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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Resources:

http://www.drugs.com/keppra.html
http://www.drugs.com/dilantin.html
http://www.efwp.org/programs/side_effects.shtml
http://health.nytimes.com/health/guides/disease/epilepsy/medications.html
http://www.drugs.com/sfx/phenytek-side-effects.html
http://www.epilepsyfoundation.org/Medications-Database.cfm
http://www.webmd.com/epilepsy/medications-treat-seizures
http://my.epilepsy.com/epilepsy/seizure_medicines
http://www.rxlist.com/onfi-drug/side-effects-interactions.htm
http://www.thedailybeast.com/newsweek/2009/04/10/a-storm-in-the-brain.html
http://www.webmd.com/epilepsy/news/20110613/fda-oks-new-epilepsy-drug
http://www.emaxhealth.com/1275/new-epilepsy-drug-may-significantly-reduce-seizures
http://www.centerwatch.com/drug-information/fda-approvals/drug-areas.aspx?AreaID=10
http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=20391
http://secure.medicalletter.org/cannotaccess?ac=1&a=1332b&t=article&n=10742&p=tml&title=Vigabatrin%20(Sabril)%20for%20Epilepsy&i=1332
http://www.drugs.com/news/potiga-approved-adult-epileptic-seizures-31914.html
http://www.drugs.com/mtm/peganone.html
http://www.drugs.com/cdi/rufinamide.html
http://www.drugs.com/mtm/sabril.html
http://www.drugs.com/viibryd.html
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm325038.htm
http://my.epilepsy.com/medications/b_clobazam_skin?utm_source=Epilepsy+Therapy+Project


36 Comments »

  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.

    Like

    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.

      Like

      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.

    Like

    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.

      Like

      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?

    Like

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

    Like

    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. 😦

      Like

      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.

    Like

    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.

    Mark

    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”? 🙂

      Like

      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 ?

        Like

        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.

        https://online.epocrates.com/u/10b6824/Fycompa/Black+Box+Warnings

        Like

        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 1 person

    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.

    Like

    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. 🙂

      Like

      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 1 person

    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.)

      Like

      Comment by Phylis Feiner Johnson — September 23, 2018 @ 9:53 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
    nervousness
    slurred speech
    trouble with breathing, speaking, or swallowing
    unsteadiness, trembling, or other problems with muscle control or coordination
    Rare
    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
    chills
    cough or hoarseness
    dark urine
    diarrhea
    difficulty with moving
    fainting spells
    fever with or without chills
    general feeling of discomfort or illness
    general feeling of tiredness or weakness
    hair loss
    headache
    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
    weakness
    weight loss
    yellow eyes or skin

    Like

    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?

      https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

      OR

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

      https://epilepsytalk.com/2018/01/28/move-over-vnstheres-a-new-guy-in-town/

      Like

      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.

        Like

        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.)

        Like

        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).

        Like

        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.

        Like

        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.

        Like

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

      • Thanks Trekkie!

        Like

        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!
    Gerrie

    Liked by 1 person

    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”? 🙂

      Like

      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

  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.

    Like

    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.

      Biofeedback

      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.

      Like

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