgs daily if that’s why I have hyponatremia!! Because those drugs are the culprits!! 😳🤔🤔

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 4:38 PM

      • Chiari Malformation has many types. It has many symptoms and co-morbidities that are multi-system Daily headaches, as well as headaches that happen when you cough; sneeze; turn your head. Comorbidities can include MCAS(Mast Cell Activation Syndrome), POTS(Postural Orthostatic Tachycardia Syndrome), IBS(Irritable Bowel Syndrome), EDS(Ehlers-Danlos Syndrome) and many others. Multiple Nutritional deficiencies and hormone problems can also be a symptom of Chiari Malformation. The best bet is finding a Neurosurgeon who specializes in Chiari Malformation when you find out you have it to monitor your symptoms. I have Raynaud’s, headaches(which no Migraine medication can really treat, but Migrelief helps dull the pain), been having more joint pain recently, and pain by my neck more that it feels like my head locks often. Here’s some links regarding Chiari Malformation.



        Liked by 2 people

        Comment by trekkie80sgirl — December 22, 2019 @ 5:28 PM

      • OH HOW I PRAY THAT IS NOT WHAT IS WRONG WITH ME!!!!!!! I seriously can’t even eat and I’ve never been so nauseous and dizzy in my whole with the WORST HEADACHE EVER STARTING IN MY NECK!!!!!!! To the point where focusing or even opening my eyes hurts my head!!

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 11:01 PM

      • Get OFF that med. Call your neuro and demand it.

        You shouldn’t be having such drastic side-effects.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 23, 2019 @ 9:16 AM

      • Goodmorning Phylis 😊 yes I ended up in emergency lastnight my husband thought it was low sodium (it wasn’t). I’m supposed to go into my family doctor today because apparently I may still have that infection!! I stopped that last Saturday night and after going through that for that weekend on 2 days of it I knew to stop it ASAP!! But I don’t even remember being brought in late lastnight!! I was given an onfi and said my infection still hasn’t cleared up yet. Ended up thismorningi felt like a train ran over me!! So I’ll call my doctor today and see what to do now. Thank and PRETTY PLEASE HAVE A VERY GOOD DAY TODAY!! Maybe it is time to ask about Lamictal or Briviact. As long as it brand name extended release medication I’m hopeing and praying that works better!! However I was surprised by the fact my neurologist didn’t want me to have a eeg, sleep deprived eeg, mri or evening CT scan!! Leaves me to wonder what the heck kind of doctors do we have now a days? So I will go into the doctor today and keep you informed!! I haven’t had a chance to go for a flu shot yet I hope I can get one today 🤞🏽🤞🏽

        Liked by 1 person

        Comment by Kathy S.B — December 23, 2019 @ 10:29 AM

      • I can tell you that Lamictal has worked excellently for me.

        After I got over the initial hump (of being crazy/hyper), I changed my AM dose to PM and all was well.

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

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 23, 2019 @ 10:35 AM

      • CONGRATULATIONS PHYLIS!!!!! WAY TO GO!!!!!!! 😃😃😃😃😃. I tell you after what I have been through (I used to bowl and would get a lot of strikes in a row!!!! The other day I was lucky to even get close to 50 points!!!!). That sure caught everyone’s attention in my family!!!!! Of course me being the rebel I am was not going to lose by zero!! As long as I got one point that was all that mattered to me!! 😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — December 23, 2019 @ 10:40 AM

      • You would think if that’s what’s wrong they would catch that on mri’s, ct scans, eeg’s and what not by now??

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 11:18 PM

      • Have you had an extended Video EEG?

        Oftentimes they pick up things that other tests don’t.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 23, 2019 @ 9:20 AM

      • Maybe that is what needs to be done!!!!!!! Thank you Phylis 😘

        Liked by 1 person

        Comment by Kathy S.B — December 23, 2019 @ 10:42 AM

    • Oh and if “ONFI” is what we here in Canada refer to as “ativan” in all honesty IF I COULD I WOULD EVEN JUST SWITCH TO SIMPLY ATIVAN!!!!!!! Lol but a LONG LASTING ONE!!

      Liked by 1 person

      Comment by Kathy S.B — December 21, 2019 @ 11:19 PM

      • Clobazam is a benzodiazepine class medication that was patented in 1968. As of 2005, clobazam is approved in Canada for add-on use in tonic-clonic, complex partial, and myoclonic seizures. … leads to withdrawal symptoms which are similar to those seen during alcohol and barbiturate withdrawal.

        I don’t think it’s the same as as Ativan.

        Ativan (lorazepam) is useful for the short-term relief of manifestations of excessive anxiety in patients with anxiety neurosis.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 22, 2019 @ 9:30 AM

      • I realize that, but if clobazam is a possible cause in my hyponatremia with TEGRETOL wouldn’t you think they would try and get or keep me low if I already brought my levels down over months?! Only to make me go all the way back to where I started and increase it on top!!!!! With a diuretic. No way I am doing that!! It almost leaves me to wonder why I can lay flat on my back and feel normal yet the minute I sit up or stand up I start going numb and get dizzy/nauseous. The crazy life of an epileptic

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 4:44 PM

      • Oh Phylis it’s SO BEWILDERING how we come across certain things because we’re trying to find another document!!!!!!! I was looking for a document I had on and now can’t find!! However in the process I did find a letter from my family doctor that I had to sign to be able to get the clobazam and ativan!! I can almost understand the ativan (after the ordeal I had the other weekend), but to also see clobazam on the same document really made me shake my head!!!!! Lol I think I’m a rebel in disguise!!!! For some reason if I’m told “I HAVE TO TAKE SOMETHING!!” Oddly I do EXACTLY THE OPPOSITE!! Sometimes it’s a good thing other times it’s not!! This time around I am NOT INCREASING IT BACK UP OR TAKING IT ON TOP OF THE TEGRETOL!!!!! And that’s why a diuretic is being given to me!! Go figure. 🤨🤨🤨🤨🤨

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 4:59 PM

      • Onfi is similar, in that it’s in the same drug class as Ativan/Lorazepam, but it’s a different drug. Clonazepam/Klonopin also belongs to that family of drugs. I took Lorazepam and Diastat/Diazepam rectal gel as rescues when I was younger. I was on Clonazepam daily for 24 years total off/on. It’s a pain weaning off benzodiazepines. Benzodiazepine withdrawal is horrible. If you find yourself using one more like a daily basis, rather than just an emergency, you probably should have a better long-term medication.

        Liked by 2 people

        Comment by trekkie80sgirl — December 22, 2019 @ 5:03 PM

      • That’s what I thought as well. That’ll you SO MUCH FOR THE CLARIFICATION TREKKIE!! I greatly appreciate your help 🙏🏼🦅😇😘. I was just laughing mad at dirt when I found that letter earlier today!! I wasn’t sure if I should laugh or get upset, but it’s pretty bad when a neurologist asks you what you should take and all your trying to do is help yourself stay better. Thank you so much and please have a VERY BLESSED CHRISTMAS AND NEW YEAR TO YOU AND YOUR FAMILY!! 😊🙏🏼🦅😇😘

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 6:03 PM

  27. Kathy, Thank you for sharing your experience, I’m pleased to let you know I made it through the EYE EXAM without further complications.
    In fact, the Ophthalmologist office staff were so sympathetic to my concern of having another grand mal seizure in their own vicinity again, they did everything possible to assure me that the exam can be carried out without using light strobes &/or lasers beams which has been triggering my seizures.
    I’m very grateful for their professional services & considerate motives in helping me to get over my deep concern to complete the eye exam.
    I’m very pleased that the whole process went smooth more than I expected it.
    As for the side effects & of our seizure medications, I’ve come to realize & accept that there’s NO safe prescription out there.
    Therefore, we just have to keep trading one medication & it’s side effects for another, until we find the least lethal risky medication we can live with.
    Good luck controlling your seizures & managing your prescription side effects.
    Happy Holidays!

    Liked by 2 people

    Comment by BahreNegash Eritrea — December 20, 2019 @ 1:10 PM

    • You ROCK, Gerrie.

      Between just by being brave and true, your wisdom and your advice.

      If I don’t speak to you before, have a blessed Christmas and a healthy New Year.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 20, 2019 @ 3:18 PM

      • Thank you Phylis,,, I appreciate your inspiring compliments.
        Thanks to your courageous devotion & committment to carry on the devine mission to educate the desperate survivors of Epilepsy & the rest of the uninformed world, everything I’ve learned about Epilepsy & how to survive & overcome the struggle with the neurological disorder, medical & social hardships, I learned them from you & the brave members of EpilepsyTalk, sharing their experience with the rest of the whole world for the benefits of all the people affected by the Neurological disorder, Epilepsy.
        Therefore, you & all the members of this informative forum deserve the credit more than I do.

        Liked by 2 people

        Comment by BahreNegash Eritrea — December 20, 2019 @ 9:06 PM

    • Goodevening Gerrie 😃😊. I am SO HAPPY AND RELIEVED TO HEAR ALL WENT WELL!!!!! I truly know the difficulty of looking (nevermind even thinking about eye exams!!!!!) for fear of myself as well!! But my husband due to his diabetes actually gets eye injections every month in his eyes (and laser surgery sometimes) so the veins in his eyes don’t rupture!! Lol I ALWAYS TRY TO OUT TOUGH HIM and quickly do what I know I have to so I can get through any medical appointments ESPECIALLY EYE APPOINTMENTS!!!!!!! Lol I think that’s the first time my husband ever heard me say “I would rather have been kicked by a jacka.. than ever have to do that again!!!!!!! 🥶😰🤔🤭😂😂😂😂😂”. He was not very impressed with me!! I’m happy I could at least give an idea as to some assistance 😘

      Liked by 1 person

      Comment by Kathy S.B — December 21, 2019 @ 11:35 PM

      • Yes Kathy, I totally understand your deep resentment to the excruciating procedures of the eye exam.
        I admire you & your husband’s courage to keep bearing the brunt of the excruciating procedure.
        Having learned the correlations of my seizures to my eye conditions the hard way, thank you for your support, caring concern & encouraging kind words, I finally got over my deep concerns & went through the eye exam without the dreadful complications I was worried about since my last eye exam.
        Now that I crossed one milestone to cure my vision & eye sight, I can concentrate on searching for better solution to control my seizures & hopefully better life with or without Epilepsy.
        Best Wishes to you & your husband, Happy Holidays!

        Liked by 2 people

        Comment by BahreNegash Eritrea — December 22, 2019 @ 5:05 PM

      • THANK YOU GERRIE!! Ironically my husband had his eye injections and laser surgery the other day as well!! They way we see it is at least we get to see eachother, children and loved ones 😘😘🙏🏼🦅💞😘. THATS totally worth it!! I will agree as an epileptic it falls in the same category as having to see a neurologist, doctor or have an EEG!!!!!!! But I always like to be better prepared than to be sorry!!!!!! Lol me and sorry have issuers lol 😂 I’m a Canadian 😘😘. However I am SO GRATEFUL YOU WERE ABLE TO GET PAST what almost feels like the WORST TEST IN THE WORLD NEXT TO THE DENTIST!!!!!!! 🥶🥶🥶🥶🥶🥶🥶. I will have to make the DREADED DENTIST APPOINTMENT ASAP!!!!!! But first I would like to get the epilepsy (AND HYPONATREMIA) ADDRESSED EVEN FASTER!!!!!!! I told my husband “I’ve only ever really been on three medications!! OH CRAP THERE’S A MILLION NOW!!!!!!! 😰😰😰😰😰”. Poor guy said “if I could see you I would stare at you then laugh my head off!! Talk about the blind leading the blind!!!!!” 😂😂. We’re a real CLING KLANG COUPLE!! Lol but I am VERY HAPPY TO BE OF ASSISTANCE AS LONG AS I CAN!! I just speak from my own personal experience though because I don’t much of any other epileptics experiences until now and other epileptic groups. OH I SWEAR WERE THE MOST LEVEL HEADED ACCEPTING, LOVING COMPASSIONATE PEOPLE ALIVE!!!!!!! And WE WILL BE BETTER I KNOW IT!! 😊🙏🏼🦅😇😘💗😘

        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 6:18 PM


        Liked by 1 person

        Comment by Kathy S.B — December 22, 2019 @ 8:29 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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