Epilepsy drug side-effects…

Epilepsy drug side-effects… | June 19, 2022

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 some possible side-effects.

I hope you don’t have to suffer any of them. (Or as few as possible.)

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

Ativan (lorazepam) — behavior changes, drowsiness, sleepiness, fatigue, poor coordination, unsteadiness and addiction.

Banzel (rufinamide) — loss of appetite, vomiting, dizziness,headache, fatigue, irritability, attention difficulty, double vision, itchiness, stomach pain. People who have a heart rhythm irregularity, should not take Banzel.

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

Carbatrol (extended release carbamazepine) — dizziness, nausea, drowsiness, blurred or double vision, skin rashes, abnormal blood counts (rare).

Depakote (depakene, valproate, valproic acid) — dizziness, nausea, vomiting, tremor, hair loss, weight gain, depression in adults, irritability in children, reduced attention, and a decrease in thinking speed. Over the long-term, the drug can cause bone thinning, swelling of the ankles, irregular menstrual periods. More rare and dangerous effects include hearing loss, liver damage, decreased platelets (clotting cells), and pancreas problems.

Diamox (acetazolamide) — appetite loss, frequent urination, drowsiness, confusion, extremity numbness, kidney stones.

Diastat Acudial (diazepam rectal gel) — drowsiness, sleepiness, fatigue, dizziness, headache, pain, diarrhea, rash, nervousness, slowed speech, poor coordination, unsteadiness, behavior changes.

Dilantin (phenytoin) – moderate cognitive problems, slurred speech, confusion, hallucinations, mood or behavior changes,hyperactivity (mentally or physically), unsteadiness, dizziness, fatigue, gum overgrowth, potential body/face hair growth, skin problems, bone problems (osteoporosis), suicide thoughts or attempts. Plus, Dilantin can cause a rare and dangerous rash called Stevens-Johnson Syndrome.

Felbatol (felbamate) — anorexia, vomiting, insomnia, nausea, headache, dizziness, vision problems, poor coordination, tremor, mood changes, anxiety, depression, liver and blood toxicity. (If you are taking it, have blood cell counts and liver tests regularly.

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

Gabitril (tiagabine) – nausea, dizziness, vomiting, diarrhea, tremor, nervousness, difficulty concentrating, irritability, anxiety, and confusion.

Hp Acthar Gel (acth [adrenocorticotropic hormone]) — insomnia, increased appetite, weight gain, irritability, fluid retention,sleepiness, fatigue, poor coordination, loss of strength, dizziness.

Keppra (levetiracetam) — “Keppra Rage”, dizziness, drowsiness, irritability, sore throat, tiredness, weakness. Abnormal thoughts, decreased coordination, extreme dizziness, drowsiness, fatigue or weakness, hallucinations, memory loss,muscle or neck pain, new or worsening mental, mood, or behavior changes (eg, aggression, agitation, anger, anxiety, apathy, depression, hostility, irritability, panic attacks, restlessness), new or worsening seizures, suicidal thoughts or attempts.

Klonopin (clonazepam), Valium (Diazepam), Xanax (alprazolam) — drowsiness, loss of appetite, poor coordination, unsteadiness, mood and behavior changes, addiction.

Lamictal (lamotrigine) — dizziness, nausea, fatigue, headache, blurred vision, clumsiness. Also, in rare cases, Lamictal can cause Stevens-Johnson Syndrome which poses a dangerous risk if not treated immediately.

Lyrica (pregabalin) — weight gain, swelling of hands and feet, nausea, sleepiness, blurred or double vision, dry mouth, difficulty concentrating, confusion, dizziness, weakness, tremor.

Mysoline (primidone) — clumsiness, unsteadiness, vertigo,dizziness, appetite loss, nausea, vomiting, fatigue, insomnia, irregular eye movements, blurred or double vision, hyper-irritability, depression, hyper-activity (children).

Neurontin (gabapentin) — weight gain, ankle swelling, fatigue, dizziness, clumsiness, twitching.

Onfi (clobazam) — New discovery: The FDA is warning the public that Onfi can result in Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) at any time during Onfi treatment. However, the likelihood of skin reactions is greater during the first 8 weeks of treatment or when Onfi is stopped and then re-started.
All cases of SJS and TEN in the FDA case series have resulted in hospitalization, one case resulted in blindness, and one case resulted in death. Other side-effects include mood or behavior changes, anxiety, panic attacks, trouble sleeping, muscle spasms, irritably, agitation, aggressiveness, restlessness, hyperactivity, depression.

Peganone (ethotoin tablets) — do not use this medication if you have liver disease or a blood cell disorder. Call your doctor at once if you have any unusual bleeding, weakness, or any signs of infection, even if these symptoms first occur after you have been using the medication for several months.

Perampanel (fycompa) — irritability, anxiety, aggression, weight increase, fatigue, weakness, dizziness, balance disorder, loss of muscle coordination, blurred vision, upper respiratory tract infection. NOTE: Just recently the FDA put a black box warning on Perampanel, warning of severe psychiatric and behavioral reactions, including: aggression, hostility, irritability, anger, homicidal ideation and threats.

Phenobarbital (luminal) — drowsiness, dizziness, upset stomach, anemia, rash, fever, vitamin folic acid deficiency, low calcium levels, bone loss, irritability, depression, hyperactivity (children), difficulty concentrating, memory problems, slurred speech, decreased sexual interest, mildly addictive.

Phenytek (extended phenytoin sodium) — constipation, dizziness, headache, nausea, trouble sleeping, vomiting, high blood sugar, decreased coordination, confusion, jerking movements of the eyes, shaking hands, slowed thinking, movement, memory problems, slurred speech, poor concentration, new or worsening mental or mood changes, seizures.

Sabril (vigabatrin) — headache dizziness, tremor, blurry vision, vision loss, abnormal MRIs, anemia, sleepiness, numbness of extremities, weight gain, swelling, fluid retention, hyperactivity, memory impairment, constipation, diarrhea, urinary tract infection, upper respiratory tract infection, poor coordination, joint pain.

Tegretol (carbamazepine, carbatrol) Tegretol XR (extended release carbamazepine) — dizziness, sleepiness, unsteadiness,blurred or double vision, headache, nausea, skin rashes, abnormal blood counts, bone and liver problems. (You must be tested for toxicity regularly.)

Topamax (topiramate) –weight loss, nausea, sleepiness, dizziness, tingling skin, clumsiness, unsteadiness, confusion, nervousness, difficulty thinking or talking, speech, memory and vision problems, feeling of pins and needles in fingertips and toes, depression, psychiatric disorders.

Tranxene (clorazepate) — sleepiness, fatigue, poor coordination, unsteadiness, behavior change.

Trileptal (oxcarbazepine) — difficulty concentrating,sleepiness, fatigue, dizziness, double vision, nausea, headache, unsteadiness, loss of coordination, rash, low blood sodium.

Viibryd (vilazodone hydrochloride) — do not use Viibryd if you have used an MAO inhibitor. Tell your doctor if you have: liver or kidney disease, a bleeding or blood clotting disorder,seizures or epilepsy, low levels of sodium in your blood(hyponatremia), bipolar disorder (manic depression) or a history of drug abuse or suicidal thoughts. (So, if it’s for depression, just what can you use it for???)

Vimpat (lacosamide) – dizziness, unsteadiness, shakiness, falling, headache, nausea, vomiting, double vision, blurred vision, drowsiness, diarrhea, unintentional rapid eye movement, tremor, memory mood problems. (In rare cases, Vimpat may affect internal organs, blood counts or heart rhythm.)

Xcopri, (Cenobamate), dizziness, tiredness, nausea, vomiting, constipation, decreased appetite, diarrhea, or weakness may occur. Other serious side effects, include: problems with walking/balance, problems with coordination, vision changes (such as blurred vision, double vision, decreased vision), feeling of spinning (vertigo), trouble reading/speaking/writing.

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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Posted in Epilepsy, Medication Issues
Tags: antiepilepsy drug side effects, Ativan, Banzel, Carbatrol, depakote, Diamox, Diastat Acudial, Dilantin, Felbatol, Frisium, Gabitril, Hp Acthar Gel, Keppra, Klonopin, Lamictal, Lyrica, Mysoline, Neurontin, Ocopri, Onfi, Peganone, Perampanel, Phenobarbital, Phenytek, Rufinamide, Sabril, Tegretol, Topamax, Tranxene, Trileptal, Viibryd, Vimpat, Zarontin, Zonegran

14 Comments »

Why isn’t CENOBAMATE / aka XCOPRI listed on your list ? Years back when I was suggested BRIVIACT & read up on it, it looked to be the same then as what LAMICTAL had in it, & that caused with me INSOMNIA which I thought for the rest of my life I may have, until XCOPRI came along, & since 11-08-21 & getting up to 150MGs a day with 3 50MG tablets, NO seizures or seizure activity, PLUS I am eating some of the foods I dared not eat in the past 35 years when I learned how NITRATES & NITRITES & MSG’s triggered my seizures, which I knew 25 years before then, with the same foods causing petit mal seizures. 1 day at a time though with eating the foods I have not had for 30+ years. XCOPRI will change the GABA & GLUTAMATE balances IF your brain has that problem with GLUTAMATE & GABA, which I believe 80% of us have that problem daily in one way or another.

LikeLiked by 1 person

Comment by James D — June 19, 2022 @ 7:58 PM

Reply
- Thank you James and I’m sorry.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:31 AM
  
  Reply
  - Don’t lose sleep over it. I asked my herbalist today, who I see once in a while & she had a drug book, a paper back that list every drug made except XCOPRI / CENOBAMATE, so she said it will maybe be in the 2022 book as she had a 2021 drug book. It list every side effect & every good thing each drug was made to do & it is a $40.00 book that she buys every 2 or 3 years.
    
    LikeLiked by 1 person
    
    Comment by James D — June 20, 2022 @ 9:06 PM
I’m lucky I never had any major side effects from lamotrigine that I noticed. The main problem I have which isn’t listed is that it makes me DUM DUM DUM. I can’t remember one minute to the next and my vocabulary is noticeably smaller.

LikeLiked by 1 person

Comment by Hetty Eliot — June 19, 2022 @ 8:29 PM

Reply
- I’ve been on Lamotrigine for so long, I can hardly remember life without it. (No pun intended.) But like you, no side-effects.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:34 AM
  
  Reply
I’ve had so many different drugs, and they all badly affected me, nearly went blind with Tegretol, was on sodium valproate for years, my periods stopped with no explanation, no menopause, then they found out about how it affects female hormones, the worst one for us girls is weight gain,with all of them my weight’s seesawed over the years with these drugs, I’m now in my 60s and have just given up on keeping slim, at least they’ve dropped those old ones like phnobarbitone, the chemical straightjacket

LikeLiked by 1 person

Comment by Gail Barry — June 20, 2022 @ 4:56 AM

Reply
Sounds like you’ve a had a really rough time of it, Gail.

I do remember Pheno and Dilantin were numb and dumb drugs. But there are those who still swear by them.

As always, “different strokes for different folks.”

LikeLike

Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:38 AM

Reply
Thanks so much for compiling this information. Are there resources available for treating the side effects?

LikeLiked by 1 person

Comment by L J — June 20, 2022 @ 2:56 PM

Reply
LJ, I wish! 🙄

LikeLike

Comment by Phylis Feiner Johnson — June 20, 2022 @ 3:03 PM

Reply
I know that this is slightly different in direction and bit more like the former discussion, but it does cover both difficult subjects. I have always maintained that epilepsy is a more-than-difficult medical condition. Pile on top of that a neurologist who insists that you need another medication to control your seizures. When you go into the pharmacy and ask them how much it is going to cost, the best line that I have heard so far is this – “that will be a total of $1,038.00; will that be a problem for you?” That drug, or lack of it, right there on that spot began to make me nauseas. I’m not kidding. And then I almost fell to the ground. Our epilepsy is already difficult enough, and then we are prescribed a medication that there is no way of affording. It really did make me pretty sick on that spot. I have now been prescribed a necessary emergency rescue inhaler for my intractable nocturnal seizures. Here we go again. And I am not kidding, even with insurance that Valtoco inhaler is going to cost over $220.00 for a dose. I do hope that when I find a way to afford these out-of-reach medications, they will bring about the relief I long for. These necessary medications might even give me a lower or nonexistent number of side effects from other antiseizure medication; my lamotrigine gives me none.

LikeLiked by 1 person

Comment by George — June 20, 2022 @ 3:05 PM

Reply
- He who has the most money “wins”. (Present company excluded.)
  
  Have you tried any of these systems?
  
  Epilepsy — Top Financial and Medical Assistance Programs https://epilepsytalk.com/2019/03/19/epilepsy-top-financial-and-medical-assistance-programs/
  
  When Your Meds Cost More Than You Can Afford — AED Drug Assistance Programs https://epilepsytalk.com/2021/04/27/when-your-meds-cost-more-than-you-can-afford-aed-drug-assistance-programs/
  
  Health Insurance — No-Cost & Low-Cost https://epilepsytalk.com/2017/08/17/health-insurance-no-cost-low-cost/
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — June 20, 2022 @ 3:34 PM
  
  Reply
  - I completely agree with you George! I have recently told ALL of my Drs that it will literally take an act of Congress to change the way Health Insurance companies view our health issues and the types of drugs we need to control our specific needs. It’s not an easily understood problem and we all know that Congress moves at the pace of a Sloth. There seems to be an on again/off again allowance for certain meds that insurance companies will cover and at any time they will then decide to stop covering them leaving us stuck and that is so not a good thing because our bodies can’t just stop taking a drug we have to maintain a therapeutic level of for chemical equilibrium. Why is this such a hard concept for most people to understand?? It isn’t just AED’s that can cause a reaction for us, it is also other meds we take that we can react to. For instance, I suffer from severe migraines as well as having epilepsy. My epilepsy is under control as long as I keep taking my meds but let’s face it those AEDs are very powerful drugs. I was recently given a new triptan med, the smallest dose, to take at the onset of a bad headache and had a very bad drug interaction from it in combination with my other meds. Is this kind of thing easily understood? No, it is not. It is a whole different can of worms and I am bullied about this by an insensitive boss and I am too much of a lady to tell him what I really think of him but one day I know I will because he laughs at me and threatens to fire me all the time. So far, I just walk away from him. He knows I know more than he does about disability laws and he wants to avoid a lawsuit…lol. He is an idiot! He also has little cause to fire me, I do my job well. What it has amounted to has been searching out the most effective meds that my insurance company will cover and sticking with what works. I have needed my Dr. to provide the prior authorization letters so they cover the cost and those letters usually last a year. I’ll be honest, it is a pain in the butt! The other problem is that health insurance companies rule the Drs and not the other way around. Each state also has their own rules which I found out the hard way when I moved from NY to CO. This is a very messed up system we have in the US and healthcare has NOT been a priority for a very long time. We have said it before and it needs to be screamed very loud!! It is the cause that yells the loudest that gets the most funding and epilepsy isn’t it. I recently told someone some of the triggers including the changing temperatures in a shower or a bathtub and they didn’t believe me. One of my neurologists explained to me as a child that seizures can be compared to spark plugs in a car. When you try to start a car and something happens that the car won’t start, very often, it is because one of the spark plugs misfires and doesn’t send the signal to the part of the car that needs to help that part of the car get going and the engine seizes. That is what happens in the brain he told me except now I understand the brain a little better! LOL… Sometimes, I become angry when I have to explain why I wake up with a migraine most of the time. Our body is a chemically charged instrument, that’s how it works. When we go to sleep most of our body chemistry slows down and goes to sleep too.When we begin to wake up so does our body chemistry. For some of us tho’ it’s too much of a chemical charge, like me and I will have a headache or a migraine. Some of us may have seizures. That is the way we are wired unfortunately, so we need different meds that work with our body to help it work better.
    Wouldn’t it be nice if insurance companies could just understand these simple concepts and tell the drug companies to quit messing around with greed and politics and help us help each other?? I always thought as human beings that is what we were supposed to do….help each other. I keep hoping and praying that happens for all of our sakes.
    
    LikeLiked by 1 person
    
    Comment by Janet R. — June 23, 2022 @ 5:27 PM
I was yanked off of Sabril first week that I started it. My Neurologist had a flashing red computer screen that he showed me when called to get to his office asap!
In the 1990’s the FDA stated that the prolonged usage of Sabril would cause the person taking the medication permenant blindness!
Luminal, another medication I was taken off of that because of allergic reactions as with too many AEDs that out there.
You named the only 2 medications that I’m taking and I have no adverse or allergic reactions to. I was taking the brand name that you wrote now here where I am has only had the generic version for over 25+ years.

My only adverse affects is faulty wiring, illicit drugs(street drugs) and the stress of people stealing from me and the police not doing a damned thing..
This is already a hard month as I had my last severe Atonic seizure on the 18 and when I woke my wallet was stolen from my pouch as was my medication!
Strangely and thankfully enough Nothing else!
Paramedics got police to come… Police did a half ass report with me barely conscious and getting brow Beaton “are you going to going to stay awake to give a report or do you want me to leave!”
Another cop that doesn’t know about Epilepsy!!
I yelled, halfheartly and said “I have Epilepsy that’s why I’m in the hospital and was taken advantage on where my belongings were stolen when I WAS unconscious! See the blood from MY head?!”

I got the usual, did you take your medications for it right?!
Then asked the right cop questions for a burglary!
Damn these stupid cops! Before it was “you have Epilepsy? Why don’t you go back to the hospital and take your pills!!”
Against my Human Rights!
How dare they!!

I was sexually assaulted as stated out loud because I live with Epilepsy! Police where I lived took it seriously especially when he was a “serial”!
The creature that Raped me 7 years ago yesterday and I had to start HELL from people I had no idea who they were, still don’t. Cops in this city were investigating the Everything but I have still heard nothing from them other the a select few saying “It’s really HER, let her go!”

I wish that I could turn back time to where I was in my first apartment or earlier with my feline fur baby, healthy and so much more..

LikeLiked by 1 person

Comment by Tabitha — June 21, 2022 @ 3:45 AM

Reply
I’m so sorry this happened to you Tabitha and I understand. I think this happens far too often and is the reason why several years ago I found a site called GetMyID.com. I wear this ID bracelet which happens to come in so many types and ranges of prices. It has your personal scan embedded on it so that if anything were to happen to you paramedics, the ER or a Drs office should be able to just scan the code on the bracelet and pull up your medical information instantly. It is a monitored system and the bracelets are very durable with some being quite beautiful. I recommend them highly to everyone. It’s easy to update as well. Good luck!!

LikeLiked by 1 person

Comment by Janet R. — June 23, 2022 @ 5:41 PM

Reply

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Why isn’t CENOBAMATE / aka XCOPRI listed on your list ? Years back when I was suggested BRIVIACT & read up on it, it looked to be the same then as what LAMICTAL had in it, & that caused with me INSOMNIA which I thought for the rest of my life I may have, until XCOPRI came along, & since 11-08-21 & getting up to 150MGs a day with 3 50MG tablets, NO seizures or seizure activity, PLUS I am eating some of the foods I dared not eat in the past 35 years when I learned how NITRATES & NITRITES & MSG’s triggered my seizures, which I knew 25 years before then, with the same foods causing petit mal seizures. 1 day at a time though with eating the foods I have not had for 30+ years. XCOPRI will change the GABA & GLUTAMATE balances IF your brain has that problem with GLUTAMATE & GABA, which I believe 80% of us have that problem daily in one way or another.

LikeLiked by 1 person

Comment by James D — June 19, 2022 @ 7:58 PM

Thank you James and I’m sorry.

LikeLike

Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:31 AM

- Don’t lose sleep over it. I asked my herbalist today, who I see once in a while & she had a drug book, a paper back that list every drug made except XCOPRI / CENOBAMATE, so she said it will maybe be in the 2022 book as she had a 2021 drug book. It list every side effect & every good thing each drug was made to do & it is a $40.00 book that she buys every 2 or 3 years.
  
  LikeLiked by 1 person
  
  Comment by James D — June 20, 2022 @ 9:06 PM

I’m lucky I never had any major side effects from lamotrigine that I noticed. The main problem I have which isn’t listed is that it makes me DUM DUM DUM. I can’t remember one minute to the next and my vocabulary is noticeably smaller.

Comment by Hetty Eliot — June 19, 2022 @ 8:29 PM

I’ve been on Lamotrigine for so long, I can hardly remember life without it. (No pun intended.) But like you, no side-effects.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:34 AM

I’ve had so many different drugs, and they all badly affected me, nearly went blind with Tegretol, was on sodium valproate for years, my periods stopped with no explanation, no menopause, then they found out about how it affects female hormones, the worst one for us girls is weight gain,with all of them my weight’s seesawed over the years with these drugs, I’m now in my 60s and have just given up on keeping slim, at least they’ve dropped those old ones like phnobarbitone, the chemical straightjacket

Comment by Gail Barry — June 20, 2022 @ 4:56 AM

Sounds like you’ve a had a really rough time of it, Gail.

I do remember Pheno and Dilantin were numb and dumb drugs. But there are those who still swear by them.

As always, “different strokes for different folks.”

LikeLike

Comment by Phylis Feiner Johnson — June 20, 2022 @ 9:38 AM

Thanks so much for compiling this information. Are there resources available for treating the side effects?

Comment by L J — June 20, 2022 @ 2:56 PM

LJ, I wish! 🙄

Comment by Phylis Feiner Johnson — June 20, 2022 @ 3:03 PM

I know that this is slightly different in direction and bit more like the former discussion, but it does cover both difficult subjects. I have always maintained that epilepsy is a more-than-difficult medical condition. Pile on top of that a neurologist who insists that you need another medication to control your seizures. When you go into the pharmacy and ask them how much it is going to cost, the best line that I have heard so far is this – “that will be a total of $1,038.00; will that be a problem for you?” That drug, or lack of it, right there on that spot began to make me nauseas. I’m not kidding. And then I almost fell to the ground. Our epilepsy is already difficult enough, and then we are prescribed a medication that there is no way of affording. It really did make me pretty sick on that spot. I have now been prescribed a necessary emergency rescue inhaler for my intractable nocturnal seizures. Here we go again. And I am not kidding, even with insurance that Valtoco inhaler is going to cost over $220.00 for a dose. I do hope that when I find a way to afford these out-of-reach medications, they will bring about the relief I long for. These necessary medications might even give me a lower or nonexistent number of side effects from other antiseizure medication; my lamotrigine gives me none.

Comment by George — June 20, 2022 @ 3:05 PM

He who has the most money “wins”. (Present company excluded.)

Have you tried any of these systems?

Epilepsy — Top Financial and Medical Assistance Programs https://epilepsytalk.com/2019/03/19/epilepsy-top-financial-and-medical-assistance-programs/

When Your Meds Cost More Than You Can Afford — AED Drug Assistance Programs https://epilepsytalk.com/2021/04/27/when-your-meds-cost-more-than-you-can-afford-aed-drug-assistance-programs/

Health Insurance — No-Cost & Low-Cost https://epilepsytalk.com/2017/08/17/health-insurance-no-cost-low-cost/

LikeLike

Comment by Phylis Feiner Johnson — June 20, 2022 @ 3:34 PM

- I completely agree with you George! I have recently told ALL of my Drs that it will literally take an act of Congress to change the way Health Insurance companies view our health issues and the types of drugs we need to control our specific needs. It’s not an easily understood problem and we all know that Congress moves at the pace of a Sloth. There seems to be an on again/off again allowance for certain meds that insurance companies will cover and at any time they will then decide to stop covering them leaving us stuck and that is so not a good thing because our bodies can’t just stop taking a drug we have to maintain a therapeutic level of for chemical equilibrium. Why is this such a hard concept for most people to understand?? It isn’t just AED’s that can cause a reaction for us, it is also other meds we take that we can react to. For instance, I suffer from severe migraines as well as having epilepsy. My epilepsy is under control as long as I keep taking my meds but let’s face it those AEDs are very powerful drugs. I was recently given a new triptan med, the smallest dose, to take at the onset of a bad headache and had a very bad drug interaction from it in combination with my other meds. Is this kind of thing easily understood? No, it is not. It is a whole different can of worms and I am bullied about this by an insensitive boss and I am too much of a lady to tell him what I really think of him but one day I know I will because he laughs at me and threatens to fire me all the time. So far, I just walk away from him. He knows I know more than he does about disability laws and he wants to avoid a lawsuit…lol. He is an idiot! He also has little cause to fire me, I do my job well. What it has amounted to has been searching out the most effective meds that my insurance company will cover and sticking with what works. I have needed my Dr. to provide the prior authorization letters so they cover the cost and those letters usually last a year. I’ll be honest, it is a pain in the butt! The other problem is that health insurance companies rule the Drs and not the other way around. Each state also has their own rules which I found out the hard way when I moved from NY to CO. This is a very messed up system we have in the US and healthcare has NOT been a priority for a very long time. We have said it before and it needs to be screamed very loud!! It is the cause that yells the loudest that gets the most funding and epilepsy isn’t it. I recently told someone some of the triggers including the changing temperatures in a shower or a bathtub and they didn’t believe me. One of my neurologists explained to me as a child that seizures can be compared to spark plugs in a car. When you try to start a car and something happens that the car won’t start, very often, it is because one of the spark plugs misfires and doesn’t send the signal to the part of the car that needs to help that part of the car get going and the engine seizes. That is what happens in the brain he told me except now I understand the brain a little better! LOL… Sometimes, I become angry when I have to explain why I wake up with a migraine most of the time. Our body is a chemically charged instrument, that’s how it works. When we go to sleep most of our body chemistry slows down and goes to sleep too.When we begin to wake up so does our body chemistry. For some of us tho’ it’s too much of a chemical charge, like me and I will have a headache or a migraine. Some of us may have seizures. That is the way we are wired unfortunately, so we need different meds that work with our body to help it work better.
  Wouldn’t it be nice if insurance companies could just understand these simple concepts and tell the drug companies to quit messing around with greed and politics and help us help each other?? I always thought as human beings that is what we were supposed to do….help each other. I keep hoping and praying that happens for all of our sakes.
  
  LikeLiked by 1 person
  
  Comment by Janet R. — June 23, 2022 @ 5:27 PM

I was yanked off of Sabril first week that I started it. My Neurologist had a flashing red computer screen that he showed me when called to get to his office asap!
In the 1990’s the FDA stated that the prolonged usage of Sabril would cause the person taking the medication permenant blindness!
Luminal, another medication I was taken off of that because of allergic reactions as with too many AEDs that out there.
You named the only 2 medications that I’m taking and I have no adverse or allergic reactions to. I was taking the brand name that you wrote now here where I am has only had the generic version for over 25+ years.

My only adverse affects is faulty wiring, illicit drugs(street drugs) and the stress of people stealing from me and the police not doing a damned thing..
This is already a hard month as I had my last severe Atonic seizure on the 18 and when I woke my wallet was stolen from my pouch as was my medication!
Strangely and thankfully enough Nothing else!
Paramedics got police to come… Police did a half ass report with me barely conscious and getting brow Beaton “are you going to going to stay awake to give a report or do you want me to leave!”
Another cop that doesn’t know about Epilepsy!!
I yelled, halfheartly and said “I have Epilepsy that’s why I’m in the hospital and was taken advantage on where my belongings were stolen when I WAS unconscious! See the blood from MY head?!”

I got the usual, did you take your medications for it right?!
Then asked the right cop questions for a burglary!
Damn these stupid cops! Before it was “you have Epilepsy? Why don’t you go back to the hospital and take your pills!!”
Against my Human Rights!
How dare they!!

I was sexually assaulted as stated out loud because I live with Epilepsy! Police where I lived took it seriously especially when he was a “serial”!
The creature that Raped me 7 years ago yesterday and I had to start HELL from people I had no idea who they were, still don’t. Cops in this city were investigating the Everything but I have still heard nothing from them other the a select few saying “It’s really HER, let her go!”

I wish that I could turn back time to where I was in my first apartment or earlier with my feline fur baby, healthy and so much more..

Comment by Tabitha — June 21, 2022 @ 3:45 AM

I’m so sorry this happened to you Tabitha and I understand. I think this happens far too often and is the reason why several years ago I found a site called GetMyID.com. I wear this ID bracelet which happens to come in so many types and ranges of prices. It has your personal scan embedded on it so that if anything were to happen to you paramedics, the ER or a Drs office should be able to just scan the code on the bracelet and pull up your medical information instantly. It is a monitored system and the bracelets are very durable with some being quite beautiful. I recommend them highly to everyone. It’s easy to update as well. Good luck!!

Comment by Janet R. — June 23, 2022 @ 5:41 PM

Epilepsy Talk